Michael's Care Page

Michael's doing well...

2010-01-18T21:05:00.002-05:00

Michael's surgery went okay on Friday. It was supposed to take an hour from start to finish but it was well over 2 hours later when the surgeon came out to tell us Michael was fine and on his way to recovery.

We had a little disagreement with the anesthesiologist right before the surgery. She insisted on using the anesthesia drug that Michael previously had a reaction to. She claimed she had "no other choices", which we know is not true since they give him a different kind in Rochester. In the end, she promised that she had another drug that she would give Michael that would counteract the anesthesia and he would have no reaction. So, we put our trust in her and reluctantly agreed.

When it took so long in the operating room, my mind was running wild with things that had gone wrong with the anesthesia and envisioned them afraid to let us see him. But that wasn't it. Apparently his port was stuck and they had to "bring up a special machine" to help them get it out. But they did remove it and Michael was finally resting comfortably in recovery. The nurses had told us we absolutely couldn't keep the port but the surgeon said we could and in the end, he brought it out to us. It is now on a shelf in Michael's room.

Michael was starving when he finally woke up from surgery and ate like a crazy man over the next couple of hours. Unfortunately, he didn't keep any of it down. The good news is that we still carry all of our nausea paraphernalia from chemo in the car so it wasn't a big problem. We stopped on the side of the road and cleaned things up with some snow and then Michael slept the rest of the way home. He felt much better by the time we got home.

Michael had quite a bit of discoloration from the blood pooling under his skin but that is pretty much all gone now. He had some pain Saturday and Sunday but hates taking medicine so he just tolerated it and he's now pretty much pain free. He was pretty quiet and favored his right arm over the weekend but isn't doing that so much anymore. The only left to do is wait for the stitches to dissolve (which should take up to 2 weeks).

I am glad this is all behind us because Michael had a VERY rough couple of weeks. He was difficult, overly emotional and - well - totally obnoxious. It was so out of character for him and I was hoping it was anxiety over the upcoming surgery. When I would ask him what was wrong, he would tell me he just couldn't explain what he was feeling. Since he woke up in the recovery room with a smile on his face, he is back to being my sweet, adorable little boy and I am immensely relieved.

The next stop in our journey is an MRI next month in Syracuse. I will try to post some pictures I would like to share in the next couple of days. But as I said last time, I am working on a different computer so I have to transfer the pictures onto this one (which involves a learning curve since it is different software). In the meantime, please keep Michael in your thoughts and prayers, JoAnne.

It's been a while ...

2010-01-14T21:34:00.002-05:00

It's been a while since I posted. My laptop has been very ill with a nasty virus and we are redecorating our den so my desktop is not very comfortable to work on right now.

When I posted last, we were getting ready for Michael's latest MRI. I am thrilled to say that it was spectacular. To Dr. Korones's amazement, it looked like the tumor shrunk a little more. At the very least, there was still no active growth. Jeff made a comment that we were really nervous before the MRI and Dr. Korones was honestly puzzled as to why. We told him that we figured that the farther away we get from chemo, the more likely it was that there would be some growth. He said actually the opposite was true. The farther out we go, the less likely that the tumor would to start growing again. That was wonderful to hear. We also talked to him and he supported our decision to start having Michael's MRI's done in Syracuse. I took some comfort in that because I feel if he thought Michael was in any danger, he would want us to continue going to Rochester.

We are heading to Syracuse tomorrow for our first appointment there since switching away from Rochester. Michael is scheduled to have his port-a-cath removed at 11 am. If there are no problems with the anesthesia, it should be a simple procedure and we should be out of there early. We told Michael if he feels well enough, we will stop at Toys-R-Us on the way home so he can use a gift card he received for Christmas. Keep your fingers crossed that everything goes smoothly.

I will post again tomorrow night to let everyone know how he made out. Please keep Michael in your thoughts and prayers, JoAnne.

A change in plans ...

2009-11-03T20:19:00.011-05:00

We were supposed to be heading to Rochester for Michael's MRI tomorrow but we had to reschedule. Michael has been fighting a high fever and a cough for the last 2 days so he can't have anesthesia. We have rescheduled for 2 weeks from now. But, the good news is Michael seems to be on the mend.

Michael had a great time playing soccer this fall.

His favorite position was definitely goalie.

Now it is on to basketball.

Michael had a great Halloween. He dressed up as Bumblebee (a Transformer - go figure) and actually got a lot of use out of his costume. First there was a church school party, then a Boy Scout party to which we took ...

... Monster Mouths (apples, peanut butter and candy corn) and ...

... and Freaky Fingers (cheese sticks and almond slices) to share.

And to wrap up the holiday ...

... a parade and party at school.

Then on Saturday, Jenny and Ralph made it home. Before heading out to Trick or Treat, Michael and his big sister crafted this masterpiece ...

On a side note - Michael received his beads from Beads of Courage today. If you haven't checked out their website, click on the link in my sidebar and check them out - it is an incredible program. Michael and I will be stringing his beads to represent the time line of events he has gone through for the last 2 years. I will post a picture when we are done.

We have our appointment with Michael's neurologist next week, I will let you know how we make out. Please keep Michael in your thoughts and prayers, JoAnne.

I have been remiss in posting medical updates ...

2009-10-16T07:00:00.000-04:00

I noticed I haven't posted any medical "news" in awhile and thought I should catch up.

A couple of weeks ago, Michael went to see his pediatrician, Dr. Swan, for his annual checkup. She thinks he is doing great and it was great to see her (she is still my hero). It was also time for Michael to get a couple of vaccinations.

Unfortunately, when the nurse came into the room with the needles, Michael had a complete panic attack! For a little boy who has had in the neighborhood of 75 needle "pokes" over the last 2 years with nary a complaint, his response was very unexpected and totally heartbreaking. Once they were done though, Michael calmed right down and admitted that it wasn't as bad as he thought it was going to be.

Then, last Thursday, the 8th, Jeff and Michael made the trip to Syracuse for Michael's last antibiotic infusion. That means Michael has been off chemo for 6 months and all of the chemo drugs should be out of his system. We are going to Rochester the first week in November for Michael's next MRI and if everything is stable, his port can come out anytime after that. And since I am in a constant state of worry about his port, I will be thrilled.

For instance, Michael loves playing soccer and his favorite position to play is goalie. Two Saturday's ago, Michael stopped the other team from scoring by taking a soccer ball to the face. The poor thing dropped like a stone and the coach thought he was out cold. But, he got right up and finished playing the game. Of course like all parents, my heart stopped and I was holding my breath until I was sure he was okay. Unlike most parents (who would have been upset that their child took such a hit to the face), all I could think was "Thank God it didn't hit his port."

Shortly after school started, we received a letter from the school's occupational therapist. She said she noticed some deficits in Michael's fine motor skills and recommended she work with him to see if we could refine those skills. She doesn't think it is serious and isn't even recommending we do any special testing at this point. But she is aware of Michael's medical history and thinks we should be proactive as opposed to reactive.

After I calmed down and started breathing normally again (okay - I admit I overreacted but after all this is something neurological we are talking about), we agreed to let him go to the special classes. He actually loves it! They do crafts and play games and after each class he looks forward to the next time.

But in light of this development, I have made an appointment to see his neurologist when we head to Rochester next month. And while we are there, I intend to restate my arguments on why we should try taking Michael off Tegretol.

I talked to Dr. Swan about it, and she agrees with me that trying to wean him from the medicine with the understanding that we would put him back on it at the first signs of seizures is a good idea. She also pointed out that Jeff and I are the parents and the decision is ultimately ours and not the doctor's. "Yes" I told her but doctors have a way (intentional or not) of making you feel like a rotten parent if you go against their advice. (Remember the surgeon that implanted Michael's port?) Keep your fingers crossed that I can be persuasive this time.

I guess that is all the news for now. Until next time, please keep Michael in your thoughts and prayers, JoAnne.

Did you hear ...

2009-10-14T14:49:00.004-04:00

... about the six year old boy that was suspended for taking a knife-fork-spoon utensil to school? Well, last weekend Michael found a swiss army knife that belongs to Jeff and was fascinated with it. So, I thought it would be a good idea if we have a discussion on how taking something like that to school would be a big no-no. It went something like this:

Me: "Hey Buddy, you know that knife of Daddy's you were carrying around last weekend?"

Michael: "Yes."

Me: "You know not to take anything like that to school, right?"

Michael: "Yes Mama. Why?"

Me: "Well there is a little boy the same age as you who took a camping utensil to school and he got in big trouble because it was against the rules. And now he can't go to school for a while"

Michael: "Oh." (He thinks for a minute.) "Why can't he go to school?"

Me: "Because the rule says that if you bring something to school that could be considered a weapon, you get suspended. Do you know what suspended means?"

Michael: "Yes. Dad told me."

Me: "Good. We don't want that to happen to you."

Michael: "Don't worry, Mama. I got in trouble in Kindergarten for taking a screwdriver to school and I won't do that again."

Me: "Ouch." (That is from the pain in my neck from whipping my head around so fast to look at Michael.) "You took a real screwdriver to school? When?"

Michael: "Last year and the teacher told me not to do it again, so I won't."

Me: "Well, good. I am glad we had this talk."

And, since Michael has carried tools around since he first learned how to walk (although they are usually toy ones), I am extremely grateful that Michael's school apparently has a lot more common sense than that of the little boy in the news.

Please keep Michael in your thoughts and prayers, JoAnne.

Conversations with Michael...

2009-09-25T22:05:00.002-04:00

This week Michael and I had some pretty interesting conversations that I would like to share with you.

The first was Wednesday night on the way to Open House at school (which went well). We were talking about his new friends that I might get to meet and he said "By the way, I have a new girlfriend."

"Oh really" I responded.

"Yes" he said "and you're not going to like this."

"What is that?"

"She hugged me."

I hid my smile and asked, "Does that mean she thinks you're her boyfriend?"

And his reply was - "No but I told her, 'you don't know it yet but you love me'." No self esteem problems in this kid!

The second conversation was after I picked him up from his first week of church school yesterday. He asked "Mom did God make Transformers?"

I said, "I guess indirectly since he made the people that invented Transformers and all of the materials that go into them. Why?"

He said, "Well, my teacher wanted us to write down our favorite thing that God has made and I wrote 'Transformers'. Is that okay?"

"I am sure it is just fine."

The third conversation was on the way home from the store last night. He asked "Where do puppies come from?"

"From the Mommy dog's belly" I answered nervously.

"I know that," he said. "How do they get out of her belly?"

My mind worked frantically and I came up with "well, when the puppies are ready to be born, the muscles in the Mommy's belly pushes them out into the world." And then I held my breath, waiting for the next question from that subject that every parent dreads.

But, "Oh" was all he said. I think I bought myself some time but I better get my story straight for next time.

And the last conversation was tonight while we were waiting for a movie to start. He said "My church school teacher asked us all to say what is special about us. And, I said "I have a port in my chest'."

According to Michael she said that he was very special because of that and that she knows this because her daughter used to have a port just like Michael's. And, if you could have seen the look in Michael's eyes, you would know how much that meant to him.

Until next time, please keep Michael in your thoughts and prayers, JoAnne.

In case you were wondering ...

2009-09-17T20:12:00.000-04:00

... why we signed Buster up for dog training classes, it's because of incidents like this -

Yesterday, he ripped thecushion on the loveseat on the deck and hid his bone in the stuffing. I sure am glad I didn't get around to sewing those new cushions I was planning this summer.

I also forgot to tell you about the week that Michael received his first allowance - Jeff put $2 on the kitchen counter for Michael and Buster thought it would make a tasty snack. And, there isn't a pillow in our home that is safe and the casualties from our shoe closet are too upsetting to speak about. He's just lucky that we love him so much.

Anyway, our first class went well. Our instructor showed us some indestructible toys which we bought that seem to be satisfying Buster's need to chew. She also told us we should take Buster on a long walk each evening to use up some of his puppy energy. Apparently Buster wasn't listening to the instructor very closely because he missed the part where walking was supposed to tire him out! It actually seems to give him a burst of energy and when we get home he bounces off the walls for the next hour.

Tuesday night was Michael's first soccer practice and his first game is this Saturday morning. I was quite impressed with Michael's effort at practice. He listened attentively to his coach and was quite aggressive in going after the ball. I'm anxious to see how he does at his first game (I promise to share pictures).

School is going well. Michael brought home some work that actually made me cry -

(I know it is hard to read.) They were practicing writing their vocabulary words and at the bottom he was to write a complete sentence using at least one of the words. And, Michael wrote "I like my Mom". As a parent, it doesn't get any better than this. Please keep Michael in your thoughts and prayers, JoAnne.

A picture's worth a thousand words ...

2009-09-10T19:59:00.003-04:00

This is what Michael's face looks like these days. The bruise and little cut just in front of his right ear are where he walked into the corner of the counter last weekend. The scrapes on his forehead, left side of his nose, right nostril and tip of his nose are where he took a header down the front steps the other night. And, the long scratch that starts just below his right eye is from you know who (Buster). And to be honest, it looks a LOT worse in person than it does in the picture above. We're keeping Neosporin on them in hopes that they will all be healed before school pictures next Tuesday.

We went tonight to sign Michael up for soccer and to sign Buster up for obedience classes. I will let you know how both go. Until then, please keep Michael in your thoughts and prayers, JoAnne.

It's back to school ...

2009-09-08T20:58:00.006-04:00

Today was the first day of First Grade for Michael and ...

... Buster gave Michael kisses ...

... to let him know he was going to miss him.

Michael was excited to go to school today and when he got home, he said his favorite part of the day was recess. Only one of his friends from last year is in his class but he said that was okay because he already made a new friend today.

His teacher had sent a paper in the mail last week on which she wanted all her students to write their goal for the year. Michael wrote that his goal is "to learn to shoot baskets better". I was kind of hoping for wanting to learn to read by himself or do addition or something else academic but I guess not. But, I know that he really does want to learn to read and do math so I am not too worried.

This afternoon when Michael got off the bus, we went to the eyeglass store to pick up Michael's new glasses we had ordered last week (since Buster ate the last pair) but they weren't ready yet. I let Buster have the run of the house since we would only be gone a few minutes - BIG mistake! He decided to eat the folder with Michael's papers from school, today's mail and a pillow. (Do you notice a theme here?) So, I have to write a note to Michael's teacher on the first day of school and tell her that the dog ate Michael's homework. Not a great start to the year.

He looks so sweet and innocent, doesn't he? Don't let him fool you. As my Dad says "he sure is a handful". Life certainly isn't as quiet as it was before we got him but it's also a lot more enjoyable. Michael has a lot of bruises all over his body but his blood counts have recovered from chemo so we've ruled that out as a problem. After talking to Michael last week, Dr. Kennedy decided to call them "Buster Bruises". And as if to prove the point, Michael and Buster were outside playing tonight and Michael took a nosedive down the front steps. So, now Michael has a few more "Buster Bruises" on his face. At least he didn't break any bones!

Michael has informed me (a couple of times) that he has always wanted to learn how to play the piano, so I am going to look into that. I think that is a great idea since Michael has loved music since he was a baby and the discipline of learning to play an instrument would be good for him. My nephew, John, and his wife lost their home and all of their belongings to fire on Sunday and yesterday Michael was helping me gather things to give to them. He found a radio and added it to the box saying we have to give them a radio because everyone likes to listen to music. I was just touched that he wanted to make sure someone else could enjoy something that means so much to him.

Until next time, please keep Michael in your thoughts and prayers.

A Belated Report and More Summer Fun ...

2009-09-02T20:45:00.000-04:00

Earlier this summer, we spent a weekend catching up with family. We headed to New Jersey and our first stop was to see Jenny and Ralph. We hung out for the afternoon at their apartment complex ...

... before checking out the sites and sounds (and a few shops) of Princeton.

Then the next day we headed to a reunion of my Dad's side of the family to celebrate my cousin Pat's 50th birthday.

Michael had the privilege of being asked to help the honored guest blow out his candles.

Then on the way home, we stopped to visit with a gathering of family on my Mom's side of the family. My cousin, Tommy, is Highway Superintendint for the town and took our little buddy to ...

... check out the heavy equipment!

I had to laugh, my Dad's side of the family is typical, full-blooded Irish and my Mom's family is typical, full-blooded Italian so I could tell my poor Polish husband was a little shell shocked by the end of the weekend. But it was a great weekend and I wish we had had more time to spend at each place.

I was also looking back through my last posts and realized I never shared the results of our meeting with the neurologist in June. It was actually very disappointing. Dr. Wang wasn't available to see us so we saw one of his assistants. And, no matter how I argued - she wouldn't agree to take Michael off of the Tegretol. She didn't agree with my argument that Michael has been seizure free for 2 years and even then he was having "partial" seizures. I thought we could try taking him off the medicine and at the first sign of his old symptoms, we could put him back on. But, she said protocol says he needs to stay on it for at least 3 years after his surgery and that we would discuss it next year (but even then she sounded resistant).

I am just concerned that the side effects of the Tegretol will cause damage in other parts of Michael's body that could bring on a whole new set of problems. For instance, Tegretol can damage the liver and there is a genetic liver disease, Hemachromatosis, that runs in my family. In fact, the effects of this disease are what killed my mother. And at this point, Michael is too young to be tested for it. So for now, we are respecting the doctor's orders but if they still resist next year, it may be a different story. I understand that they are looking at it from a neurological standpoint but I am looking at it from the big picture.

Next time, I will share with you our summer vacation in Cape Cod. Until then, please keep Michael in your thoughts and prayers, JoAnne.

Our latest adventure ...

2009-08-29T22:27:00.008-04:00

This past Wednesday, we headed north of the border to Canada.

We took the ferry from Cape Vincent to Wolfe Island where we caught a second ferry that took us over to Kingston, Ontario and our destination - Fort Henry.

Fort Henry is a fortress built on the shores of Lake Ontario during the War of 1812. That part of Canada was a British colony and there was some fear that the Americans would try to attack.

The fort actually fell into serious disrepair until the 1930's when a major restoration project began and turned it into a premier historical site in our area. We thought Michael is at a great age to understand and enjoy the sights and sounds of the fort - and we were right.

During the afternoon, we toured the fort and watched several presentations.

Michael thought the funniest part of the tour was ...

... the toilets. Yes- that is one in the picture above. There were five in a row and I can tell this was the women and children's privy because there are actually seats over the boxes. The contents of these boxes flowed into a ditch underneath that was "flushed" with collected rain water once a week. We were really glad they haven't been used in many years.

There were lots of guns and canons being used by the Fort Henry Guard - which is composed mostly of college students. And since it is time to head back to college, this week was actually the last Sunset Ceremony of the year and I'm glad we didn't miss it.

After demonstrating their military precision on the parade grounds ...

... it was time to defend Old Fort Henry in a mock battle. Michael was mesmerized during the whole spectacle. And afterwards, there was a pretty awesome fireworks show. It was a great afternoon and Michael was asleep before we made it out of the parking lot. I'm glad you came along on our little adventure and until next time - please keep Michael in your thoughts and prayers.

It's that time again ...

2009-08-20T20:42:00.004-04:00

It's hard to believe that the summer is almost over. I guess that is a sign of how much we have enjoyed it. It also means that it is time for Michael's quarterly MRI.

Jeff & Michael made the trip to Rochester yesterday for the actual test. It didn't go as smooth as it usually does. There was a different anesthesiologist and he chose to use a different anesthesia which can have a nasty side effect. And, as luck would have it, Michael experienced it. It is called Delusional Emergence and according to Jeff it is terrible to see. As Michael was coming out of the anesthesia, he starting suffering severe terror and paranoia. I also found during my research of this drug that many sufferers claim that at the time of the delusions they think they are in extreme pain and don't realize until afterwards that the pain was not real.

Jeff said one of the recovery room nurses came out to the waiting room to get him saying they needed someone strong to hold Michael down - he thought she was kidding. When he got to the recovery room, Michael was screaming at the top of his lungs and fighting the nurses. Apparently this went on for a while until Michael fell back asleep for a short time. He remembers the incident but doesn't seem traumatized by it. He told me that he was screaming really loud and that he hurt. When I asked him where he hurt, he said he didn't know. Trust me - Jeff and I will make sure they don't give our little buddy that drug again.

Today was a much better day. The three of us made the trip back to Rochester to see Dr. Korones and received very good news. It appears the tumor may have shrunk a little more. At the very least, it certainly didn't grow. Now we wait another 3 months until the next MRI. In the meantime, we are enjoying life to the fullest.

I didn't notice until tonight how long it had been since I posted. A lot has happened...

... there was Kindergarten graduation ...

... six weeks of playing t-ball ...

... and Buster has definitely kept us busy.

We've done lots of fun things like spending the day at a local water park ...

... and a week in Cape Cod.

That was the best! I promise I won't wait so long to post again and I will share some more of our summer with you in the near future. Until then - please keep Michael in your thoughts and prayers, JoAnne.

Meet Buster...

2009-05-27T20:39:00.005-04:00

No.. not this Buster...

...this one!

I would like to introduce the newest member of our family - a 3 month old goldendoodle puppy we brought home last Thursday evening and named Buster. If you've never heard of a goldendoodle, they are half golden retriever and half poodle. They can have either curly hair like a poodle or straight hair like a retriever. Either way, the best part of a goldendoodle is that they don't shed. Buster has straight hair and he is absolutely beautiful. He is also very smart and affectionate. And, he is well on his way to being spoiled rotten...

... by all members of our family. (Here is Michael sharing his ice cream cone with his new best buddy.) Buster has all of the energy you would expect from a puppy and Michael is having a ball keeping up with him. And the farther away from chemo we get, the more energy Michael seems to have. I never thought he was really "down" from chemo but now I know I was mistaken. It is so comforting to see Michael acting like any other 6 year old boy - that's right, SIX years old.

Since I last posted, a lot has been happening but the most exciting thing (besides Buster) was Michael's sixth birthday on May 7th. We celebrated on the Sunday before his birthday with a party at the YMCA to which Michael had invited his entire Kindergarten class and a couple of friends from our neighborhood. Jenny and Ralph were also able to join us. The kids had fun playing on the indoor soccer field for an hour and then we had the use of a "party room" for the next hour. Michael really enjoyed his party and I think it was everything he had hoped for.

Then on the night of Michael's birthday, we had a quiet dinner and cake at home. Brian, Janain and Jeff's Mom joined us for this little get together. I have always let my kids pick their favorite meal to have on their birthday and Michael picked spaghetti and meatballs with ice cream cake for dessert.

In other news, we participated in the Make-A-Wish Walk for Wishes on May 2nd. We had set a fundraising goal of $1,000 for our team and we were actually able to raise over $1,300. Thanks to everyone who helped us reach our goal!

Michael starts t-ball next week and he is so excited. He has Daddy in the backyard practising every chance that he gets. He has quite a little throwing arm on him and he can hit the ball quite a distance! And before we know it, the end of school will be here and we will be attending Kindergarten graduation. I will be sure to share pictures with you all. Then after t-ball, soccer starts in July.

Michael and I are also going to take Buster to puppy training classes so that Michael learns how to handle him correctly. I have to say that I am amazed at how quickly we all got back into the swing of life. Jeff and I have been very busy working on some projects around the house that got forgotten for the last 2 years.

Next Tuesday, we have to travel to Rochester to meet with Michael's neurologist. Keep your fingers crossed that they agree to let us try weaning Michael off of the anti-seizure medicine. I will keep everyone posted. Actually, I've had numerous requests to keep sharing Michael's life with all of you so I will do my best to post more frequently. In the meantime, please keep Michael in your thoughts and prayers, JoAnne.

Walk for Wishes

2009-04-27T11:23:00.002-04:00

This weekend, our family will again be participating in the 2009 Walk for Wishes to raise money for the Make-A-Wish Foundation of Central New York. The CNY Chapter had granted over a thousand wishes to children who are living with life-threatening medical conditions. As some of you may know, the Make-A-Wish Foundation granted Michael's wish this past summer. You can read about Micheal's wish here.

In honor of Michael, we is walking with the goal of raising $1000 for Make-A-Wish. If you would be willing to help us reach our goal, you can click here to go to our team page and help us in our efforts to support the Make-A-Wish Foundation of Central New York. If you would prefer to make a donation to your local Make-A-Wish chapter, you can locate it here.

Thank you!
Jenny

The best news...

2009-04-23T19:16:00.002-04:00

We are home from Rochester and have wonderful news to share. We saw Dr. Korones today and we were told that although the "bulk" or "mass" of the tumor is still in Michael's head and will always be there, it is dead. When there are tumor cells that are "alive" (actively growing and dividing) they show up white in the MRI because they absorb the contrast dye the radiologists use during testing. When the cells are "dead" they don't absorb the dye so they don't "light up". Michael had NO white in his MRI!!

Dr. Korones said that there will always be a chance that the tumor could come back but that based on the history of how Michael's tumor reacted to chemo, he thinks that it is less likely to come back. The game plan now is Micheal's antibiotic once a month for six months in Syracuse, back to Rochester for an MRI on August 13th and then every three months after that for a year. If everything goes well during that time, we then go to MRI's every six months for a while and then eventually every year.

It feels like we have come to the end of this leg of our journey and hopefully it was the most difficult part. This seems like a good point to convert this blog to a book for Michael to have and keep when he gets older. I will continue to post on here to keep everyone updated but it may not be as regularly. We are still on the hunt for a puppy and we also have the Make-A-Wish Walk for Wishes in a couple of weeks. Michael's birthday is around the same time, then t-ball is in June and soccer is in July. And let's not forget Kindergarten graduation! We have also rented a house on the beach in Cape Cod and will be spending a week there doing nothing (and loving every minute of it). I will make sure to share all of those things with all of you.

In the meantime, I want to thank everyone for their positive thoughts and prayers. Jeff and I believe that you all helped us achieve our positive outcome and without all of the support we have received, this may have all turned out differently. And we would like to ask that you continue to keep Michael in your thoughts and prayers. Take care, JoAnne.

Life's a beach...

2009-04-21T22:12:00.004-04:00

This past Sunday, Michael and I took advantage of the nice weather and headed to the beach ...

... not to swim of course but to explore ...

... and play in the sand.

And before we left the park we were at ....

... we checked out the awesome playground.

It was a very relaxing way to spend a couple of hours.

I have a secret to share though - I got sort of sad watching Michael play thinking that the number of summers that Michael will enjoy this sort of adventure with innocent abandon are finite and I better savor them while I can.

Michael has been doing well since the end of chemo. He wasn't sick after that last treatment until Easter Sunday and then it was a long car ride and lots of excitement that did him in. We started our day checking out some goodies from the Easter bunny and Mom and Dad.

The Easter bunny always leaves the Easter baskets on the fireplace hearth. He must come down the chimney like Santa Claus. He also hid some eggs in the house for Michael to find. I think he realized it was just too cold to hide them outside this year.

After the Easter egg hunt, Jeff's Mom came by and the four of us headed to Albany for an Easter feast at Jeff's Aunt Barbara's home. Much of Jeff's extended family was there and Michael had fun getting to know some cousins he hadn't seen since he was a baby. The trip to Aunt Barbara's is three hours long and we haven't been able to make it the last couple of years with all that has been going on with Michael.

Michael did well until the last leg of the trip to Albany when he got car sick. After that his stomach was upset and although he tried, he couldn't eat or drink anything. After we got back home, Michael started throwing up in the middle of the night and by morning was pretty dehydrated. He started having severe pains in his stomach (like he had last month when we wound up in the Emergency Room).

So, I gave Michael a choice of drinking lots of fluids or going to the ER to get an IV and he chose the fluids. By mid-afternoon on Monday, he was feeling like his old self - the pains were gone and he was eating with no problems.

At least Michael was able to join in the Easter festivities before becoming too sick. The Easter bunny was found wandering in Aunt Barbara's back yard - I am not sure where he came from (or is it "she"?).

She had a basket full of surprises for Michael and all of his young cousins.

Including their own little filled Easter basket and balloons.

And then after dinner ...

... there was a magic show (with a professional magician). Michael even got a turn as the magician's assistance and helped pull an egg out of an empty bag.

The last few days have been remarkable. Michael's appetite and energy level are higher than I have ever seen. I would say he is over the "effects" of chemo. Well, except for his blood counts. Judging by the number of bruises on Michael's legs, I think his counts are probably low.

Jeff took Michael to Syracuse last Friday to receive his monthly antibiotic infusion so now he is set with that for another month. Tomorrow is his 3 month MRI. So tonight, we are settled into our hotel in Rochester and have to be at the hospital at 11 am. Then on Thursday, we will get the results when we meet with Dr. Korones. I will let everyone know how we make out. Keep your fingers crossed. And, please keep Michael in your thoughts and prayers, JoAnne.

And with that...

2009-04-10T18:44:00.006-04:00

...chemo is over! It went VERY well today. And Michael is feeling fine tonight. He and Daddy have been playing games, doing puzzles and we just had a picnic dinner in the living room.

We took a cake as a small Thank You to the staff of 5C including (but certainly not limited to)....

...Dr. Kennedy....

...nurse Sharyle...

...and of course, nurse Jen.

Michael received an Easter basket from Britney and he got to meet the Easter Bunny. The Easter Bunny was accompanied by the county Sheriff and one of his deputies and they gave each child in the clinic a book and a stuffed bunny.

And although chemo is over, we will be seeing everyone (except the Sheriff and the Easter Bunny) next week. Starting next Friday, Michael will be going to the clinic once a month for 6 months to receive his IV antibiotic. And of course he will still be having his MRI's every 3 months for a while.

Dr. Kennedy wants to leave Michael's port in for 6 to 12 months to be sure that he doesn't need chemo again. She said 30% of the children that go through the chemo regimen Michael just finished, don't ever have to have chemo again. The other 70% - well, you know. Let's hope that Michael is in the 30% pool. Please keep Michael in your thoughts and prayers, JoAnne.

P.S. I almost forgot to share our GREAT news - I spoke to Dr. Wang's office today and there was no seizure activity during Michael's EEG. Yeah!!! Let's hope that I can convince Dr. Wang to let us try taking Michael off of the Tegretol when we see him next month.

No news yet...

2009-04-09T20:10:00.003-04:00

I called the neurologist's office today to get the results of Michael's EEG and the receptionist said she would have one of the nurses call with the results but no one did. I will call again tomorrow and then let everyone know what I find out. Please keep Michael in your thoughts and prayers, JoAnne.

All went well...

2009-04-08T20:45:00.003-04:00

We are home from our latest trip to Rochester. Michael's EEG went well today. He did everything he was supposed to do and laying still was definitely the hardest part for him. It also took a while for Michael to fall asleep but he finally did. When we got home, we had to soak his head in the bathtub for a while but were finally able to get all of the glue out of his hair. I am supposed to call tomorrow to get the results. I will post again tomorrow night and let everyone know what Dr. Wang says. Please keep Michael in your thoughts and prayers, JoAnne.

I'd like to tell you about some of Michael's oldest friends...

2009-04-07T17:00:00.000-04:00

Michael has a group of friends that are there for him whenever he needs them - through thick and thin. They came into his life when he first started showing the symptoms from the brain tumor and he didn't understand what was happening to him. They are "The Invisible Animals That Live in His Pocket". They are a great bunch - all 19 of them. There is one crazy bird named CooCoo, and the other 18 are all named Rocky and they are Wolves, Giraffes, Dogs, Snakes, Iguanas (a few of each). Whenever Michael finds himself in a situation that makes him nervous or scared (and there have been too many to count over the last year and a half), his animals are right by his side to help him through whatever the situation is.

And they aren't just there for Michael. A couple of weeks ago, Michael and Daddy pitched a tent and had a sleepover in the living room so I had the whole bed to myself. When I commented on that the next morning, Michael piped up and told me that I wasn't alone - that he had sent his animals in to keep me company so I wouldn't be afraid. I was happy to hear that. Especially considering they took up much less room in the bed than one full-grown husband and one restless little boy.

I don't know how long this menagerie will continue to live in Michael's pocket as he mentions them less and less. But, for now I am glad they bring my little boy some comfort during moments of stress. And they also act as a signal to me to know when Michael is feeling a little worried.

Please keep Michael in your thoughts and prayers, JoAnne.

Another award...

2009-04-06T20:16:00.003-04:00

Michael's teacher handed out an award today for "Never Giving Up" and guess who she gave it to? Yep - our little buddy. He was soooo excited when he got home from school! I called him after school to see how his day went and he was chattering a mile a minute. I don't think he even took time to take a breath!

Which is a good thing since his morning didn't start out very good. He was kind of quiet during breakfast but he got on the school bus without any complaints. Unfortunately, shortly after getting to school, he wound up in the nurses office with a belly ache. The school nurse said he laid down for a couple of minutes and then seemed better and went back to his classroom.

If I had to venture a guess, I would say that Michael is a little apprehensive about his EEG on Wednesday. We explained to him what they were going to do and tried to reassure him that it wouldn't hurt at all but I think in the back of his little mind, he is still worried (that is just the way he is). I will be so happy when the day comes that all of these medical tests and procedures are few and far between. Please keep Michael in your thoughts and prayers, JoAnne.

And then there was one...

2009-04-05T21:14:00.007-04:00

Jeff & Michael went to chemo on Friday while I stayed behind and got caught up on some work at the office. Jeff said everything went fine. Michael's platelets were a little low because he is fighting off a cold but his white counts were good. The only unusual thing was that Michael didn't fall asleep during his treatment like he always does. And although he took a nap in the car on the way home, he had trouble falling asleep and was awake until almost midnight (which is way past my bedtime). The good news is that Michael hasn't been sick at all since Friday! And the best news is that now there is only one more treatment left.

We will be going to Rochester on Tuesday night for an appointment on Wednesday. Dr. Wang (Michael's neurologist) wants to do an EEG to see if he can detect any seizure activity. If there aren't any seizures, we can try weaning Michael off of the anti-seizure medicine he has been on since July 2007. Even though the bulk of the tumor is gone, the scar tissue can still cause seizures but let's hope that isn't the case. That would be a big relief. There is a danger of organ damage with these types of medicines so I would really love it if Michael could stop taking it.

Michael has to be "tired" for his EEG so the plan is to keep him up very late Tuesday (probably by swimming), get him up early on Wednesday and then spend the morning at the toy museum playing hard. His test isn't until 2:15 pm but we knew that if we drove to Rochester on the day of the test, there would be a good chance that Michael would fall asleep in the car (he always does on long trips) and then wouldn't be tired for the EEG. That is why we are going down the night before.

So, we are going to have a very busy week - we'll be in Rochester Tuesday and Wednesday for lots of swimming, playing and an important medical test. We will be in Syracuse for our last chemo treatment on Friday and then we are traveling to Jeff's Aunt's home in Albany for Easter dinner on Sunday. Of course things have been kind of hectic here for the last couple of weeks anyway. Jeff flew to Indiana for a week of special training a few weeks ago and spent most of last week in Buffalo for the same reason. He got home just in time to make it to Michael's square dance show Thursday night - which was awesome.

Michael even dressed the part with a cowboy hat, plaid shirt, blue jeans and John Deere cowboy boots.

Michael and his dance partner did a great job!

They did two separate routines and all of Michael's classmates danced their little hearts out.

In other news, Brian has a wonderful new girlfriend, Jeanine, and we have actually been seeing them a lot lately (thank you Jeanine). Michael is absolutely loving the time he gets to spend with them. Hopefully with the passing of winter, we will get to see Jenny and Ralph a little more also.

I will post and let everyone know how things go on Wednesday. Please keep Michael in your thoughts and prayers, JoAnne.

Is this just normal curiosity?...

2009-03-31T17:00:00.002-04:00

I don't know if I have mentioned but I plan to print this blog as a book for Michael when we are done with chemo. And since chemo has been pretty routine lately, I have decided to share some Michael stories with all of you that I find humorous or meaningful that I would like to be remembered. Here is one of those stories.

Michael seems to have a lot of questions lately about what happens when we die - and he has only had more since we lost Chance. Not in a scary way but just in the curious way of a five year old. And I am trying to decide if it is an "age" thing or an "I have a bump in my head and spend a lot of time at the hospital" thing. I know I am probably worrying about nothing but Michael first asked about dying on July 22, 2007 so it is kind of a sensitive subject for me.

"How in the world can she remember the date?" you may ask yourself. Well, let me tell you the story.

Michael was 6 months old when my mother passed away. She and I were very close and the thing that made me the saddest about her passing was that Michael would never have a chance to know her and vise-versa. When Michael was born, my mother knew her time with us may be short so she always wore Vanilla Fields perfume when she was around Michael so that whenever he smelled vanilla, he would subconsciously remember her (she had read that somewhere).

In my own way, I have tried to keep her alive for Michael by showing him pictures and telling him stories about her. To explain where she was now, I simply told him that she had been very sick for a long time, had gone to the hospital, and they couldn't make her better so she had gone to Heaven. (Can you see where this is going?)

Well, the very first night we were in the hospital in Rochester (July 22, 2007) it was just Michael and I in his hospital room. Everyone else had gone to the hotel so he and I were settling down for the night. Out of the blue he innocently asked me "Mommy, why do people in the hospital go to Heaven? Why can't they just go home?"

He had voiced my worst fears out loud and I remember feeling my heart sink. And I knew what his sharp little mind was thinking - he had been sick for a long time, he was now in the hospital and...

To be honest, I can't remember what I told him but whatever it was, it satisfied him because he laid down quietly and went to sleep. I, on the other hand, sat by his bed in the dark and cried for hours.

I am happy to report that Michael now understands that the kind of sick my mother was and the kind of sick that he is are VERY different and that he will always be coming HOME from the hospital. Since that night, he has asked about cemeteries and what happens when people die - just normal curiosity. But lately he seems to be asking with more frequency.

My Dad has kept my mother's remains with him - in a box, on the dresser in the bedroom they shared. Someday, when the time comes, they will go to the cemetery together. That's the way he wants it. Whenever I visit Dad, I make a point of going into the bedroom and paying my respects to Mom.

A couple of weeks ago, as I was saying hello and telling her how much I missed her, Michael wandered into the room. He asked me what I was doing and I explained to him that the blue box contained the remains of my mother and I was visiting with her. He said "oh" and went back to the living room to play with his toys or try to make friends with the cat or eat Dad's cookies or something.

A couple of weeks later, I was watching a news program and a gentleman was talking about his late wife and showed the box with her remains. Michael looked up from the picture he was drawing and said "Look Mama. That is just like your mother."

"Yes. It is," I answered.

And with that, Michael went back to drawing. Then, without looking up he asked the question I had been both waiting for and dreading. "How did they get your mother in that little box?"

I have always been honest and straightforward with my children and my mind raced on how to explain cremation to a 5 year old without totaling freaking him out. I took a deep breath. Looked him straight in the eye and said "I don't know Buddy."

He thought about that for a moment and said "Oh. Well. Pop-pop is old so when he dies we'll find out how they get them in that little box."

I guess I should be comforted by the casual way with which Michael asks his questions. On the other hand - Dad's afraid that Michael always gets what he wants and Michael wants to know how they are going to fit him in that little box...

Please keep Michael in your thoughts and prayers, JoAnne.

We're in the home stretch...

2009-03-26T20:41:00.005-04:00

Michael had his third to the last chemo treatment today. We had a nice surprise when we arrived at the hospital - Bearamy, from Build A Bear, was in the unit and he had a stuffed friend and an outfit for each of the children there. Michael chose a bunny and then dressed him in a soccer outfit complete with a ball and shin guards.

There were no problems with his blood counts or the medications today but he seemed very tired all day. And when we were leaving the hospital, he was having a problem lifting his feet. He tripped a couple of times but was holding my hand so he didn't fall.

A similar thing happened last week. After we got home, Michael was watching one of his favorite cartoons while I made dinner and I heard a loud "thud". I hurried to check on him and found him on the floor in front of the TV. He always dances during the theme song to the show and when he tried that night, he fell because his arms and legs were "too heavy". Dr. Kennedy feels this is a side effect of the Vincristine and since he will only receive that particular drug one more time, hopefully these feelings will go away very soon.

I also learned a valuable lesson last week that I would like to share with you in hopes that you will learn from my mistake. If your child likes to snuggle in your bed during the night and if your bedroom has beige carpet and a white quilt - Do Not, under any circumstances, feed your child spaghetti with tomato sauce and strawberry ice cream for dinner if there is any chance he may be ill during the night. Yep - I learned that one the hard way. When Jeff got home from work at 12:30am, he found Michael throwing up, the washing machine running and me scrubbing the carpet next to the bed.

Michael was still vomiting when the sun came up so we kept him home from school on Friday. Jeff was home with him and our little buddy was finally able to keep some Zofran down in the early afternoon so by the time I got home from work, he was back to his old self. He had no problem taking the Zofran tonight so I am hoping tonight goes better than last week. If not, we had a very bland, colorless dinner tonight!

I moved next week's treatment to Friday since Michael is in a square dance demonstration at school Thursday night and we don't want him to miss it. I've had some computer problems of late so I don't want to download any of my pictures right now. As soon as I fix the problem, I do have some pictures to share with you. In the meantime, please keep Michael in your thoughts and prayers, JoAnne.

We're breathing a sigh of relief...

2009-03-09T20:47:00.002-04:00

Last week, Michael came down with a cold and has been fighting a fever since Thursday evening. And since his counts from the last chemo treatment were 550, that meant if he fever went above 100.4, we had to discuss him being admitted to the hospital. Fortunately, his temperature went as high as 100.4 but no higher. And since yesterday, his temperature has been normal. Phew! But, judging by the little bruises all over his body, I have to say that his counts are probably still very low.

Michael's appetite has been terrible also. He is complaining that things taste funny to him and is even turning away from his favorite foods. He lived on grapes, bread and butter and cranberry juice for most of the weekend. And he insisted on taking bread and butter instead of a sandwich in his school lunch today. I am happy to report that he ate a great dinner tonight so I am hoping that we are over that hurdle also. He has lost over 2 pounds that we now have to work on putting back on.

Michael went back to school today (I kept him home Friday) and had a great day. When I picked him up from the after school program, he took me to his classroom to show me that he had won a weekly award from the Physical Education teacher. I am so proud of him! In spite of fighting a brain tumor and enduring chemo, his attitude in gym class was awesome enough for the teacher to recognize him. I will share a picture of the award if he gets to bring it home.

Please keep Michael in your thoughts and prayers, JoAnne.

A heavenly email from Michael...

2009-03-04T19:54:00.003-05:00

We went to the school tonight to sign Michael up for t-ball this summer and on the way home Michael noticed a very bright star. He decided that this star was actually God and that my Mom and Chance were with him looking down on us. He blew 2 kisses to the star - one for Mom and one for Chance - and then asked me if we could send an email to God. I told him we would give it a try and here is what he has to say: (I'll wait while you get some tissues)

To: God

From: Michael

Dear God,

Please say hello to Chance and tell her I love her and miss her very much. And please say hello to my Mom's mom for her and tell her she loves her and misses her, too.

Love, Michael.

Please keep Michael in your thoughts and prayers, JoAnne.

P.S. When Michael started to get a fever last weekend we were afraid he might have to be admitted to the hospital (because his counts are so low). We decided that would have been a more complicated trip if we had a puppy to worry about so we have decided to wait until the end of chemo to bring a new friend home.

No fever today...

2009-03-02T19:24:00.003-05:00

Michael had a good night's sleep and when he woke up this morning his temperature was back to normal. I think he may have just gotten worn out from playing hard with his siblings all weekend (they were home). So, he went to school today and he said he had a great day. Today was his day to bring snack for the whole class so he took Lemon cookies for this week's letter - "L". Please keep Michael in your thoughts and prayers, JoAnne.

Dog tales...

2009-03-01T19:38:00.005-05:00

Michael decided our four legged house guest needed a name and we should call her Big Dog. She slept soundly on Michael's bed with him until the wee hours of the morning. When Michael made his nightly trek into our room, Big Dog was right on his heels and she promptly settled into Chance's bed.

I was really concerned that Michael would get too attached to her but he was fine when we took her to the SPCA early Saturday morning. He was just worried that her "real" family was looking for her. Actually, it was Jeff that became very attached to the dog in the short time she was with us . We talked about keeping her if we couldn't find her family but, to be honest, I am glad it didn't come to that.

As soon as we walked in the SPCA, the guy working there said he recognized Big Dog (her real name is Harley) and that she was a "frequent flyer." Apparently she escapes from her owners on a regular basis and whoever finds her brings her back to the shelter. That means if we hadn't found her family and had adopted her, we probably would have spent a lot of time searching for her. (And that is stress I just don't need.) So, for now Big Dog is back with her family and we are looking for a new member to add to our family.

Jeff and I both love Golden Retrievers and we know they are a good dog around children. We have been in contact with a couple of groups that rescue dogs -one in Connecticut and one in Tennessee - that currently have golden mix puppies looking for forever homes. These groups have networks of volunteers that transport the dogs so getting one brought closer to us shouldn't be an issue. I'll let you know if one of them works out.

I have to share a funny story about our trip to the SPCA yesterday. Michael LOVES cats but I am deathly allergic to them so we can't have one. Michael really bonded with one of kittens waiting to be adopted at the shelter. He asked me if when I die, will I still be allergic to cats and I told him that no, I wouldn't be. We had told him that when you die, whatever was wrong with you goes away and you are all better. That in heaven, Chance's legs are all better and that she is happy running and playing with all of the other dogs. So Michael turned to his father and asked, "When Mom dies, can we get a cat?" I would be offended except Jeff told him they could just trade me for the cat and Michael got upset and said he would rather have me. (Phew - that was close.)

Now on a serious note - Michael isn't feeling well today. He was fine all weekend but when he woke up from an afternoon nap, he started complaining that he didn't feel well and was very tired. He can't be more specific on why he doesn't feel good but he does have a low grade fever of 99.6. Since his temperature is below 100, I 'll keep a close eye on him and call Syracuse first thing in the morning to see what they think. I know his counts were very low last week so I am a little worried. I will keep everyone posted. Please keep Michael in your thoughts and prayers, JoAnne.

Freaky Friday...

2009-02-27T19:59:00.006-05:00

Late this afternoon, Jeff and I took Chance to be put to sleep. It was a very emotional trip for us. Afterwards, we picked Michael up from his after school program and brought him home to break the sad news to him. As expected, Michael didn't handle our loss very well. The 3 of us sat together on the couch until the emotional storm had passed. Then I went to the kitchen to start dinner while Michael and Daddy sat quietly together watching one of Michael's favorite cartoons.

Off our kitchen is our laundry room and off the laundry room is our garage. While I was making dinner, I thought I heard an animal scratching at the laundry room door. I started towards the laundry room and all of a sudden a dog jumped up in the window of the door that leads to the garage.

I threw the biscuits I was making and immediately started screaming and crying. My emotions were still raw and a dog at the door totally freaked me out. Jeff came running to see why I was so panicked. He looked out the door and there was a dog looking back at him. He went out and checked the dog's collar. She had a license and a tag indicating that she has been micro chipped. But when Jeff called the microchip company, he was told that the owners never registered the dog so they couldn't tell us who she belongs to.

So, we have brought her in the house for the night since it is snowing and the temperatures are supposed to drop below zero tonight. Tomorrow we will call the SPCA (she has a tag from them also) to see if they can help us track down the owners. In the meantime, she is pretty comfortable with us. She went to Chance's toy basket and out of all the toys, picked up Chance's favorite. She also laid down in front of the fireplace where Chance always laid.

Now, she is cuddled up next to Michael in his bed. I think it has eased Michael's pain to have a dog with him tonight. Jeff and I are wondering if she was sent by Chance as a sign that she is okay. I know not everybody believes in that sort of thing, but we do.

My Aunt Florrie believed when you lost someone you loved, a dog came into your life. For instance - when my mother passed away, someone gave my Dad a stray dog that has totally taken over his life. Aunt Florrie believed that Girl was sent to Dad by Mom. Now that Aunt Florrie recently went to heaven herself - did she send this dog to comfort us in our grief?

Even if we find her owners and return her to them, she has made this first night without Chance easier to bear for all of us. Please keep Michael in your thoughts and prayers, JoAnne.

Today was a no go...

2009-02-26T20:29:00.003-05:00

Michael and I went to chemo today but unfortunately his counts were too low to receive treatment. The good news is that there were no problems with his port. And, he is totally recovered from whatever knocked the wind out of him last weekend.

We now have a 2 week break before we go back for chemo and then it will be the beginning of our last round. Funny thing is - Michael is not dealing with the end of treatments very well. I know that probably seems strange to everyone but Michael doesn't take any kind of change well. And this has been his routine for over a year. On top of that, he has become very attached to the doctors, nurses and staff he sees every week. We will keep him talking about his feelings and hopefully he will work through them.

Unfortunately Chance has taken a turn for the worse and tomorrow we will be taking her to the vets office to be put to sleep. Jeff and I have very heavy hearts tonight. We haven't broken the news to Michael yet but I am sure he is not going to handle it very well. Please keep Michael in your thoughts and prayers, JoAnne.

I hate to say "I told you so" but...

2009-02-23T20:06:00.005-05:00

Remember the other day when I said that I was not comfortable with the way the nurses handled Michael's port when we were in the Emergency Room on Saturday? Well, this morning I was replaying the whole ordeal in my head and I thought, "They didn't flush Michael's port with Heparin before they removed his needle." I called Jeff and asked him if he remembered the nurses giving Michael Heparin and he said he didn't. (Heparin is a blood thinner which is injected into his port before they remove the needle to prevent clotting and to keep it working correctly.)

So, I called Syracuse and talked to Jen, our nurse, and asked her if it was a big deal if they didn't use Heparin and she said it was. Then Jen called our local ER and asked them to check Michael's records to verify if they gave Michael Heparin or not -and they didn't. So - off to Syracuse we went. Jen accessed Michael's port (perfectly). She was able to draw a clot out of the it so I am really glad we made the trip to Syracuse. Then she flushed it well with saline and Heparin and we were back on our way home.

Unfortunately, Michael had to miss most of the 100th Day of School Celebration at school. But, I have to admit that my mind is a lot more at ease tonight knowing that his port was checked by someone that works with children's port-a-caths everyday, all day. I will keep everyone posted of any new developments. Please keep Michael in your thoughts and prayers, JoAnne.

Today was a little bit better day ...

2009-02-22T20:59:00.004-05:00

Michael had another restless night last night. He tossed and turned but when I asked him if his belly hurt, he said no. I think he was afraid to admit to the pain since he thought he would have to go back to the hospital. But at least the pain wasn't anywhere near the level it was yesterday morning. The good news is that he hasn't thrown up since before he fell asleep last night.

He also started out kind of slow this morning but picked up a little speed as the day went on. He laid in bed watching cartoons and sipping on cranberry juice as his day began. By late morning, he was hungry for french toast and had ventured out to the living room. We kept him as quiet as we could for most of the day but by late afternoon, it wasn't easy. And, his appetite was down but at least he ate and drank some today.

He is now laying in bed but is again restless and can't seem to fall asleep (he is usually asleep by 8 pm at the latest). He's still very pale. Tomorrow is his first day back to school after last week's vacation. It is also the 100th Day of School Celebration which he has been looking forward to. Let's hope he feels well enough to stay all day and participate. Please keep Michael in your thoughts and prayers, JoAnne.

A little bump in the road...

2009-02-21T21:42:00.003-05:00

Earlier this week, I traveled out of town for a few days for the funeral of a truly wonderful lady, my great-aunt Florie. While I was sharing many tears and a few laughs with family I don't see often enough, Michael and Daddy were on their own. Apparently they had fun together and even went to Friendly's for dinner - where Michael got to make his own sundae.

I returned home on Wednesday night. My Dad and I drove through snow for most of the day and the last 70 miles were especially nerve wracking. It was snowing heavily and the snowplows didn't seem to be ahead of us anywhere so it was hard to tell if you were in your lane and sometimes if you were even on the road. On Thursday morning, Michael and I retraced that route to make our way to chemo. The trip down was uneventful but the ride home was again stressful as all the snow that had fallen the night before was being kicked up by high winds and was being added to by another snowfall.

Chemo went without a hitch. Dr. Kennedy was on vacation and we saw one of her colleagues, Dr. Sills. Michael's counts were down to 38,000 but Dr. Sills gave Michael his treatment anyway. He just warned me to watch for any signs of excessive bleeding and to call if I noticed anything.

Michael had a good day on Friday. It was the last day of his mid-winter vacation from school and it was Daddy's day off from work. When I got home from work, they were both tired from a day of playing long and hard. When we sat down to dinner, Michael said his stomach hurt and he didn't want to eat anything. Jeff said he had eaten well all day, so we let him go and lay on the couch.

Around midnight, Michael woke up and vomited for the first time. He then woke up frequently during the night to be sick - complaining each time that his stomach hurt a little more. When morning came, we coaxed him into eating a little toast and some Rice Krispies hoping the pains in his stomach were just hunger pains. But by 10 am, Michael was holding his stomach and screaming out in pain (which is not something he had ever done before). He would doze off to sleep only to be awaken by the excruciating pain.

Whenever we mentioned calling the doctor, he said his stomach felt better and would settle down for a little while. Around 1 pm, we realized that he wasn't getting better and called the doctors in Syracuse. They told us to take him to our local emergency room and they would be in contact with the ER. So, off we went.

When we got there, they took some chest and stomach x-rays. Michael was so sick, he had a hard time sitting up while the technician snapped the pictures. And for a few minutes, she had to wait while Michael was sick to his stomach.

Then a nurse in the emergency room accessed Michael's port and drew blood to have some lab work done. Next, they gave Michael some IV fluid with both a medicine for the nausea and Morphine for the pain. The Morphine worked quickly and Michael was finally a little more comfortable (even though he continued to throw up all day and into the evening).

All of the test results - blood, urine and x-rays - came back normal and the doctor feels Michael has some sort of stomach virus aggravated by the chemo. He gave us an anti-nausea drug to give our little buddy in addition to his Zofran so hopefully his stomach will settle down quickly. We also have to keep him on clear liquids for a while.

If Michael doesn't get better, the doctor told us to bring him back and they will have to admit him. If it comes to that (and we are praying it doesn't) we will probably take him to Syracuse. I wasn't comfortable with the way the nurse accessed his port (you could tell it wasn't something she did every day) and I would just feel better if he was under the care of Dr. Kennedy and the nurses at University Hospital (and I know Jeff feels the same way).

Michael has been sleeping peacefully since we got home around 8 pm. Let's hope he sleeps through the night. He had terrible black circles under his eyes and he looked so exhausted today it was heartbreaking. Jeff and I could use a good night's sleep, too. I will keep everyone updated. Please keep Michael in your thoughts and prayers, JoAnne.

A half-dozen treatments and counting...

2009-02-13T18:45:00.005-05:00

Yesterday was Michael's chemo treatment and everything went smoothly again. Dr. Kennedy said Michael's counts were down so she thinks he may be coming down with something. But so far, he has been healthy. We were happy to see one of Michael's regular nurses, Sharyle. Between her vacation, our going on Mondays for a while and the holidays, we hadn't seen her since November.

Michael had a great day today. He feels perfect and enjoyed his Valentine's Day party at school a whole bunch. Now he is giving Chance a physical. He has declared she needs Vitamin C for her bad leg and there is nothing he can do about her bad breath. Chance is just happy for the attention.

Michael has treatment on Thursday again next week and I am considering keeping his treatments on that day. He doesn't seem to be getting sick so Thursday treatments shouldn't interfere with school on Friday. And, Jeff & I met a little boy and his mother at clinic yesterday that I would like Michael to meet (he was busy sleeping). You see, Trevor is the same age as Michael, is on the the same chemo regimen, has an Astrocytoma brain tumor and a port and even has glasses like Michael. Michael has met other kids at treatment but Trevor is the first child Michael's age that has so much in common with Michael. I think it would be good for him to meet and spend some time with a little boy "like him" and Trevor gets treatments on Thursdays.

I will post if there is anything new. In the meantime, please keep Michael in your thoughts and prayers, JoAnne.

Catching up a little...

2009-02-10T19:00:00.005-05:00

I know I didn't post last week like I should have but I have a good excuse. Since we saw that last MRI and we know that the end of chemo is in sight - Michael's tumor is not the only thing on our minds for the first time in a long time. We actually feel like a horrible weight has been lifted from our shoulders and life has begun again. The 800 pound gorilla that has been sitting in the corner of our home has moved out!

We did start Michael's second to last round of chemo last Thursday and everything went great. We had to reschedule from Friday to Thursday because of Michael's busy social calendar! And since school was cancelled on Thursday due to the funeral of a former administrator, he didn't have to miss school.

Friday was the annual sledding party at school which Michael missed last year because of chemo (and he has reminded me often that he missed it). Then after school, he had a "soccer" birthday party at the YMCA for one of his friends. On the way home from the "Y", he told us that it was "a great day". Then later, he was laying on the floor with Chance and he was smiling.

Jeff said, "You look happy, buddy."

And Michael responded, "I am happy, Dad." I thought my heart was going to burst with joy.

Michael went through an angry period a few months back but seems to be over that. Even his teacher commented on how happy he seems now. And of course he is looking forward to the end of chemo. Every morning he asks me how many more treatments he has left - and after last week it is 7.

Since our good report a couple of weeks ago, it has been easier to think of life beyond chemo. We even booked a house on one of the beaches in Cape Cod for a week in July! We are going to sit on the beach and play in the surf and sand for a week and do nothing but have fun.

Michael's chemo is on Thursday again this week due to the Valentine's Day party at school on Friday. He's excited and counting the days. He bought a box of Transformer valentines for the boys in his class and a box of Disney Princess valentines for the girls.

I am happy to report that Michael hasn't been sick once since his treatment last Thursday (and that's a first). Let's hope he feels as well this week. Please keep Michael in your thoughts and prayers, JoAnne.

P.S. Michael brought his 2nd quarter report card home last week and Daddy & I are very proud of him. He got the highest mark in every category except "cuts accurately" and "traces patterns correctly" where he was marked "shows improvement". His teacher commented "Michael seems much happier and seems to be enjoying himself more. It's great to see! He has mastered 23 sight words! Great job!" In fact, when Michael and I were reading his bedtime story last night, he said "Let me read it to you, Mama." And he did.

This is Michael's brain on...

2009-01-22T18:35:00.004-05:00

...chemotherapy drugs.

Okay - bear with me while I try to explain the AWESOME news we got today. This is one of the images from Michael's MRI yesterday (one of over 1,600). If you draw an imaginary line from the top of the picture to the bottom, you visually divide the picture in half vertically. Near the center of the image horizontally and just left of center vertically, you will notice a circular spot that is lighter in contrast (it kind of looks like an eyeball to me but it's not) - this is actually the void left by the craniotomy in August of 2007. In other words, that is how large the tumor originally was (pretty big and scary huh?). It is my understanding that that space will always be there.

Now - near the top of that circle and adjacent to the right is a darker spot - that is all that is left of the tumor now. In previous MRI's, the whitish line across the top of this spot was curved upwards where the remaining tumor was pushing against the brain. As you can see - it is now almost perfectly straight! That is because the tumor has shrunk considerably!

To make it easier to understand - Jenny marked up a copy of the MRI image (below). The big red circle is the part of the tumor that was removed surgically and the smaller green circle if what is left.

Dr. Korones is thrilled and thinks Michael is doing "better than average". We know that we have been extremely lucky because:

1) Michael didn't suffer any neurological damage from the original surgery. Many kids have problems with memory and motor skills, Michael doesn't.

2) Michael hasn't been as sick as he could have been during chemo. We haven't had any big delays, he hasn't had to have any blood transfusions and there's been only one hospital stay in the last year. Dr. Korones said that many kids on this regimen can't finish because they get too sick but it looks like Michael is going to make it to the end.

3) The tumor is responding to the chemo drugs. We are seeing dramatic results and that has to been a sign of good things to come.

So, it looks like all of the positive thoughts and numerous prayers are working. We know everyone has been pulling for Michael and we thank you from the bottom of our hearts! Keep up the good work.

Sorry I left everyone hanging yesterday but I woke up in the morning covered in hives (which I have never had). I called my doctor's office and they suggested taking Benadryl. So, while Michael and Daddy spent the afternoon in the hotel pool - I was sound asleep in the room. I woke up long enough to get some dinner before going back to sleep. My doctor thinks the hives might be from stress (what stress?!?).

I was very proud of Michael yesterday. He got up early and spent a couple of hours in the pool. Then he laid down in the room and took a little nap until it was time to go to the hospital. He was very hungry but never complained. I took some snacks with us and before they put him under the anesthesia, he told me to be there when he woke up - with his snacks. Well, of course we were in the waiting room so he sent the nurse out to get his mother with his "Lunchable" -which he wolfed right down. Then we went back to the hotel and he swam for a couple of more hours before having a nice dinner and calling it a night.

Now we are home and happy to be here. It's back to school and work tomorrow. For some reason Jeff & I were both extra nervous this time around but I'm sure we'll sleep better tonight. Please keep Michael in your thoughts and prayers, JoAnne.

P.S. I asked Dr. Korones if he thought Dr. Pilcher (the neurosurgeon) would still want to do surgery to remove the remaining tumor and his response was "no". He said that he thought that Dr. Pilcher would think that there isn't enough tumor left to warrant the risks of surgery. More great news !

We're here again...

2009-01-20T21:22:00.003-05:00

We've made the journey to Rochester, have gone for a swim and are now settled into our room for the night. We have to be at the hospital tomorrow at 1pm and Michael's MRI is at 2pm. That is not good news since Michael can't eat anything after midnight tonight. He is having a little snack right now and hopefully he won't be too hungry while waiting tomorrow.

We won't get the results of the MRI until Thursday around 1pm but I will post again tomorrow night to let everyone know how the day went. Please keep Michael in your thoughts and prayers, JoAnne.

There is an end in sight (and other good news)...

2009-01-12T19:07:00.006-05:00

Jeff and Michael made the trip to Syracuse without me today. (Although, I have to be honest - I may have been here physically but I was with them mentally.) Jeff said everything went smoothly and that Michael's platelets are back up over 200,000. Apparently, Dr. Kennedy was pleased with the speed which Michael's counts rebounded.

Jeff said that Michael told Dr. Kennedy that he had that "funny feeling" the other day but forgot to tell Jeff & I about it so I am not sure what to make of that. I think only time will tell if this is something we need to be concerned about or not.

For now, my little buddy just finished a banana split and is cuddled on my shoulder watching Mickey, Donald and Goofy: The Three Musketeers. I don't think it will be too much longer before he is sleeping peacefully for the night. Hopefully he has a good night and doesn't wake up sick.

With today's treatment, Michael is now on a break. He doesn't go back for chemo until Friday, February 6th and that will be number 8 in the countdown to the end of treatments. It's hard to believe it has almost been a year since we started this part of our journey and that it will soon be over.

When Michael woke up this morning, he said to me, "Only nine more treatments and then no more needles every week." I guess it is understandable that he will be the most excited of all of us to see the end of chemo.

We go to Rochester next Tuesday night for Michael's next MRI on Wednesday and our appointment with Dr. Korones on Thursday. Until then, please keep Michael in your thoughts and prayers, JoAnne.

Some new news...

2009-01-06T20:15:00.002-05:00

Dr. Kennedy called today and said that Michael's Tegretol level is high enough that she doesn't believe he is having breakthrough seizures. She wants us to keep an eye on him and give her a call if his "funny feeling" comes back (which so far hasn't happened). I will update if there is anything new. Please keep Michael in your thoughts and prayers, JoAnne.

Michael's counts are up ...

2009-01-05T20:49:00.003-05:00

We made our weekly trip to Syracuse for chemo today. Michael's platelets are finally back up near the normal range at 104,000. Treatment went smoothly and the weather was very cooperative today. My little buddy had some dinner when we got home and then fell asleep cuddled up next to me while watching America's Funniest Videos (his new favorite show). Life's little moments don't get any better than that!

Michael went to a birthday party yesterday for his best buddy from school, Cory. He was so excited and had a great time. A little while after he got home though, he complained that he felt "funny all over". He became very distraught and said he had to lay down (which he did). A little while later, it happened a second time. Both times, he felt better after laying down. I'm sure you will understand when I say that this has Jeff & I in a state of panic. A "funny" feeling in his nose is how we discovered the brain tumor a year and a half ago.

Today, Michael told Dr. Kennedy about the incidents and she thinks it may be some type of breakthrough seizure activity. She said that the anti-seizure medicine Michael is taking is based on body mass and we haven't adjusted the dosage since his diagnosis in July of 2007. And he has grown quite a bit since then. This was disheartening to hear since we were hoping to start weaning Michael off of his anti-seizure medication soon. We didn't leave Syracuse with any definitive answers today but I will keep everyone posted on any new developments.

Michael's next MRI is in 3 weeks so now we will be on pins and needles until they tell us that the tumor is still shrinking. Please keep Michael in your thoughts and prayers, JoAnne.

A little bit of Christmas...

2008-12-30T21:09:00.006-05:00

As I mentioned in my last post, we got a couple of feet of snow the weekend before Christmas but Michael didn't mind ...

... and after he spent some time outside shoveling snow with Dad ...

... Michael and I made some special Christmas ornaments. I know it is hard to see in this picture but we took some felt snowflakes and added some spray adhesive and iridescent glitter ...

... then we added some pretty heart charms and a sparkly ribbon ...

... and we were done ...

... and they were beautiful. We took several dozen with us to chemo on Tuesday as a small "Thank You" to Dr. Kennedy, the nurses and staff of 5C.

On Christmas Eve, we had a nice dinner. Brian, Jenny and Ralph came to spend the night so they would be with us at Christmas's first light. My Dad and Jeff's Mom also joined us for dinner.

Then there were some family Christmas traditions...

... such as the reading of "The Night Before Christmas" ...

... and a snack of cookies and milk for Santa and carrots for his reindeer before heading to bed.

Michael woke up at 4 am on Christmas morning and asked Daddy in a very loud "whisper" if it was time to get up yet. Daddy told him it was still very early and that we should wait a little while.

So, Michael settled back to sleep until 7 am before we finally got up and headed to the tree to see what Santa had brought.

Michael started with his stocking ...

... before moving on to his pile of presents. This was the year of Transformers and dinosaurs in our house. Michael also received some police and pirate Playmobil toys, a couple of Nerf guns, a remote control helicopter, some books and a Leap Frog tag reading system. And from Aunt Denise and cousin James in Alaska, he received a pile of presents including a pair of John Deere cowboy boots and a box of Alaska socks.

And of course there were a couple of boxes of clothes that included a new bathrobe.

There was organized chaos as everyone opened their presents and having all of my kids home on Christmas morning was the best present I could receive.

We were joined on Christmas day by my Dad (and his dog, Girl) and Jeff's Dad. During our Christmas meal, we used the Giving Tree we received from the Norfolk family as a centerpiece. And their brother, Patrick, was never far from my thoughts this Christmas season.

I'm sorry to say that Michael has been sick on and off since last evening. He hates taking his Zofran (for nausea) and has to be cajoled, bribed and browbeaten in order to take it. He always feels better after he does but he doesn't like the taste. I took it to our local pharmacy tonight and they flavored it watermelon (at Michael's request) so I am hoping that will make it easier for him to take.

We are planning to go to Upper Canada Village tomorrow afternoon (our previous plans got snowed out) but riding in the car seems to exacerbate Michael's nausea so we will see how he is doing tomorrow. Please keep Michael in your thoughts and prayers, JoAnne.

Another week done...

2008-12-29T19:42:00.003-05:00

Michael and I had a good trip to Syracuse today. The weather was clear and chemo went without a hitch. Michael's platelet counts are still very low (34,000) but at least they haven't dropped any lower. Michael is bruising very easily. He bumped his leg on the corner of the coffee table last week and we actually watched the bruise form - it was that quick. Dr. Kennedy commented that the steroid, Predisone, that Michael receives with his chemo will help his body make new platelets and it makes me wonder how low his counts would be if he wasn't receiving the steroid.

Michael is pretty tired these days. We got home around 6:30 pm tonight and he was already asleep and we put him right to bed. He also fell asleep on the couch on Christmas afternoon around 4:30 pm and slept until 9 am the next morning. Hopefully all this sleep will do him some good.

Michael had a great Christmas (he wasn't sick at all) and I will tell you all about it in the next couple of days. We had gotten a couple of feet of snow the weekend before Christmas and heavy rain on Christmas Eve and on Christmas morning we woke up to a flooded basement. It seems that the drainage ditch in front of our house couldn't keep up with runoff and backed up into the special drainage system we had installed under our house when it was built.

The town is going to come and fix the ditch and we are going to move the outlet to our drainage system to a different spot so we don't have that problem again. We had a lot of junk down there that we wanted to get rid of so that we can put in a family room and I can tell you nothing motivates you to get rid of stuff like 2,000 square feet of wet, smelly junk. So, now we have a dumpster in our driveway and an almost empty basement. That is how we've spent the last few days so I will catch up with you and share our Christmas in the next day or so.

Please keep Michael in your thoughts and prayers, JoAnne.

A quick update...

2008-12-23T22:49:00.006-05:00

Because of bad weather, we didn't go to chemo yesterday but rescheduled for today. Everything went well with chemo but we were told that Michael has a condition (not related to chemo) called Immunoligic Thrombocytopenic Purpura (or ITP for short).

ITP is where your immune system attacks your healthy platelets thereby making your counts low. The danger in this is that it can cause uncontrolled bleeding. Normal platelet counts are between 150,000 and 450,000. Michael's were 31,000 today. So now we have to watch for signs of bleeding (bloody noses, bleeding gums, excessive bruising, etc.) and be careful that he doesn't hit his head. Dr. Kennedy said that she isn't too concerned as long as his counts stay above 20,000. ITP goes away by itself in six months or less in 80% -90% of the cases with no treatment. Let's hope that is the case with Michael.

Christmas has started for Michael. The company I work for bought Michael a large Transformer which we stopped on our way to chemo for him to receive. He was thrilled! But that wasn't the end. He received a LARGE bag of toys at the hospital. There was a couple of tractors, a book, a 2008 Hess truck, a set of Matchbox cars, a stuffed shark and a Teddy bear.

I have been under the weather the last couple of days (either food poisoning or a stomach bug) so I am behind in my Christmas preparations. I will end for now and give you more details in a day or so, complete with lots of pictures. I hope everyone has a Merry Christmas, JoAnne.

We've met some Christmas angels...

2008-12-17T18:16:00.008-05:00

We received a phone call last night from a gentleman who we had never met who had heard about Michael's story and had something he wanted to share with Michael. His name is Fred and he and his wife, Marlene, came to our home tonight to meet our family. Fred comes from a family of 11 children and he had one brother, Patrick, who lost a 36 year fight with a brain tumor in February 2007. To honor his memory, Patrick's family decorates a tabletop Christmas tree with gift cards and money which they then give to someone whose story has touched their hearts. This year they chose our Michael to be the recipient of the "Patrick's 2nd Annual Giving Tree."

Along with the tree, they included a card with Patrick's story in it. With their permission I would like to share his story with you in their words:

"PATRICK'S GIVING TREE HAS COME FULL CIRCLE"

"Patrick Norfolk was our brother, uncle and friend from Watertown, NY. He was stricken at the young age of 11, and again at the age of 20, with a cancerous brain tumor and lived until the age of 47 struggling with the ill effects from the disease. Due to complications following the removal of his first brain tumor, Pat was in a coma for seven weeks followed by several months of speech, physical and occupational therapy. That Christmas, Pat received a tree from the community filled with cards and dollar bills. Throughout the years, Pat never complained and always saw the good in people. His favorite times were those spent with family and his favorite Holiday was Christmas.

Patrick left us on February 17, 2007 but he still remains close to our hearts. We want to keep his memory alive through the Christmas Holidays and what better way to do so but to return the same kindness that was bestowed on him in 1971. Please accept this "Giving Tree" in memory of our brother and friend, Patrick Norfolk, and know that it is given with the same love and compassion he exhibited throughout his entire life."

I think this is a wonderful way to honor their brother's memory and we are honored they have shared Patrick's story with us. Fred (pictured above with Marlene and Michael) told Michael that he has a tractor and he invited Michael to stop by his home in the spring for a ride. So, Michael drew Fred a small picture of a tractor while he was here. He has also drawn a couple of pictures since they left for the "next time" Michael sees them. I think they have touched our little boy's heart (and ours).

Like kids all over the world, Michael is getting really excited about Christmas. Friday is the Christmas party in Michael's class and Sunday we are making our annual trip to Upper Canada Village for their Alight at Night Festival. Monday it is back to chemo but it has been nice having this break right before Christmas. Please keep Michael in your thoughts and prayers, JoAnne

Catching up - Part III ...

2008-12-10T19:48:00.013-05:00

I think we left off with my last post just before Thanksgiving. We had a nice dinner at our house with Brian, my Dad and Jeff's Mom. We had all the traditional fixings and Michael helped Daddy carve the turkey...

The next morning, Jeff, Michael and I had to be in Syracuse by 8 am for Michael's treatment. It was the last week in the fifth round of treatment. Michael's counts were still good and chemo went smoothly (although he was sick through the weekend again). Then, Jenny and Ralph met us at the hospital and when we were done, we went to a local restaurant and had a nice lunch together. Michael was still a little tired from treatment when we got to the restaurant but by the time lunch came, he had perked up and wolfed down a big plate of pasta.

After lunch, the five of us visited the Museum of Science and Technology. Michael had fun checking out the exhibits and then we went to see a showing of "Polar Express" at the IMAX theater in the museum. After the movie, Jenny and Ralph headed south to Ralph's parents in Binghamton and we headed north to home. Just like the previous Friday, the weather on the way home was terrible. (And like the week before - thankfully we made it home safely.)

Michael's class has been learning about admirable human qualities like respect and responsibility. And with each trait, the teacher recognizes students that exhibit those traits. This last week, they learned about bravery and Michael was chosen as a representative for courage. He was given a school bracelet and he was absolutely thrilled! He was so happy when I picked him up that night and I was so proud of him.

Last Saturday morning, we made another "fun" trip to Syracuse. The Pediatric Hematology / Oncology Unit had a Christmas party for the kids and it was incredible. There were crafts for the kids to do...

Michael made an ornament, a polar bear picture frame and a snowman decoration. They also had face painting and a DJ who got the kids singing and dancing. The kids wrote letters to Santa - Michael wrote that he wanted "transformers, a clam digger, trucks and dinosaurs." (We think a clam digger is a type of toy crane but we're not sure.) Then we had a delicious lunch of all the favorite foods of kids - fruit, chicken fingers, french fries and pasta. And for dessert, there were dozens of homemade Christmas cookies.

We also got to see Britney and some of our favorite nurses. Of course, the highlight of the afternoon was the arrival of Santa. There was also a professional photographer who took family portraits as well as pictures of the kids sitting with Santa...

It was a wonderful party and watching these children facing such a difficult time in their lives having fun was very heartwarming.

Tonight, we went to the Christmas concert for the kindergartners at Michael's school...

That's Michael in the middle of the front row with the black pants, light top and Santa hat.

The kids sang "Rudolph, the Red-Nosed Reindeer", "Frosty the Snowman", "All I Want for Christmas is My Two Front Teeth", "Must be Santa" and "Jingle Bells" with all of the enthusiasm of 5 year olds in their first concert.

The next couple of weeks will fly by quickly as we get ready for Christmas. Michael has a break from chemo until Monday, December 22nd. Let's hope he recovers by Christmas day. I may not post much between now and then unless something comes up. If you don't hear from me it means Michael is feeling well and we are enjoying the Holiday season (and the break from chemo).

Please keep Michael in your thoughts and prayers, JoAnne.

P.S. I was contacted by Golisano Children's Hospital in Rochester a couple of weeks ago and they asked me to write Michael's story. I did and submitted it to them. They want to use my little buddy's story in some of their fundraising drives. Tomorrow morning at 8 am, I have to call a radio station in Rochester to be interviewed on air as they kick off their radio-thon. Wish me luck!

Catching up - Part II ...

2008-12-01T20:32:00.004-05:00

Last Monday, Jeff and I attended parent/teacher conferences at Michael's school. We are happy to report that Michael is doing well. He is right on track academically and his teacher said he is doing well socially. And, we couldn't be happier after the rocky start we had to kindergarten.

Here is my little bug's report card:

In the first column, the "plus signs" mean that Michal's skills and behavior are satisfactory and those areas are:

"Listens without interrupting, Works without distracting others, Works carefully and neatly, Plays safely, Is responsible for belongings, Shares, Raises hand to speak, Uses appropriate voice level, Keeps hands and feet to self and Holds scissors correctly".

The "up arrow" means that Michael is showing improvement in those skills and behavior and those areas are:

"Accepts teacher authority, Listens attentively, Follows directions, Works independently, Completes works on time, Participates in activities, Interacts well with others Colors neatly, Cuts accurately, and Traces patterns accurately".

And, there weren't any areas that needed improvements or there would have been "check marks" next to those areas. Yeah!

In the second column, Michael could have an "M" for Mastery (instantly recalls without prompting), "P" for Progressing or "N" for Needs Improvement. As you can see, Michael had all M's. He really is enjoying learning how to read. When we ride in the car or watch TV, he is always spelling out words that he sees and he tries to sound it out. If he can't, he always asks us what the word is. We also have some easy site reader books and Michael can read them all to me and he is just thrilled. And we are so proud of him!

The teacher's comment made Jeff and I chuckle (even though we know it is not funny). "Michael is adjusting to Kindergarten expectations. He exhibits attitude from time to time & wants things his way." Yeah, we knew that and are trying to change it but so far - we're not having much luck. And, considering all that he has been through in his young life, I'm not sure we ever will.

Please keep Michael in your thoughts and prayers, JoAnne.

Catching up - Part I ...

2008-11-30T18:55:00.006-05:00

It has been a while since I posted, so I have a little catching up to do. Michael and I went to chemo a week ago Friday. The ride to Syracuse was an easy one. When we first started out, we passed a tractor trailer with Canadian license plates. I told Michael that I bet he had just talked to Daddy (Jeff works for US Customs and was at work that morning.) So for the rest of the trip we had to check out the trucks to see which ones had just seen Daddy and there were actually quite a few of them. Michael also sang his entire repertoire of 3 Christmas carols all the way down (note to self: teach Michael some new Christmas carols).

It was pretty quiet when we got to treatment so we spent some time coloring with Britney (the child life specialist). I was thinking about how when we first started treatment, we didn't know any of the people that work in Unit 5C. We must have had the look of a deer caught in headlights our first time in the unit. I recognize that look some of the parents that are there now. I can easily tell the ones that are new or just there for a one time visit.

Michael's treatment went well. But the ride home was a nightmare. It was snowing when we left Syracuse and for the first 30 miles or so, we traveled 15-30 mph in whiteouts. Fortunately, it cleared up for a little while before turning to ice closer to home. Our normal one hour drive took almost two hours. But we made it home safely. (We saw a couple of bad accidents along the way.) It's going to be a LONG winter!

Michael didn't have any allergic reactions to the Carboplatin but I have to say he is experiencing the side effects of chemo a lot worse and for a lot longer this time around. He is sick right through the weekends now.

And he sleeps a lot. Jeff was working midnights this past week so he would take a nap after dinner before going to work. He would lay down around 6 pm and Michael would lay down with him and sleep straight through until morning.

Michael woke up vomitting Saturday morning but felt better as the day wore on so we thought we were out of the woods - but we weren't. On Sunday morning, we headed back to Syracuse to go to the semi-annual Build-A-Party for the kids of 5C. Michael was fine when we got up and left the house but got sick before we got to the mall. The storm seemed to pass and we made our way to the party.

Michael picked out a scruffy dog, who he named Ruff...

... who he stuffed with Hugs & Kisses, Love, Kindness, Friendship and a special little heart ...

... then he gave him "airbath"...

... and his new best friend was finished.

This is Michael with Ruff and Britney (5C child life specialist).

Then we visited the food court to fill up Michael's empty belly and to take a spin on the carousel before heading home. The ride home was tense with Michael throwing up all the way but we eventually made it home. He spent the rest of the day doing quiet things and was feeling better by Monday morning.

Over the next couple of days, I will share with you Michael's first report card of Kindergarten, our Thanksgiving and this week's chemo. Please keep Michael in your thoughts and prayers, JoAnne.

Right on schedule...

2008-11-15T20:03:00.002-05:00

Michael woke up around 4:oo am this morning and started throwing up (just like any Saturday when Michael is going to be sick from chemo). Around 5:00 am Michael and I got up so that Jeff could get a little more sleep and he and I watched Kung Fu Panda in Michael's room. He alternated between laughing hysterically and vomiting for the next couple of hours.

After breakfast we took Michael to spend the day with Jeff's Mom while Jeff and I went on a long overdue date. We started our Christmas shopping and then had a wonderful lunch. Fran (a.k.a. Grandma) said that Michael wasn't sick at her house at all. And now, Michael is sleeping peacefully cuddled up between Mommy and Daddy on the couch. I hope that means that the upset tummy is over for this week. Please keep Michael in your thoughts and prayers, JoAnne.

Today went well...

2008-11-14T19:44:00.002-05:00

Michael and Daddy were on their own today for chemo. Jeff said it went smoothly. Michael was asleep by the time they got home and we put him straight to bed. Hopefully he won't be as ill this week as he was last week. Please keep Michael in your thoughts and prayers, JoAnne.

Today is a better day...

2008-11-11T09:38:00.001-05:00

Michael woke up hungry and with a smile on his face so I think he is over his latest hurdle. Please keep him in your thoughts and prayers, JoAnne.

Michael's still down and out...

2008-11-10T19:41:00.002-05:00

Michael had kind of a rough weekend. His poor stomach has gone back and forth between being queasy and hurting. He has been able to eat and has kept enough down that I am not worried about dehydration but keeps throwing up enough to ruin his day. I just feel bad that he doesn't feel well. He woke up this morning and was still vomiting so he stayed home from school. They are off tomorrow for Veteran's Day so hopefully he will be fully recovered by Wednesday. Please keep Michael in your thoughts and prayers, JoAnne.

Michael's counts were good...

2008-11-08T10:42:00.003-05:00

We went to chemo yesterday and Michael's counts were great. His platelets went from 54 the previous week to 147 this week. And his ANC rose from 800 to 1500 so we were a go for chemo. Unfortunately, it didn't go very smoothly.

Michael was almost asleep and was resting quietly while watching a movie so Jeff and I ran down to the cafeteria for a late lunch. We were only gone for a few minutes but when we came back up to the unit, there was a doctor and nurse hovering over Michael. They were taking his blood pressure and asking him how he was feeling "now". It seems Michael had an allergic reaction to the Carbo (this happened once before).

He started complaining that his throat was "itchy" and then he started coughing. Since they already give him antihistamines as part of his treatment every week, they gave him some steroids to stop his reaction. Starting next week, we have to give him another antihistamine at home starting on Thursday to see if that will help. Let's hope so. We can do without the extra excitement.

Although, we did have a pleasant surprise, too. A company named Chromalox dropped off 98 fully stuffed and dressed Build-A-Bears for the hospital to give to the kids. Michael got a bear dressed in pirate pajamas. Each bear came in a box with a tag on it indicating if it was for a boy or girl and what age group it was appropriate for. What a great gesture.

Michael started throwing up around 4 am and is just starting to feel a little better now. Of course, since he hasn't had chemo in over a month, we're not real surprised that Michael is not feeling well. Let's hope his little stomach settles down and he feels well enough to get up and play. If not, we will just have a quiet day. Please keep Michael in your thoughts and prayers, JoAnne.

P.S. Apparently I miscalculated how much longer we have until the end of chemo. Dr. Kennedy said yesterday that we are about half way through and have six months left. Oh well. We'll just take it one week at a time.

It's a "scaredy" bat !!!

2008-11-05T09:06:00.002-05:00

Halloween 2008

(Thanks for the photo Uncle Jeff)

A little overdue update...

2008-11-04T21:07:00.007-05:00

Things have been busy but pretty uneventful since my last post. Michael had his scheduled two week break from chemo since our trip to Rochester. Our most recent trip to Syracuse was on Thursday last week so that Michael wouldn't miss the Halloween parties at school on Friday.

He and I made Halloween cupcakes to take to the hospital staff and Michael took his costume to show everyone. They gave Michael a gift bag with a pillow shaped like a spider (which he loves), some candy and a little thermos. They told us the pillows were made and the bags were assembled by a local Girl Scout troop.

When Dr. Kennedy looked at the slide of Michael's blood, she could tell that his platelets were still low but slightly higher than 2 weeks ago. She decided that if that was confirmed by the lab, she would give Michael chemo anyway. And although the lab did agree with Dr. Kennedy on the platelets, they showed that Michael was also Neutropenic (his ANC was only 800) so she decided to give Michael another week off. She thinks Michael is STILL fighting some sort of viral infection (he has had a runny nose since August). Hopefully his counts will be up this Friday and we can get back on track.

About the only excitement that we have had is this....

The beginning of last week, Mother Nature dumped about 16 inches of snow on us.

But since Michael loves playing in the snow, he couldn't have been happier!

Fortunately, it warmed up considerably and all the snow melted before we went Trick or Treating on Friday night. Michael dressed up as a bat and had a ton of fun. (I guess that is the silver lining to not receiving chemo - he felt great for all of the Halloween festivities.) I will post a picture of Michael in his costume tomorrow. He fell in a huge mud puddle as he was getting in the car to come home so I had to wash his costume and haven't gotten a good picture of him. I usually take a picture before we leave the house but we picked him up from an after school Halloween party, grabbed a burger and went straight to Trick or Treating.

But I do have a picture of our tuckered out little boy as we were arriving home...

Until tomorrow, please keep Michael in your thoughts and prayers, JoAnne

Woo Hoo !!!

2008-10-16T19:04:00.003-04:00

We are home from Rochester and couldn't be happier about our meeting with Dr. Korones. The official report from the radiologist said Michael's tumor is "stable" but Dr. Korones thinks that the tumor shrank again. The radiologist compares each MRI to the previous one (ie. October to July, July to April, etc) and Dr. Korones is comparing each new MRI to the one done at the start of chemo (ie. October to January, July to January, etc).

When you look at January's MRI the tumor is about 26mm across and in yesterday's MRI, the tumor is about 18mm. Dr. Korones thinks that the difference in 3 months isn't significant enough for the radiologist to classify it as anything but stable but over the whole nine months, the difference is noticeable (even to lay people like Jeff and me). He is going to ask the radiologist to compare the most recent MRI to January's and see if he agrees. From what Jeff and I could see on the computer images, we don't see how he could not.

I asked Dr. Korones if the tumor shrinking was better for Michael in the long run and he said not necessarily. He said that statistically the prognosis is the same in either case (stable compared to shrinking) but that intuitively it just makes you feel better and is definitive proof that chemo is working. We'll still take the good news. Also, Dr. Korones was impressed with how well Michael is doing and thinks he looks great.

So for now we will continue with the chemo protocol and head back to Rochester on January 21st for the next MRI. Obviously everyone's positive thoughts and prayers are working so please keep it up! JoAnne

Today went smoothly...

2008-10-15T20:27:00.002-04:00

Michael had his MRI this morning. It went well except that they must have had trouble starting an IV (they do it after he is asleep) because he woke up with 3 band-aids. We will get the results of the MRI tomorrow at noon when we meet with Dr. Korones. I will update as soon as I can. Everybody keep your fingers crossed for GREAT news. JoAnne

One-fish, Two-fish...

2008-10-14T21:09:00.005-04:00

The weekend before last, we took a ride on Sunday afternoon to spend a couple of hours along the banks of the St. Lawrence River.

Michael had a ball casting his line into the water ...

... again ...

... and again .

I was impressed (and a little surprised) at the patience Michael showed at practicing casting until he landed his hook far enough out from the shore to entice the little fish.

And then he patiently waited ...

... until the time was just right ....

... and then ...

Michael caught his first fish!

He caught (and then released) a total of 4 little fish.

And each one was as exciting as the last. I am sure this won't be the last afternoon Michael and Daddy spend fishing.

As for tonight, we're settled into our hotel in Rochester. There won't be any swimming tonight though ....

... but we will have time in the morning. We have to be at the hospital at 9:30am and Michael can't eat before his MRI. So, swimming will give him something to think about other than being hungry. Please keep my little boy in your thoughts and prayers tonight, JoAnne.

No chemo this week...

2008-10-09T21:40:00.002-04:00

Michael's class is going apple picking tomorrow and we didn't want him to miss it so we made his chemo appointment on Thursday instead of Friday this week. He and I went today but chemo was a "no go". Dr. Kennedy said Michael's white blood count was good but that his platelets were too low to receive treatment. And, he also has a sinus infection. He has had a continuously running nose since before he was in the hospital last month. Dr. Kennedy thinks Michael's sinuses just finally became infected after being full for so long. Michael did get to paint a pumpkin while we were waiting for his blood work to come back, so the trip wasn't a total loss.

I have a confession to make - Michael has been complaining of his nose hurting and a stabbing pain above his right eye for the last couple of days. If you remember his nose and right temple are where this whole journey started. I have been working myself into a state thinking the pains were a problem with the tumor. So, Dr. Kennedy made my day when she said Michael had a sinus infection. (And I bet there aren't too many mothers that you will hear make that statement!)

This is week #4 so Michael now has a 2 week break from chemo. But on Tuesday night, we will be traveling to Rochester for a couple of days for Michael's next MRI and visit with Dr. Korones. I have another of confession to make - I am starting to get PMS (that's pre-MRI syndrome). We got such great news last time, I am afraid that we will be let down this time. Let's just hope that I am worrying for nothing. Please say an extra prayer for Michael next week, JoAnne.

Just a quick update ...

2008-10-04T20:11:00.006-04:00

Yesterday Michael and Daddy went to chemo alone while I stayed at work and it went well. The only hitch was that the nurses couldn't get a blood from Michael's port so they had to draw blood from his finger. (But, he was able to receive his meds through his port.) Apparently, he wasn't bashful about telling the nurses that his regular nurse, Jen, never has a problem. Michael was sick during the night but didn't protest taking his medicine because he knew we were going apple picking today and he didn't want to miss it. And with his Zofran, he was fine.

Michael is also doing much better in school. He is bringing home awesome papers that are completely done and done well. I don't know if he is doing any better socially but all he talked about all weekend was how he asked one of the little girls in his class, Kaitlyn, to marry him. I think this was in response to the fact that his favorite nurse, Jen, got married today. (Congratulations Jen & Todd. We were thinking of you today and hope you had a perfect day.) Kaitlyn must be Michael's first rebound relationship. We asked him what she said but he doesn't remember.

Jenny and Ralph are home for the weekend. As I said, we went apple picking today. We had fun even though it rained while we were there. Jeff and Michael are going fishing again tomorrow. This time they are going up on the river and I am going to go for a ride with them. There are two little shops I like to visit so I will go check them out while the guys fish.

Jenny took a bunch of pictures today that I will share with you soon. Please keep Michael in your thoughts and prayers, JoAnne.

Okay, back to happy thoughts ...

2008-10-01T20:43:00.010-04:00

We had a great family, fall weekend this past weekend that I would like to share with you. We got up Saturday morning and, even though it was raining, we started on a trip to Pixley Falls State Park, which is about an hour away. Jeff and I have visited the waterfall at this park every fall since we started dating.

Unfortunately, before we got too far on Saturday, Michael started throwing up so we came back home to give him some more Zofran. After a while we tried to venture out again. This time we decided to stop at a cider mill closer to home to make sure Michael was feeling better before we got too far.

There is a little gift shop where we bought some fresh cider, some squeaky cheese curd and some hot cider donuts.

There is also a pretty waterfall behind the cider mill that we checked out. Then we decided Michael was over his bout of nausea and continued on with our trip. Mother Nature didn't disappoint us with her beautiful foliage.

The hike down to the waterfall at Pixley Falls was beautiful.

How is this for a fashion statement? This is the outfit Michael picked out himself so that he could play in the water.

And he had fun doing just that.

We spent about an hour enjoying the surroundings.

And, since Michael is getting bigger, we explored a little further than ususal this year.

We checked out one of the smaller falls off to the side.

It was a great day. When we got back home, Michael went to his first birthday party. He was reserved at first but after a while he warmed up and had a good time with all of the other kids.

Michael has been asking to go fishing for some time (he has never been). Earlier in the week, we told him that if he did better in school and finished all of his work, he and Daddy would go fishing on Sunday.

And that is what they did.

Unfortunately, they didn't catch anything this time.

But I don't think Michael minded. Hopefully they will have better luck next time. Please keep Michael in your thoughts and prayers, JoAnne.

What an aggravating day...

2008-09-30T21:23:00.004-04:00

I have been really sore all day (but I know I will be fine in a couple of days). But, I am happy to say that Michael doesn't seem to be suffering any side effects from our accident. He had another great day at school and I think he had a good time telling anyone that would listen about his little adventure last night.

Our body shop guy looked at our car and said there is a LOT of damage. It will be up to the insurance adjuster whether they fix it or total it and he is supposed to call us tomorrow. We are really hoping they agree to fix it.

We called the other guy's insurance company (or at least who he said was his insurance company) and, after about an hour, they decided they had never heard of him or his car. So, we found out who the DMV thought was his insurance company (some company we never heard of in California) and their number was disconnected. By now we figured he probably doesn't have insurance of any kind. So our next step was to call the home phone number he gave the police to see if we can get some answers. Only problem was it wasn't his number (or address for that matter) but that of his mother who hasn't seen him for months.

After Jeff explained why we were looking for her son, she was very sympathetic and offered to help any way she could. She called her other son who tracked down his brother's insurance agent and got the policy name and number for us. We are grateful for their help - they could have just washed their hands of the whole situation but they didn't. And now the claim has been filed, we have a rental car and hopefully our car will be fixed soon. I will keep you posted, JoAnne.

If it wasn't for bad luck...

2008-09-29T20:40:00.008-04:00

We had a wonderful weekend and I was going to share all of the details with you but something happened tonight and our fun will have to wait.

Michael and I met Brian for dinner tonight and after we left him, we went to the drugstore to pick up some prescriptions. As we were leaving, we stopped at the red light by the pharmacy. When it turned green, we went straight through the intersection. There was a car across from me waiting to turn left. Unfortunately, he didn't yield the right of way to me and I T-boned the passenger side of his car when he turned in front of me.

The good news is Michael and I are both fine. I was worried about Michael's port (with the seat belt) but it appears to be fine. My neck and shoulder are sore from my seat belt, but I will be fine.

The people in the other car are fine also. At first, they were saying they were hurt but the police said they were fine and were just trying to get sympathy since:

1. The driver was driving with a restricted license from a previous DWI...
2. He was at fault for failing to yield the right of way and ...
3. They had had a "few" drinks before getting in their car and driving.

Michael was shaken up a bit and asked the policeman, "What the hell is Daddy going to say?" But then he got distracted when he found out the ambulance driver that showed up was the same one that transported him to Rochester in the middle of the night over a year ago (she remembered our little buddy).

And although all of the people are fine, the same can't be said for our car...

Our poor car!!

This is mine and Jeff's all-time favorite car and now it might be totaled. The firemen pulled the front end back out enough and checked the brakes and steering so that I could drive it home. We have to go to the police station in the morning to get a copy of the police report. Then we will call the insurance company and our body shop to find out the extent of the damage. I will keep you posted.

And, tomorrow I will tell you all about a trip to the cider mill, a waterfall and Michael's first fishing trip. And maybe you better keep us ALL in your thoughts and prayers, JoAnne.

The tools of chemo...

2008-09-26T21:24:00.014-04:00

I want to show you some of the things that have become such a natural part of our lives since starting chemo. Some you may recognize - some you may not.

This is a toothette. It is a small sponge on a lollipop stick. Remember how I said that Michael's mouth has gotten sore and it is difficult for him to brush his teeth with a tooth brush? Well, I spoke to our nurse case manager from our insurance company and she suggested I try these toothettes. So I was on a mission to find some. It didn't take long.

Michael's godfather, Uncle Jeff, has a brother, John, that owns a medical supply company locally. I asked Jeff to ask John if he knew where I could find these toothettes. He did better than that - he had a box in his warehouse and gave them to us (and refused to let us pay for them). But, before he gave them to Michael, John and one of his managers tried them out to make sure they would be comfortable for Michael.

Jeff is also a salesman for the trucking company I work for. Some of his "accounts" are medical supply companies we haul freight for so he asked one of his contacts about the toothettes and they forwarded a huge bag to Michael.

We now have enough toothettes to last Michael a long, long time. So, we took some of them to chemo today and gave them to Britney (the child life specialist) to hand out to any other children that may be experiencing pain while brushing with a tooth brush. It is my understanding that this is even more common in children receiving drugs for Leukemia. And, I told her that if she runs out to let me know - I am sure we could spare some more.

BTW - this is an example of what I spoke about some time back when I said that whenever we need something, there always seems to be some kind and generous person or people to help us out with what we need.

Now I am sure you will recognize this next item but I bet you can't figure out what it has to do with chemotherapy treatments.

Give up?

You know how Michael has a port-a-cath implanted under his skin in which he receives his chemo medicines? Well, before we leave home, we place a dab of "magic cream" over his port that numbs the skin and makes him more comfortable while they access his port with a needle. And that would make an awful mess if we didn't do something so...

... we cover the cream with Glad Press 'n Seal. This idea came from one of Michael's nurses. We had been using an adhesive patch that was really sticky and uncomfortable for Michael. So she suggested Glad Press 'n Seal. It sticks to Michael's skin but comes off easily when the time comes.

When we get into the treatment room at the hospital, Michael unbuttons his shirt and removes the Press 'n Seal. (He always wears a button up shirt on chemo days as it is easier with all of the IV tubing.)

Next, we get the access site "squeaky clean". Hey - who is that masked woman?

Now it is time for the needle. Michael is not afraid of needles at all (good thing) and always watches.

The next step is to make sure the port is working correctly. This is done by "finding red worm" (blood in the tubing). The nurses use a syringe to flush the port with saline and then to get a "blood return".

Once they are sure the needle placement is perfect, the needle gets a couple of "pillows" to make it comfortable.

Then the needle is covered with a bandage to keep it in place and blood is drawn to be tested to see if we are a go for chemo or not. Everything was great today and chemo went very smoothly.

We get Michael settled into the infusion room because as soon as he starts getting his pre-meds for nausea ...

... this is what happens!

Oh - and that masked woman is none other than Michael's best buddy, Jen.

Please keep Michael in your thoughts and prayers, JoAnne.

Come with us to Erie, Pennsylvania...

2008-09-25T20:22:00.005-04:00

As planned, we left on the morning of Friday, September 12th to make the journey from our home to Erie, Pa. It took about 5 hours and Michael slept a good portion of the way. It was raining so hard that you couldn't see very well so Jeff & I took turns driving. We went straight to the theater and arrived about a half hour before the show.

The show was at the Warner Theater which was recently refurbished and the interior was absolutely breathtaking.

They opened the doors around 3:30pm and we made our way to the manager's office as we we told to do. Jeff & I got laughing because the ushers in the theater could all work for the Secret Service as they were very zealous in keeping people away from the auditorium before the show. Jeff said he was sure one of them was getting ready to tackle me as I followed the manager to go see Darby.

And here she is:

Michael was very reserved and shy around Darby. I think he was in awe of finally meeting her.

He was a lot more comfortable with Pooh....

... and Tigger.

I think that is because they weren't "strangers" to him. He had not only met them, but spent quite a bit of time with them at Disneyland. I think if he had more time with Darby (we were only with her for about 5 minutes), Michael would have opened up but it doesn't matter because he is content and happy with the time he had with her.

After our meet and greet, we made our way to our seats and watched the show. We were in the third row, just slightly left of center stage, which was great. Michael clapped, waved, sang and danced.

After the show, we went a couple of doors down from the theater and had an awesome dinner at an authentic Italian deli before heading to our hotel. Of course, the first thing Michael did after we checked in was head down to the pool.

There was a traditional pool -

... and a kiddie pool that had an umbrella shaped sprinkler that Michael played under.

I'm sorry the pictures of our meeting with Darby aren't that great but the manager took the pictures of Michael with Darby with my camera and all of the pictures after that are blurry. He must have hit the dial and changed the settings by mistake and it didn't get fixed until I turned the camera off and on again.

Tomorrow is chemo again already. It will just be Michael and I as Daddy is working a 16 hour shift. We picked up one of Michael's all-time favorite movies tonight, "Spookley the Square Pumpkin", to take to treatment tomorrow and share with the staff. Michael has been bugging me (with a capital "B") to put up the Halloween decorations for the last couple of weeks and we already ordered his "special" costume so I think he is just a little excited about Halloween this year!

Michael had another great day at school today. Mrs. Greenwood sent home a note today that said "Michael has done a super job since Wednesday." There was also a sampling of the work he did this week and not only were they done, they were done very well. I guess he finally figured out that he might as well do his work with the other kids because if not, he will just have to do it at home. Michael went to the after school program that is right at the school today and when I picked him up, he took me to his classroom to show me some of the other things he had done this week. There was such excitement and pride in his voice I just wanted do a little dance. (But I thought the custodian may think I had lost my mind so I controlled myself.)

I will post again tomorrow night so please keep Michael in your thoughts and prayers, JoAnne.

Two in a row...

2008-09-24T21:06:00.003-04:00

Michael had another great day at school today and his mood is still upbeat and positive. He said he completed all his work today and his teacher didn't send home a note saying anything different so I am hoping that is the case.

I have to admit that getting everything off my chest with last night's post, felt really good. I told you before that this blog started out as an efficient way to keep family and friends posted on Michael's progress but has become very therapeutic for me. And as an added bonus, I keeping an accurate record for our family of both the good and the bad parts of our present journey and all of emotions that go along with it.

I know I promised to post about Darby next, but I still haven't uploaded the pictures from my camera so I am going to have to make everyone wait at least one more day. Until next time, please keep Michael in your thoughts and prayers, JoAnne.

What's been going on...

2008-09-24T00:04:00.010-04:00

I am sorry I haven't posted in a while - life has been a little overwhelming. Okay - I lied. It's been a LOT overwhelming.

Michael has had a hard time adjusting to school. I attended open house last Wednesday night and Michael's teacher said she had some concerns and wanted to meet with us to discuss some things. I wasn't very surprised. I could tell that Michael wasn't enjoying kindergarten and he had been acting out at home. One of the problems is he doesn't like going to school all day. He keeps asking why he can't go half a day like he did last year. Another thing is, they color a lot in kindergarten and, as I've mentioned before, Michael HATES coloring.

But, the most troubling problem is that our bright and outgoing little boy has become so introverted. And, as his mother, it is breaking my heart. Although none of the children treat Michael any different, Michael KNOWS he is different from all the other children. We try very hard to downplay Michael's illness and remind him of the ways he is just like any other 5 year old but he is very smart and perceptive. He knows he is the only one that misses school every Friday to get chemo. And, he knows no other children in his school have a port. He's also expressed to me anxiety that he is going to throw up in class and be embarrassed in front of all the other kids. So, although I know how to calm some of his fears, some are just beyond my capability to fix and I am having a hard time dealing with it.

Jeff and I made an appointment to meet with Michael's teacher before school last Thursday morning and we discussed a lot of things. She told us Michael is not doing his "work". Not because he isn't able to but just because he refuses. She asked us for suggestions on how to do deal with this, given Michael's circumstances, and we told her to treat him like she would any other student that refused to cooperate. Although Michael has experienced terrible things in his young life, that doesn't excuse not listening to his teacher. We also asked if Michael was interacting with the other kids and she said "no", he tends to sit off by himself. That was disheartening to hear for both Jeff and I.

Thursday afternoon, the after school program called and I had to leave work early because Michael was nauseous and complaining of a stomach ache. So, we came home and that night Michael and I had a long talk. He got out a lot of emotions and feelings and we had a good cry together. Friday morning, his attitude was much better and I sent him to school for an hour before chemo. His teacher sent home a note commenting on the improvement in his attitude.

Monday morning I put my little buddy on the bus and headed to work. About an hour later, I received a call from the school nurse saying Michael was sick, so once again I left work and went to pick him up. He spent the whole afternoon in his bed (no TV or music) doing some of the work that he had refused to do in school. And when he was finally allowed out of bed, he wasn't allowed to go outside and play. I told him if he was too sick to go to school, he was too sick to go outside and play. By dinner time, he was asking me when he could go back to school.

I am happy to report that today was an outstanding day for Michael. Jeff said he was like the old Michael when he got off the bus this afternoon. And, he got not one, but two stickers for doing his work. And for the first time, he mentioned a new friend by name and told us some things about him. I told him we will contact the new friend's parents and see if he can come over to play. Michael has also been invited to a birthday party this weekend and is looking forward to going. Let's hope we are over our little hump and things get easier from here on out.

Aside from all of the issues at school, there are a few other things that have been bothering me. One is Michael's overall condition. He has been complaining of terrible pains in his stomach and back. They seem to come and go and, of course, he wasn't experiencing them when we saw Dr. Kennedy last Friday. He has other pains, too - yesterday it was his arms that hurt and today it was his legs. When I asked him why he didn't play with the other kids on the playground at school, he said he couldn't keep up with them so I think his stamina isn't 100% either. I know all of this is to be expected, but it is so hard to know when to push him and when to let things slide.

Another concern is that Michael's mouth is getting so sensitive and his taste buds so wacky, that we are having a hard time finding things to feed him. He definitely likes "bland" foods now. So, I made him macaroni and cheese and biscuits Saturday night (you can't get any blander than that) and he said the macaroni hurt his mouth. So, he had biscuits and milk for dinner. I'm afraid we are going to run out of ideas to feed him all together.

Michael did have chemo last Friday and it went well but he was very sick all weekend. So sick, that he only put up a little fuss (instead of the usual huge fuss) to take his anti-nausea medicine. And he needed it right through Sunday instead of just Saturday. He's also had a terrible time sleeping since Friday. This happened once before for a couple of days after treatment and no one knows why.

On top of all this, I am very stressed at work. I got behind the week Michael was in the hospital and I have had a difficult time getting caught up (this is a busy time of year in our industry). My bosses are very understanding but I need to get things in order for my own peace of mind. But that just seems impossible to do when there seems to always be something going on with Michael. I know I will get over this hump too, but in the meantime, I'm overwhelmed.

On a happier note, we did travel to Pennsylvania a week ago Friday and Michael was finally able to meet Darby. I will share the details of that trip and some pictures next time. Until then, please keep Michael in your thoughts and prayers, JoAnne.

I don't like spiders and snakes...

2008-09-07T21:46:00.008-04:00

...but the occasional frog is okay. Michael found this little guy yesterday. It's a tree frog. I've never seen one like it. He is so tiny and a bright green.

He was pretty content to just sit on Michael's finger, too. Then Michael set him down on the table on our deck and was going to give him a "ride" in one of his toy tractors. Apparently his mother (the frog's mother that is) told him to never accept a rides from strangers because he took off in a flash.

I'm relieved to say that Michael's appetite has been much better the last couple of days. He played outside quite a bit this weekend and even helped us paint the dining room. This afternoon we made some sugar cookies but then he became very quiet. He and I sat for a couple of hours, cuddled up on the couch, watching movies. It's not like Michael to sit still through one whole movie. He complained of a stomach ache (which he does frequently these days) and his eyes looked very tired. So, I tucked him into bed early and he is now sleeping peacefully. Let's hope he is just a little tired from a busy weekend and that I am just becoming a little paranoid.

Please keep Michael in your thoughts and prayers, JoAnne.

No trip to Syracuse this week...

2008-09-04T20:32:00.003-04:00

Dr. Kennedy called today to check on Michael. I told her he still has a little cough but has been fever free. She said that since he seems to be doing fine, there is no reason to make the long trip to Syracuse in the morning. She didn't want him to miss any school his first week back.

We also talked about Michael's mouth sensitivity. She doesn't think that problem is from the chemo but possibly a mouth virus that doesn't cause noticeable sores. She said that is quite common in the summer. Perhaps that is what was ailing him last week. We'll just have to watch him. He actually ate even better tonight than he did last night.

Michael had another great day at school. He told me his favorite part of the day is gym because they "get to run around and have fun."

Next Friday is our trip to Erie, PA to meet Darby from My Friends Tigger and Pooh. Our local Make-A-Wish chapter made arrangements for Michael to meet Darby about a half hour before the show. They also reserved a hotel room for us, paid for the tickets for the show and set us gas cards for our trip. After all they have already done for us, this is wonderful. I can't wait to share all of the details with you.

Please keep Michael in your thoughts and prayers, JoAnne.

Michael is officially a kindergartner...

2008-09-03T20:57:00.016-04:00

Yesterday we went to Michael's school for orientation and he wasn't too thrilled. Even though there were a bunch of his friends from last year in his class, he was uncomfortable. So, when he woke up this morning, he said that he didn't feel good and didn't want to go to the first day of school.

Once he got up and started getting ready, his excitement started increasing. By the time the bus came at 8:50am, he was ready to go. While we waited for the bus, Michael picked some flowers for his bus driver, Debbie. When he got on the bus, he expected to have to sit in the first row since that is where he had to sit when he went to Pre-K last year.

Debbie told him he was a "big kid" now and could sit anywhere he wanted. He went back a couple of rows and took the first empty seat. Then when his friend from across the street, Jarrod, got on the bus, the 2 buddies rode to school together.

When he got home this afternoon, around 4:05pm, Daddy was home waiting for him and Michael called me at work to tell me about his day. When I asked him how his day went, he told me "better than I expected". He said he had a LOT of fun and that he can't wait until tomorrow to go back. He is a character!

Michael has still had a cough since we came home from the hospital but hasn't had any fever (whew!) He's been a little cranky and hasn't been eating and drinking as much as I would like. But, he did do better tonight. The Vincristine has made Michael's mouth sore and sensitive and difficult to eat or drink. I am going to talk to Dr. Kennedy about anything we can do to make him more comfortable this week.

We have to go to Syracuse Friday to have his counts checked and a check up but no chemo. (This is week 1 of his 2 week break.) His appointment is in the morning, so hopefully he can be to school by early afternoon. Friday is art day and they could do some painting...speaking of which....

I forgot to tell you that while Michael was in the hospital last week, there was a professional artist that visits the children's wards once a month and she helps the pediatric patients paint. She happened to be there Wednesday night and the nurses took Michael and his roommate downstairs to join in the fun. Here is one of Michael's masterpieces:

Isn't is awesome? He started with the green and yellow item near the bottom - it is a tractor with a caution light on top. Then he added the black road and the beautiful tree. The blue dots are the rain coming out of the black cloud (and that is why the tractor had to have a light on it). He was telling us this story the whole time he was creating.

The artist was pretty taken with him. She said Michael has quite a vivid imagination. And she was impressed with his painting ability. When I told her that he loves to paint - but hates to color, she wasn't surprised. She said coloring with crayons isn't "tactile" enough for him. Paints allow him to be creative at a quicker pace that allows his artwork to keep up with his imagination. Once she said it, it made sense to me and I was glad to have that little bit of insight into my special little boy.

He also made another painting, which he did with his fingers instead of a brush, and he painted a little ceramic dog, both of which he did for Jen (his special nurse from 5C). Jen came to visit Michael every morning when she got to work and again every afternoon before she went home. She also brought Michael a stuffed alligator that is green and yellow (his 2 favorite colors) that Michael has added to his bedtime menagerie.

I will post Friday night and let everyone know how Michael's doctors appointment goes. Please keep Michael in your thoughts and prayers, JoAnne.

P.S. I have one more picture that I have to share with everyone- it is Jenny pinning Michael's boutonniere on him before he walked her down the aisle at her wedding. Everytime I see it, it brings tears to my eyes.

There's no place like home...

2008-08-29T20:27:00.002-04:00

They released Michael this afternoon and we are happily home. We found out the reason they didn't let us come home is because when they took his vitals during the night Wednesday, Michael had a fever for a while. I'm happy to say that they changed their mind about the home infusion, also. So, we're home and life can get back to normal.

Michael hadn't really recovered from the stomach bug he had the weekend of the wedding. Getting lots of fluids through an IV was good for Michael. He is back to his old self.

Please keep Michael in your thoughts and prayers, JoAnne.

We're still in the hospital...

2008-08-28T18:36:00.002-04:00

This morning we thought we were going home but, unfortunately, it's almost bedtime and we are still here. Michael's counts were 500 yesterday (up from 400 the day before). And, he hadn't had a fever in over 24 hours so this morning they said we could go home if his counts were still good. We got psyched and waited for his bloodwork to come back but we got bad news. Michael's counts have dropped to 320 so we are here until at least tomorrow morning.

The other news is when we go home, Michael will still have an IV infusion for another 10 days. There will be a company that will come to the house to show us what to do. The doctor says Michael can still go to school next week so keep your fingers crossed.

I will update again tomorrow. Please keep Michael in your thoughts and prayers, JoAnne.

We just talked to Dr. Kennedy...

2008-08-27T09:59:00.003-04:00

We just talked to Dr. Kennedy and she said Michael is doing better but that they are going to keep him until tomorrow. His counts have started to come up and his fever is gone but she wants to give the blood cultures 24 hours to make sure there aren't any nasty bugs in Michael's blood. So, now we wait.

I am happy to report that Michael is acting like he feels better. His overall color has improved and his eyes aren't black anymore. He ate a little cereal and some peaches for breakfast. It's not much but that is more than he has eaten the last couple of days. He woke up cranky but then he heard Britney (the child life specialist from unit 5C) was on the floor and that brought a smile to his face. Britney said she would tell Jen (the nurse Michael has a little crush on) that Michael was here (on the seventh floor) and that she was sure if Jen got a chance that she would come up to see Michael. That made his smile even brighter. He insisted on getting dressed and now we are down in the day room where he is playing games and coloring with Daddy while I type this.

Jenny and Ralph are on the last day of their honeymoon in Peurto Rico. I was hoping Jenny wouldn't check the blog until she got home but she did and saw that Michael was in the hospital, so she called. Unfortunately, she called while Michael was still cranky and not in the mood to talk to her but I was glad to hear from her.

I will post again when I get a chance. Please keep Michael in your thoughts and prayers, JoAnne.

Update - Just as I was getting ready to post this, Jen came to see Michael for a minute and I think that is the best medicine he's had!

This post is coming to you remotely...

2008-08-26T20:46:00.002-04:00

We've had a bad 24 hours - I am posting this from Michael's hospital room in Syracuse tonight. His fever spiked to 103 degrees about 2:30am this morning. About the same time, he started coughing and "couldn't breathe". So, as my panic level was rising and I was considering calling 911, he settled down and the coughing subsided. We gave him some Tylenol and after a while his temperature came back down to 99 degrees. He slept very fitfully for the rest of the night (and Mom and Dad didn't sleep at all.)

First thing this morning we called Dr. Swan's office (Michael's pediatrician) and took him to see her around 10:30am. She didn't like the way he looked so she ordered some tests. He had black circles under his eyes, his color was terrible and as she said, "Michael's spark just wasn't there". So we took him to the hospital to have some blood work done and a chest x-ray. The chest x-ray ruled out pneumonia but the blood work showed he was fighting an unknown virus and he had become severely neutropenic. He is also dehydrated.

Dr. Swan called Dr. Kennedy and they decided that Michael needed to be admitted so that he could receive an antibiotic and some fluids through his port. Both doctors agreed Syracuse would be better for him than Watertown. When they admitted him, the nurses took some blood to do some blood cultures to see if they can identify the virus he is fighting. So, we are here until either: 1) Michael's fever goes away, 2) his ANC stops dropping and climbs back over 500 (currently in the 400's), or 3) they identify the virus and come up with a sure fire plan to treat him at home.

I will post when I can to keep everyone updated. In the meantime, please say an extra prayer for Michael tonight, JoAnne.

Come with us to Legoland...

2008-08-24T17:55:00.014-04:00

Michael has is still fighting whatever mysterious virus he has had for the last couple of days. His fever has been spiking and receding all weekend. Let's hope he gets over this very soon. While we wait for our little boy to mend, we'll continue our California adventure with a visit to Legoland.

You are fortunate that by the time you scroll down this page a little ways, you will be transported to Legoland. For us, a 45 minute drive took five and a half hours. It seems there was a three car accident that caused a four acre brush fire that turned I-5 into a parking lot for most of the day. We discussed turning around and trying Legoland on Friday, but we couldn't even get to an exit to turn around. So, we kept going and finally arrived around 2pm and we were all cranky and hungry. So, we headed to the nearest food vendor inside the park and grabbed some lunch. Then we began our day of fun.

The first area we came to was Explore Village. The rides in this area were pretty tame and geared for the younger crowd. You would think that this would be the part of the park that would be perfect for Michael but you would be wrong (as you will see).

So we moved along to Fun Town. In this part of the park, they had a Fire Academy that was a big hit with our crew.

There were 4 fire trucks in a row, each manned by a different, 4 person team. Our team was Daddy, Jenny, Brian and Michael. They raced the other teams to the "fire" by manually pumping their trucks. Then each team jumped off their trucks and manned their fire hoses. Again, they manually pumped the water and tried to hit the fire targets in the building in front of them. (You can see Jeff and Brian above doing the pumping while Jenny and Michael aimed the fire hoses.) The first team to put our their pretend fire, won. And although our gang gave it all and had fun, unfortunately they didn't win.

So, we went on a little spin...

...in a helicopter...

...in an airplane...

...and in a little boat.

I think that smile says it all!

After we finished visiting all of the attractions in Fun Town, we moved on to Pirates Shores. This part of the park was a blast...

...and WET!!

There was an attraction that was full of water - you could run under it, through it and ...

...you could even spray it at the people watching dryly from the sidelines.

Even the rides were designed around water...

...and the spectators here got wet, too.

Michael stopped to play a carnival game and won a pirate duck (who is now added to the menagerie that sleeps with him every night.)

On our way to Castle Hill, the kids took a ride on a swinging pirate ship.

This is when we started to realize Michael liked the more adventurous rides.

In this part of the park, there were a couple of roller coasters...

...a dragon or two (this one is made entirely out of Legos)...

...and some wild rides. This ride was like nothing I had ever seen before. It took the riders and flipped them back and forth, to and fro, upside-down and right side-up - and Michael loved it! Before you got on the ride, you picked the intensity level you wanted (between 1 and 5). Michael and Brian did level 1 so they weren't tossed around as much as some of the other riders.

Next, Michael mounted up and...

...and participated in a little jousting (again, this knight is made entirely of Legos) .

And, Sir Michael had a ball.

Then, we made our way around to the Land of Adventure. As I am sure you can tell by now, there were a lot of awesome Lego creations throughout the park.

There were lots of fun rides in this section, too. But none of them thrilled Michael as much as...

...ROLLER COASTERS!

Well, I have a little bit more of Legoland to share with you, but it is storming pretty good here and our internet connection keeps fading in and out. So I think I will end for now and pick up here next time when we will finish Legoland and then head for the beach.

Please keep Michael in your thoughts and prayers, JoAnne

Michael is doing better today...

2008-08-22T18:15:00.002-04:00

Michael had a very restless night. As long as we kept giving him Tylenol every 4 hours, his fever stayed the same (at least it didn't go up) and he was a little more comfortable. Then, he woke up very early this morning and complained he was hungry. But, he lost his appetite in the short time it took me to fix him a bowl of cereal. So, I gave him some more Tylenol to get his temperature back down and then we got ready to head to chemo.

Michael fell asleep as soon as we got in the car and quietly slept all the way to Syracuse. By the time we got to the hospital, his fever had broken and he was feeling much better. We stopped in the cafeteria and picked up a snack before heading up to the fifth floor. Dr. Kennedy checked Michael over good and then check his blood counts. She didn't find anything seriously wrong and thought by the looks of his white cells, that Michael was just fighting a little viral infection.

So, he received his chemo (which he slept through as usual) and then we headed home. It is only 6:30pm and he has already asked to go to bed, so I would say he is still a little under the weather but on the mend. Hopefully, he will get a good night's sleep and be back to 100% by morning.

Please keep Michael in your thoughts and prayers, JoAnne

Michael is down with a bug...

2008-08-21T19:15:00.001-04:00

Michael came home early from daycare today not feeling well and with a low-grade fever. His babysitter, Patti, said he alternated between complaining his head hurt and his stomach hurt. He's pretty cranky and has no appetite. Let's hope this is a run of the mill illness and not a sign that his counts are out of whack.

I spoke with Michael's favorite nurse, Jen, and she said Dr. Kennedy wants us to give him Tylenol every 4 hours and they will see us tomorrow. She also said if his fever continues to rise on the Tylenol to take him to the Emergency Room tonight. Keep your fingers crossed that that doesn't happen.

If you remember back in May, Michael was given the opportunity to spend the day playing on "big boy toys". Last night I was playing around with the pictures that Jenny and Brian took that day and created a keepsake book. If you would like to take a peek, you can check it out here. I'm pretty happy with the way it turned out and I know that Michael will enjoy it for many years to come.

Please keep Michael in your thoughts and prayers, JoAnne

It's been a year...

2008-08-21T07:02:00.007-04:00

August 21, 2007

It's hard to believe but - It was a year ago today that we handed our little boy over to the surgical team so that they could cut open his precious little head and try to remove the mass recently discovered growing in his brain. Leaving him in that operating room and walking alone back to the waiting room, knowing that he would be forever changed and scarred, was the hardest thing I have ever had to do. And life has been a roller coaster ride since.

If you have been with us since the beginning, you may remember that we were initially told that they were able to remove the whole tumor. And later we discovered that there was a miscommunication between Michael's doctors and that there was a small portion left behind. Then we were given the diagnosis of Ganglioglioma (which is typically a relatively non-aggressive type of tumor) only to be told later that it was actually an Astrocytoma (which can sometimes turn aggressive). The good news here is that at least it is still classified as a Grade II and therefore considered benign.

August 2007

You may also recall that initially we were told that Michael would not need anymore treatments, except for possibly another surgery "someday" to remove the remaining tumor. Three months later, we learned that the tumor was growing and Michael would have to begin intensive chemotherapy. And the decisions (even the little ones) that we have had to make since last summer have changed us forever.

We had to decide whether to go with a chemo treatment that has a slightly better success rate but can cause secondary cancers or to go with the good but slightly less successful treatment with fewer side effects (we chose the latter). We also had to decide whether to surgically "implant " a foreign object in Michael's carotid artery to receive those treatments or to choose a less invasive port that was easier to damage (we chose the former). I can say with confidence, that we have made the right choices for Michael so far.

September 2007

The last low point in our long journey was last spring when we learned that there was actually a larger portion of the tumor remaining than we thought. But, I am happy to say that at this time, we are in a high point emotionally after learning last month that the chemo seems to be working and the tumor appears to be shrinking.

I was recently reading some of my older posts and it feels like they were written by somebody else entirely, a woman that is a stranger to me now. The new terminology that I was using so uncomfortably is now a second language to me. Things that were foreign to me a year ago, now seem like they have always been a part of my life. Last week at chemo, the nurses couldn't respond right away to the alarm on Michael's IV pump that signals a medication is done and told me I could turn it off -and I actually could.

October 2007

We have had a lot of amazing people enter our lives - doctors, nurses, volunteers from CompassionNet and Make-A-Wish and many, many strangers that just wanted to bring a smile to our little boy's face. We have been fortunate enough to see the generous, caring, unselfish side of people - family, friends and strangers alike. It seems whenever we have needed something - whether it was emotionally, physically or financially - there has been someone right there, ready and eager to help. And we thank each and every one of you from the bottom of our hearts.

As we go forward down this path that fate has led us to, I have been asking myself "If I could look into a crystal ball and see what the future holds for us, would I want to know?" The answer may surprise you - but no, I wouldn't. If I knew that the future would hold only good things for us, I would look in a second. But, with the chance (however slim) that there may be heartache or disappointment at some point in the future, I think I will just take each day as they come and enjoy them to the absolute fullest. And so, that is where we are at this point of our lives. Living each day as they come and not worrying about tomorrow until tomorrow.

November 2007

I hope you will continue along with us and - as always - please keep Michael in your thoughts and prayers, JoAnne.

This week has been better than the last...

2008-08-17T13:51:00.003-04:00

Chemo went well on Friday. Michael's counts were good, he received his pre-meds and promptly fell asleep and then the chemo was administered with no problems. I talked to Dr. Kennedy about the pain in Michael's legs last week and she checked his gait to make sure he wasn't having any problems with balance. Thankfully he did fine with the tests. He has also felt good since Friday. There hasn't been any nausea and his appetite has been good. It looks like it is the first treatment after his two week break that are the worst for him.

Please keep Michael in your thoughts and prayers, JoAnne.

Now back to southern California...

2008-08-14T20:48:00.017-04:00

Michael has been feeling better the last couple of days. He has been eating well, sleeping soundly and playing without any apparent pain. Let's hope that tomorrow's treatment doesn't awaken the nasty side effects again.

In the meantime, let's continue our Make-A-Wish trip with our Wednesday visits to Disneyland and Disney's California Adventure.

Again, we slept until Michael woke up naturally and then headed downstairs to have a light breakfast. Then we started the morning on the monorail on our way back to Disneyland for another day of sightseeing and fun.

Once inside the gates, we took the Disneyland Railroad back to where we had ended our day the night before...

New Orleans Square.

Our first stop was another ride on Pirates of the Caribbean (a favorite for all of us). Then after a stroll to check out the sights and sounds of this part of the park, we hopped aboard a raft for our journey to ...

The Pirate's Lair on Tom Sawyer Island.

Michael had a ball on the island - visiting with pirates and listening to music...

climbing in tree houses, scrambling across rope bridges and exploring in caves...

and just hanging out with his brother (and sister of course).

We decided not to go on Mark Twain's Riverboat...

Or the Sailing Ship Columbia. There was no shade on these rides and Michael seemed to feel a lot better if we kept him out of the direct sun as much as possible.

So, we took the train over to Fantasyland to spend a little time. We checked out some of Disneyland's original rides like the Mad Hatter Tea Party, Mr. Toad's Wild Ride, Peter Pan's Flight, Pinocchio's Daring Journey, Snow White's Scary Adventure (It's a Small World was closed for renovations) and...

King Arthur Carousel. After a while...

Michael took a little nap while the adults checked out some attractions that our little buddy wasn't interested in.

Then we grabbed a quick bite to eat. That's one of the best hot dogs in the world that Michael is eating.

He was feeling much better by this day so we were able to do and see a lot more than we had the previous two days. We rode the Disneyland Railroad to make our way around the park - there was a dinosaur display that Michael enjoyed seeing (again and again).

And after a trip on the Jungle Cruise, we said farewell to Disneyland.

BTW - you may have noticed the button Jenny is wearing in the picture above - we all wore those during our time at Disney's parks. They had a picture of Genie from Aladdin (Disney's Make-A-Wish ambassador) on them and identified us to park staff as a Make-A-Wish family.

And the blue lanyard around Brian's neck has souvenir pins on it. When we checked into our hotel, they gave Michael six plain pins that he could trade for better pins with any Disney cast member wearing a lanyard. He had fun trading the pins and then we purchased additional pins for all of our favorite rides. Now Michael has a nice keepsake that will always remind him (and us) of the fun we had.

After a short swim back at our hotel, we walked over to Disney's California Adventure one last time.

The first ride we came across was the the Grizzly River Run. This ride was awesome!! It is a white water raft ride that rises and drops, swirls and splashes. We were all soaking wet when we got off the ride but it was worth it. I think this was everyone's favorite ride of the entire week.

We checked out the parts of the park that we missed the day before. Like the Hollywood Pictures Backlot where we enjoyed the Monsters Inc. ride. Another section we hadn't explored was...

"a bug's land". This part of the park was so much fun. Everything was designed to look like you were a tiny bug surrounded by everyday human items. Like...

this bench that Jeff was resting on. It looked like it was made out of old, stained Popsicle sticks.

And the lights were provided by fireflies. There was a canopy of giant four leaf clovers that shaded you from the hot sun. And the "tent" over one of the rides looked like a giant umbrella (giant to a bug's viewpoint anyway). Even one of the rides was made of leaves and old, discarded food cartons. The creative genius in this section was amazing.

It was getting late and starting to get dark but the kids had a ball...

spinning and twirling in a friendly ladybug...

driving and...

and bumping in little caterpillars (to just name a few of the attractions).

We were still in "a bug's land" about ten minutes before the park closed and we all wanted to end our night with the Grizzly River Run one last time. So we made a mad dash from one side of the park to the other and were one of the last rafts to go out on an adventure that night. And we had even more fun than the first time!

After we got back to the hotel, we put Michael to bed and Jenny and Brian stayed with him while Jeff and I spent a little time back at Disneyland (which is open later than Disney's California Adventure). We just walked around, watched the fireworks and enjoyed the Fantasmic laser show. It was a relaxing end to an enjoyable day.

There are just two days of adventure left of our trip. Next time we will check out Legoland.

Keep your fingers crossed that Michael does well with chemo tomorrow. And, please keep him in your thoughts and prayers, JoAnne.

The last couple of days...

2008-08-12T20:10:00.012-04:00

As you know, we have been preparing for and celebrating the wedding of Michael's big sister and new brother-in-law that took place this past Saturday.

The blushing bride and her smiling groom - Jenny and Ralph.

Michael wore a tuxedo like those worn by the groomsmen. When he tried it on at the rental store, he looked in the mirror and said "I'm handsome. Aren't I, Mama?"

"Yes, you are little buddy."

Then Michael and his big brother walked their beautiful sister down the aisle. It was a perfect day in a romantic setting surrounded by those that mean the most to us.

Michael was great during the wedding and reception but unfortunately, that is the only time since last Friday that he felt well. As is usual with the first week back to chemo after a break, Michael was terribly sick. When he woke up after his treatment, he was "out of it" a little more than usual. And he didn't have much of an appetite all evening - eating only a couple of bites of pizza and an ice cream cone. Then he woke up around 2am and started throwing up and it didn't let up until after 8am, when he was finally able to keep down some Zofran.

He felt good for the entire day but still didn't eat much. And he drank even less. Since he didn't get much sleep Friday night, he asked to go to bed pretty early on Saturday and he slept peacefully all night. Then on Sunday morning the vomiting started again. And he had severe pains in his stomach that made him curl up into a ball and cry out in pain.

All of the way home he alternated between getting sick and taking little catnaps. And it didn't get any better after we got home. Sunday night, he slept very restlessly and he still couldn't keep anything down on Monday. His eyes had black circles under them. His little lips were all cracked and his skin had a gray pallor to it. I was really starting to worry since he hadn't kept anything down for 3 days - even clear liquids.

Finally on Monday afternoon, the stomach pains subsided. He was able to eat a light lunch and, more importantly, was drinking some liquids. By today his appetite was back to normal and he went back to daycare. But tonight, he became very frustrated playing with his toys and began throwing a full blown temper tantrum. When he calmed down, I asked him to talk to me and tell me what was wrong. He started crying and said he couldn't peddle his bike because his legs hurt "real bad". And then he said that sometimes his wrists hurt, too. I think this is a new side effect of the Vincristine and we can only hope it will subside quickly.

It's funny - when we were at the wedding, I was watching Michael and thought that if you didn't know everything that was going on, you would think he was a typical, active, healthy five year old. But then in the blink of an eye, I am reminded that there is nothing typical about our life these days. I think this is the sickest he has been since he started the maintenance phase of chemo. I wonder if that has anything to do with Michael receiving a full dose of Carbo last Friday after receiving a reduced dosage last time around.

Please keep Michael in your thoughts and prayers, JoAnne

(Next time - more of our Make-A-Wish trip.)

On to Disney's California Adventure...

2008-08-04T20:04:00.016-04:00

Sorry about the delay in posting but we have been in wedding mode around here (Jenny's wedding is this Saturday). But I have finally downloaded all our vacation pictures and am ready to continue our tour.

Since Michael wasn't feeling well on Monday, we let him sleep as late as he wanted on Tuesday. We got up around 9 am, grabbed a quick breakfast at the hotel and headed to Disney's California Adventure. Disney guests could enter this park through a private entrance in the Disney hotel across the street from ours so we were there in no time.

We had an appointment at 11 am so we only had time to check out one ride before meeting a special friend (more on that in a moment). We had seen Soarin' Over California showcased on one of the shows about Disney on the Travel Channel, so we decided to check it out first. We weren't disappointed.

There were several rows of seats in front of a panoramic screen. When the ride starts, each row of seats was lifted up and forward so that they were one on top of each other and you had an unobstructed view of the screen. Then the video started. You actually felt like you were flying over California on a hang glider. There was even "smells' to go along with the video (for instance you could smell oranges when you soared over the orange groves). They also moved the seats and a gentle breeze blew when appropriate. It was awesome.

Next, we found our way to guest services to wait for a very special person:

Handy Manny!!

He and Michael had fun playing tag and tickling each other for about half an hour. Did you notice the matching outfits (except Michael left his toolbelt at home)? Manny did! What a coincidence.

Michael was a Handy Manny fan even before he was a Darby fan so he really enjoyed this time.

Then Manny escorted Michael to a very special show. (BTW - what you don't see in this picture is all the kids running after Manny, trying to get his attention and he only had time for Michael. You can just imagine how special our little boy felt!)

This is Darby, Pooh and Tigger in Disney Playhouse Live, the show Manny escorted us to. We even had front row seats. The show features the characters from Mickey Mouse Clubhouse, Handy Manny, Little Einsteins and My Friends Tigger and Pooh, all of Michael's favorites. Unfortunately they were puppets and this is as close as we got to Darby all week. (But I have good news on that front that I will share at the end of this post.)

When the show was over, we headed to the part of the park called Paradise Pier. It is set up like an old fashioned boardwalk and was where we had some of the best times of the week.

You can see this part of the park from our hotel (in fact that is the building in the background above) so Michael was anxious to visit since we checked in Sunday night.

And the first ride he wanted to go on was the Ferris wheel - so that is where we headed first. Now, I want you to notice that this Ferris wheel is not your traditional Ferris wheel. Not only does it go around but the cars also slide in and out as you go around.

Michael thought this ride was awesome and wanted to do it again. The only problem is Jeff, Jenny and Brian were all sure they were going to die and wouldn't go on it again. (As for me - I wisely kept my feet on the ground.)

Then we checked out some of the other attractions in the area like Toy Story Midway Mania...

and King Triton's Carousel...

and the S.S. Rustworthy...

where Michael had fun playing in the water.

Next, there were some fun on the Jumpin' Jellyfish...

a quick bite to eat...

and some time on the Redwood Creek Challenge Trail.

And since Michael still wasn't feeling 100%, we spent the hottest part of the afternoon...

playing with some new toys in our air conditioned rooms (this is a replica of Disney's monorail)...

and swimming in the pool.

And then when the temperatures cooled, we took the monorail back to Disneyland to spend the remainder of the evening. On our way back to the hotel late that night, we purchased tickets to visit both parks again on Wednesday, which is where we will go next. (And since these posts take 2.5 - 3 hours each to create, edit and post, and we have a very important wedding in just 5 days, I won't make any promises this time on how soon I will get the next post up. But, I'll try not to make you wait too long.)

Now for our good news - when we got back home I started searching for a way Michael could meet Darby. We had seen a Playhouse Disney Live show last fall in Binghamton that had "live" performers playing the parts. I emailed them and explained the mix up in California and asked if there was anyway Michael could meet and spend time with Darby. They responded that they will do what they could and to have Make-A-Wish contact them with a formal request, which our local chapter was more than happy to do for us. So, I purchased tickets for the September 12th show in Erie, PA and hopefully Michael's dreams will finally come true! I will keep you posted.

Please keep Michael in your thoughts and prayers, JoAnne

P.S. I want to thank Jenny for the new banner at the top of the page - I love it!

We interrupt this blog for real life...

2008-07-31T21:50:00.004-04:00

I know I promised to take everyone to Disney's California Adventure tonight but I worked late and then had some errands to run so we will have to wait until tomorrow to continue our journey. I will get a good night's sleep and see you all back here tomorrow.

Please keep Michael in your thoughts and prayers, JoAnne

Michael's friends Tigger and Pooh (and Eyeore, too)...

2008-07-30T19:01:00.018-04:00

We got up bright and early Monday morning (July 21st) in anticipation of our big day at Disneyland. We went down to the lobby of our hotel, where there was a snack bar, and had cereal and pastries for a quick breakfast.

As is common on Monday after treatment, Michael didn't feel the best. He woke up during the night shaking his hand and complaining of the "sand" feeling that he gets from the Vincristine. He also had pains in his stomach and didn't have much of an appetite. But we started our day as planned, hoping to distract him from his discomfort.

One of the advantages of staying in a Disney hotel is that it is just a short walk to get to the parks. One thing we enjoyed the most about southern California was the absolutely perfect weather. The temperature was cool in the morning and then gradually warmed up to the mid-70's. And there was no humidity like we have here in northern New York.

To get to Disneyland, we walked a couple of blocks to Downtown Disney and caught the monorail straight to the park.

I am sure everyone recognizes these pictures - Disney Main Street and Cinderella's Castle. (BTW - Michael believes Disneyland is the happiest place on earth because they have the best hot dogs in the world.)

The monorail dropped us off in Tomorrowland right next to the new Finding Nemo ride so we hopped right on. Disney had given us a special card that allowed us to enter the rides through the exit so we didn't have to wait in line. And some of the lines were more than an hour long! Finding Nemo is a submarine ride and Michael didn't care for it because there was a shark that scared him.

So next we tried the Autopia ride. This is where you drive little cars around a track. Jeff and Jenny were in the first car with Brian, Michael and I following. Brian operated the gas pedal, Michael steered and I hung on for dear life! Michael loved this ride - in fact, we did it again in the afternoon. At the end of the ride, there was a photo booth where you could have your picture taken and create a driver's license. Now Michael has a license that he can show the security guard at the hospital when we check in for chemo.

We also did the Buzz Lightyear Astro Blasters ride, which was a riot. You rode in cars and shot lasers at targets that were around each corner. Brian had the high score for this game out of our little group. After we left the ride, Michael had to have his own laser so that he could adequately protect the princess (which was me) from the bad guys (and of course he got it.)

Michael was very grouchy and not really interested in the rides (doesn't he look grouchy). We had an appointment at 11:45am to meet with the Pooh characters at the Wish Lounge so that is where we headed.

The wish lounge is just off Main Street and was a very nice place to relax and hang out. They had a bed with lots of big, comfy pillows and a couple of chairs. There was also a big screen TV where you could watch movies (Disney, of course) and a chest full of games and coloring supplies. It was nice and cool in the lounge and they had cold drinks and crackers for visiting Wish Kids and their families. So, we hung out for about 45 minutes waiting for our friends to arrive.

Right on time, Pooh, Tigger, Eyeore and their handler arrived to meet our family. There was some disappointment that Darby wasn't with them as expected but Michael never said a word. He was very shy at first but eventually warmed up to the characters.

The woman that worked in the lounge suggested a friendly game of Candyland for the new friends.

They all had fun together. Michael had a substantial lead when he got sent back almost to the beginning. Tigger was nice enough to switch places with Michael so that he could win the game. After about a half hour, it was time for Pooh, Tigger and Eyerore to get back to work making children smile in the park.

There were hugs....

kisses...

and smiles all the way around!

On a side note - Genie is the Disney ambassador for Make-A-Wish and the mural behind Pooh in the above picture was made up of thousands of tiny pictures of Wish Kids at Disneyland. It was incredible and instantly brought a tear to your eye and a lump to your throat.

After we left the Wish Lounge, we headed for Mickey's Toontown where Mickey, Minnie, Donald, Goofy and their friends lived and hung out (although Michael wouldn't have anything to do with the characters he met throughout the park).

We stopped by Minnie's house but she wasn't home. And Michael didn't think we should go in without her permission but we assured him she wouldn't mind.

We stopped by Mickey's house, too but there was a LONG line to actually get to see him.

I think this ride was called Gadget's Go Coaster and was actually the second roller coaster we went on that day (but as you will see over the next couple of posts, it is far from the last). Michael liked this one but didn't like the first roller coaster we rode, Big Thunder Railroad, because there was an abominable snow monster that startled him.

This was the Fire Station in Mickey's Toontown and by this point it was starting to warm up and my family was already tired of posing for pictures. So, we grabbed a light lunch and headed to Critter Country where Pooh and friends live. Michael was sure we would find Darby there but, of course, we didn't.

So we checked out a few of the rides and attractions and then headed back to our hotel to go for a swim and to wait for the day to get a little cooler. When we got off the monorail in the evening, we headed for New Orleans Square and had a sandwich for dinner. Then we walked around and rode some of the attractions while we waited for the nightly fireworks show. We went on the Pirates of the Caribbean ride and were all in awe. The animated figures and special effects were amazing (in fact we went on this ride a second time on Wednesday). Then Michael fell asleep so Jenny stayed with him while Jeff, Brian and I went through the Haunted Mansion, which we loved too.

We took the Disneyland Railroad back to Main Street and the front gates to get back to our hotel and were able to see some of the fireworks while we walked. (The monorail didn't run during the fireworks.) We'll get a good night's sleep and tomorrow will take you to Disney's California Adventure.

Please keep Michael in your thoughts and prayers, JoAnne

Wish you were there...

2008-07-29T20:30:00.017-04:00

We made it home tired but safe and sound around midnight Saturday night. We are now all rested and recuperated and I'm ready to share the details of our wonderful vacation with you.

On Sunday morning (July 20th) the limo showed up about 8:20am to take us away on our adventure. My Dad was there to see us off. It was a dreary, rainy day but nothing could dampen our spirits.

It's time to head to the airport.

This is the goofy smile my 2 boys always give me when I take their picture (which is a shame since they both have beautiful smiles).

The lights in the roof of the limo looked like stars - Michael thinks we need these in our car.

He liked the fish lamp too. There was a wet bar with cold sodas and juice boxes set up for us.

A tender moment between a little brother and his big sister.

The ride to Syracuse was a lot of fun. We got to the airport in no time and sailed through checking in and security. Before we knew it - it was time to board our plane.

The flight attendant came into the terminal looking for a "special passenger" that she had heard was flying that day. She took Michael down to meet the pilots and check out the cockpit. They even let him push one of the buttons that sets off the announcement tones.

The flight was smooth and uneventful. It was about an hour flight to Cincinnati where we had a 45 minute layover - which was just enough time to catch our connecting flight. It's a good thing I had packed some sandwiches and a bunch of snacks or we would have been starving by the time we got to the west coast. The last leg of our trip was around 4 hours and Michael looked out the window and chattered the whole way.

When we got to LAX, we picked up a mini-van that Make-A-Wish had rented for us and headed for our hotel on Disneyland Drive. Jenny brought her GPS, named Jill, which was great to have. (By the way, Michael knows how to spell GPS - it is "G" "P" "S".) Jill can get an attitude if you don't do exactly what she says so sometimes we had fun tormenting her (hey - it kept us entertained in the car).

Our hotel - Disney's Paradise Pier. It is one of 3 hotels in the Disney complex.

Goofy was in the lobby to greet us. (BTW - Goofy's shirt may look like a peppermint candy but it doesn't taste like one - don't ask me how we know this.)

By the time we checked in, it was around 5pm but our bodies thought it was 8pm due to the 3 hour time change. We were all pretty hungry so after we took our stuff to our room, we headed to the PCH Grill (the restaurant right in our hotel) and had a nice dinner. Michael ordered a Make Your Own Pizza.

They brought all the fixings out on a Mickey Mouse shaped tray (and of course there was a chef's hat)...

Michael spread the sauce on the crust...

added a little cheese....

and some pepperoni...

Then the waiter took it to be cooked in a wood fired oven and presto - the best pizza ever according to Michael (and I have no doubt it actually was).

We wound out the evening by checking out the rooftop pool.

As usual - Michael couldn't wait to go swimming.

On the other hand - Jenny and Brian preferred the hot tub.

There was an awesome water slide next to the pool that Michael loved (and I have to admit, I did too).

The first time Michael went up the slide, Jenny went with him and was going to ride down with him. The lifeguard said everyone had to go alone so Michael hopped right in and down he went! Then he jumped out when he got to the bottom and headed straight for the stairs again (and again and again). I am sad to say that I meant to take the camera down to the pool and get some pictures of Michael on the water slide but I never did.

After the kids went back to the room and settled in for the night, Jeff & I took a walk to Downtown Disney to spend some quiet time alone for our anniversary. This is a neat area with a variety of shops, restaurants and live music. Then we turned in to get a good night's rest in anticipation of our big day at Disneyland... and that is where I will take you tomorrow.

Please keep Michael in your thoughts and prayers, JoAnne

P.S. I am sure that by now everyone has heard that there was a 5.4 earthquake in southern California today. I read that they had to evacuate Disneyland. My first thought was that if the quake had happened one week earlier, we would have been at Disneyland. I guess our guardian angel was watching out for us.

We're in California...

2008-07-22T19:51:00.005-04:00

Sorry I haven't blogged but we couldn't access the internet Sunday and yesterday and today have been super busy. I will give you a quick update and write in more detail (with pictures) later.

The limo picked us up right on time and Michael had a ball on the ride to the airport. There were cool lights throughout the limo and they had juice boxes and soda set up in the mini-bar. It was definitely a more luxurious trip to Syracuse then we do on Fridays.

We sailed through security and the check in. Cheryl and Michelle from Make-A-Wish were there to see us off. Then the flight attendant came and took Michael took check out the cockpit before anyone else boarded. Michael enjoyed the flight. In fact - he said that it was the "bestest day of his life" while we were in the air. We changed planes in Cincinnati and everything went smoothly. We thought Michael would fall asleep on this leg of the trip (4 hours) but he didn't. He was WAY too excited.

We landed in Los Angeles and picked up our luggage, caught a shuttle to our rental car and found our hotel with no problem. After we settled in we had dinner at our hotel and went for a swim. Jeff and I took a walk to check out Downtown Disney , which was awesome. Then we went to bed fairly early (early California time, not New York time!) .

Monday morning Michael woke up and didn't feel very well. Over the last week, the Vincristine side effects started showing up. Michael has been walking with "heavy" feet. He woke up during the night Sunday and complained of the "sand" feelings in his hands and yesterday morning, he had terrible pains in his stomach. And although he was somewhat cranky - we headed to Disneyland bright and early.

We took the monorail and Michael was thrilled (he calls it the bullet train like the one in Japan he wants to ride someday). We tried to get him interested in some of the rides but he just wanted to meet Darby. So we headed to the Wish Lounge early and waited for his character meet and greet (which we thought was going to be Darby).

Pooh, Tigger and Eyeore came and Michael was shy at first but eventually warmed up. He even played a game of Candyland with them. When I asked if Darby would be coming, we were told that there was no Darby. I asked if she would be here later this week and was told I misunderstood, there is no Darby at Disneyland. Needless to say, Michael spent the whole day looking for Darby and asking when he was going to meet her and we didn't know what to tell him.

So, I called Make-A-Wish back home and they checked with the Los Angeles chapter and were told that Michael wouldn't be "meeting" Darby at all. He was going to meet Handy Manny at Disney's California Adventure who would escort him to the Playhouse Disney Live Show. There he could watch a Darby puppet but wouldn't be able to interact with her.

Michael enjoyed meeting Handy Manny and the show was a lot of fun but it wasn't what he wished for. I don't want to complain because this trip is incredible and was very generous of Make-A-Wish but I would be lying if I didn't say we are all disappointed (especially Michael) that Michael won't be meeting Darby (and I will leave it at that).

We spent most of the day at Disney's California Adventure and had great time (we all liked it better than Disneyland). We came back to the hotel for a while. We are all rested and cooled off now and are going to go for a swim and then head back to the park.

The rest of the week, we are going to buy another ticket to go to the Disney parks for another day, visit Legoland and check out one of the beaches. I will post again if I get a chance but time seems to be flying. Please keep Michael in your thoughts and prayers, JoAnne

July 20th...

2008-07-20T03:00:00.007-04:00

July 20th has a lot of significance for our family - a lot of it is wonderful but some of it is not so wonderful.

Six years ago today, Jeff and I exchanged wedding vows at a romantic castle on an island surrounded by those closest to us. We picked this date to start our new life together because it is the day my parents got married, my brother and sister-in-law exchanged vows and most recently, my nephew took a bride.

Unfortunately all of those happy occurrences were overshadowed one year ago today when our world came crashing down around us. You see, that was the day we headed home from our Vermont vacation with a little boy that was sick - we just didn't know how sick but we would soon find out.

July 20th, 2007 was the day that Michael was admitted to our local hospital where we were told that the episodes we had been witnessing were partial seizures. And the night would close with our pediatrician gently telling us that the CT-scan that had been done earlier in the evening showed a mass in Michael's brain and that he should be transferred to Rochester immediately for more specialized care. And so began our year of darkness and uncertainty.

And that brings us to today, July 20th, 2008. This dawn is returning this date on the calender back to happy memories for us as we wait for the limousine to arrive to take us to the airport where we will head to California. As you know, we recently learned that Michael's arduous treatments are working and the tumor is shrinking. And now, through the generosity of others, our family can get away from the daily strain of doctor's appointments, needles, medicines and tests and celebrate the future that is looking brighter than it has in a year.

Please keep Michael in your thoughts and prayers, JoAnne

We're ready...

2008-07-19T21:23:00.004-04:00

We are all packed and ready to go on our adventure. Michael is sleeping peacefully - which I didn't think would happen tonight as he has been wound up all day. He could use a good night's sleep since he had a bad night last night. He came into our room around 3am and starting about 4am was terribly sick. (Note to self: buy an extra set of sheets for our bed.) After a brief battle, Michael took his Zofran and was better by the time he got up this morning and had a pretty good day.

We received our itinerary yesterday and that increased our excitement level tremendously. Make-A-Wish has rented a car for us and we have 2 rooms at the Disney Paradise Pier Hotel. We have passes to Disneyland and Disney's California Adventure Park for Monday and Tuesday. Michael also has a meeting with the Pooh characters on Monday and Handy Manny on Tuesday. Wednesday, Thursday and Friday are free days and they have reserved tickets to Legoland for us to use one of those days. We would also like to take Michael to see the ocean one day so we are going to have a busy week. Then we will be flying home on Saturday.

I am going to try to get some sleep now (all of us adults are as excited as Michael) as the limo will be here to pick us up at 8:30am. I will post as often as I can during the week to share our fun with everyone. (It's nice having something positive and upbeat to share with Michael's readers.) Until then - Please keep Michael in your thoughts and prayers, JoAnne

Michael's wish is coming true...

2008-07-16T21:37:00.022-04:00

We're on our way to Disneyland in California to meet Darby thanks to the generosity of the Central New York Make-A-Wish Foundation!! We will be heading west this Sunday, the 20th and returning home Saturday, the 26th. Michael's wish girls, Tammy and Cheryl (with help from Tammy's brother, Tim) threw Michael a surprise announcement party tonight to officially announce the wish. Unfortunately, we discovered Michael doesn't like surprises - but he warmed up after a while.

Jeff's Mom came and picked Michael up after work so that everything could be set up in secret. Tammy and Cheryl turned our backyard into the 100 Acre Woods as they laid out blankets, tablecloths and a whole family of Teddy Bears. Then they added decorations and set up a smorgasbord of pizza, fresh fruits and vegetables, chips and dip and plenty of drinks. A selection of Disney tunes played in the background.

Then all of our family (that lives locally) arrived and we waited for the guest of honor to come home. The 2 ladies on the left in the picture below are Tammy and Cheryl.

And as I said, Michael was overwhelmed when he arrived and saw everyone waiting for him. He went up on the deck and I talked to him for a minute before he finally understood what was going on and happily joined the party.

After our picnic dinner, there was a gift for Michael from Darby.

And you will never guess what it was - a karaoke machine and a stack of karaoke CD's! Michael was thrilled. When we set up the machine, he told Brian that this was the best day of his life.

And then to wrap up the party we had cake delivered by Pooh himself. (That is really Tim but sshhh... don't tell Michael.)

There was a little singing, a little dancing and a whole lot of fun at our home tonight. And now we will count down the hours until Jeff, Michael, Jenny, Brian and I begin our week long adventure. Of course, I will take my laptop and share all the details as they happen so check back often.

Please keep Michael in your thoughts and prayers, JoAnne.

It has been a very busy week...

2008-07-11T22:50:00.013-04:00

Michael and I went to Syracuse for Michael's chemo treatment today and it went very well. I have to admit - after our fantastic news yesterday, it was a different feeling going today. I felt like chemo was a positive thing that is helping us and not just this process that makes Michael feel so terrible. In fact - the last 24 hours are the first time in a year that I've felt that we were beating this thing. And it feels great.

Yesterday, after leaving Dr. Korones we went back to the hotel for one last swim and then we headed to the Strong National Play Museum. We thought this was going to be a small museum that we would spend an hour or so at and then head for home. Boy were we wrong! We stayed all afternoon and didn't see and do half the things there. So, sit back and relax and I will share with you some of the fun that we had.

First, we checked out the Discovery Garden just outside the front entrance.

When you enter the museum, there is a large atrium in which they have relocated an authentic 50's diner in front of a life size facade of a city building. (We grabbed a hot dog in here and it was really fun.)

Next to the diner is an antique carousel.

As you make your way through the museum, the next thing you come across is a replica of the Sesame Street sound stage. It was really neat - did you notice Big Bird and Oscar's garbage can?

Moving right along - we came upon an area dedicated to toy trains including a hands on train table.

And a train you could ride.

The most memorable part of the day for Michael was when a butterfly in the butterfly house (which was one of the most incredible things I have ever experienced) landed on his hand and"tasted" him.

Then Michael got to sit in the cockpit and pilot a helicopter.

This was part of an old Victorian house completely set up. Behind Michael - to the right is a child size table and chairs set up for a tea party and to the left is a parlor complete with a small library and velvet chairs where you can take a break and read a book with your child (there were a lot of reading nooks and shelves full of books throughout the museum).

Here is the house's kitchen. (Remember everything here is touchable and hands on.)

This area is dedicated to nursery rhymes, fairy tales and everything make believe.

There were lots of little stages and play costumes where make believe is encouraged - and our little boy can be King for a day.

This is a giant giant that you could control his arm and head movements with some levers at his feet. (And you can get a good idea of just how big the giant is.)

I guess Michael wasn't meant to be the next King of England!!

There was a huge pirate ship that you could climb and play on and at the base there was a "beach" of fake sand. Michael spent quite a bit of time playing in here.

The last part we visited was the Bernstein Bears.

Michael spent a long time playing in Papa Bear's workshop. There was also a quilt shop, a farm, a restaurant and much more. The kids around Michael's age seem to enjoy this part the most.

Well - I hope you enjoyed our little adventure. As I said, we didn't get through a lot of the museum and I can't wait to go back and see the rest. Please keep Michael in your thoughts and prayers, JoAnne

These are tears of joy...

2008-07-10T10:33:00.003-04:00

We just left Dr. Korones and we are very happy people. We were hoping the tumor would be stable but it looks like it actually SHRUNK!! The difference is noticeable (even to us laypeople) but Dr. Korones thinks it may not be significant enough for the radiologists to label the tumor anything but stable on the official report. That's okay - we saw it with our own eyes and couldn't be happier. Now we will just "stay the course" and pray that next time the tumor is even smaller yet.

We don't have to check out of our hotel until noon so we are going for one more swim and then we are going to visit a toy museum before heading home. Please keep Michael in your thoughts and prayers (they're working), JoAnne

And now we wait...

2008-07-09T15:14:00.002-04:00

Michael made it through his sixth MRI without any problems. We are back at our hotel and he is having some lunch. I am thankful to say that he isn't sick to his stomach like he was last time.

Now we just have to hang out until we see Dr. Korones tomorrow morning. I know that some pool time will be in our immediate future.

I have to admit - I am a nervous wreck and just hope they say the word "stable" tomorrow. I will post as soon as I can tomorrow. Please keep Michael in your thoughts and prayers, JoAnne

It took 2 tries but we are finally here...

2008-07-08T23:00:00.003-04:00

Well - our trip to Rochester didn't go smoothly but we are finally here and settled in for the night. And now we have another hotel story to laugh about.

When I made our hotel reservations, I thought I made them at the Country Inns and Suites we always stay at but when we arrived at the hotel, the front desk clerk couldn't find our reservation. When I showed him the printout of my reservation confirmation, he informed me we were at the wrong Country Inns and Suites (the road for both hotels have the same name - just one is on the east end and one is on the west end). Grrrr... The other hotel was about 10 minutes away so we loaded everything back in the car and off we went.

When we arrived at the other hotel, we were greeted by a large sign at the front desk that said their pool was out of order. I informed the front desk guy that the only reason we stayed in a hotel was so that our son could swim to take his mind off his doctors' appointments. He said that there was nothing he could do and that we couldn't cancel our reservation. We asked him to call the first hotel and see if they had any rooms available. He did but first he took a call from another customer and we overheard him tell them that they were overbooked by about 10 rooms (which will be valuable info when I fight to get my money back).

The first hotel did have a room so back to the car we went and loaded everything in for the third time today (and we don't travel light). The front desk clerk at our first hotel was so nice to us. He took $25 a night off the price for our trouble, gave Michael a bag of treats and little toys and let us take a swim in the pool even though it was after hours.

So, now we will try to get some sleep. We have to be at the hospital at 10 am and the MRI is at 11 am. As usual, Michael can't eat after midnight so Jeff went next store to Wendy's and got Michael some chicken nuggets and mandarin oranges for a bedtime snack. Hopefully they will be on schedule tomorrow and we won't have to wait hours like last time.

I don't know if we will have any results tomorrow but I will update when I get a chance. Our appointment with Dr. Korones is Thursday morning which is when we will get the official results. Please keep Michael in your thoughts and prayers, JoAnne

We had a nice weekend...

2008-07-06T21:34:00.009-04:00

We had a great family weekend! We did some work around the house, played a little, entertained some family and friends and spent a little time just doing nothing. Michael felt well for the most part. He had a stomach ache a couple of times that made him a little cranky but it certainly didn't keep him down.

So, we worked on building a ramp off of our back deck since Chance has been having a real hard time getting up and down the stairs -

Then we headed to the beach -

And did a little swimming -

And played in the sand and water -

It was just a perfect weekend -

Tuesday night, we will be heading to Rochester. Michael will have his next MRI first thing Wednesday morning (at least we hope it is first thing). Then we can't see Dr. Korones until 9 a.m. Thursday, so we will stay over Wednesday night also. I will post and let everyone know how the MRI goes. Please say an extra prayer that the chemo is working and the tumor is still stable. JoAnne

Chemo went well today...

2008-07-03T20:39:00.002-04:00

Jeff and Michael went to Syracuse this morning for Michael's appointment. But first they stopped by the home of one of Jeff's co-workers and his wife who had bought Michael a couple of stuffed animals to take to the hospital today. And when my guys got home, the postman had delivered a package that had made it's way from Aunt Denise and cousin Jame's home in Alaska.

Michael's counts were good and his exam didn't show anything to contraindicate chemo so he received his treatment as scheduled. Jeff said Michael had a snack and fell asleep shortly after his meds were started (as usual).

The staff had ordered lunch for Michael and since he was asleep when it arrived, he ate it in the car on the way home. And I guess he was still hungry so they stopped at Wendy's for chicken nuggets and mandarin oranges - which he finished with no problem. That still didn't fill Michael up and he ate a big helping of sweet and sour chicken and fried rice for dinner. Also, he and I sat on our new patio and had some ice cream a little while ago. And as I am typing this, he is in the kitchen with Daddy getting a freeze pop. I hope all of that is a good sign that this weekend is going to be better for our little buddy than last weekend.

It was pretty rainy here all day so I think Michael wasn't as sad about missing SACC (since they wouldn't be swimming or playing outside in the giant sand box). Michael also told Jeff about the police woman that stopped last night and he was much calmer about the whole thing in the light of day.

Jeff and I both have a long weekend so we have lots of things planned. And if Michael is feeling well, he has requested we go to the beach tomorrow. I will post sometime over the weekend to let everyone know how Michael is feeling. Please keep Michael in your thoughts and prayers, JoAnne

Michael is feeling better...

2008-07-02T23:23:00.007-04:00

The nausea finally subsided Monday night and Michael has had a couple of good days. Unfortunately, chemo is a day early this week (tomorrow) because of the holiday on Friday. Let's hope his little body reacts better this week.

On Monday, Michael started in a summer pre-school program called SACC. It is offered through our local YMCA and he is thoroughly enjoying it. He even asks to go early so that he can have breakfast there. The kids go swimming, play soccer, play in a giant sandbox, do crafts and much more. The way mine and Jeff''s work schedules work out, we don't really need daycare every day but opted for the summer pre-school program for a couple of reasons. The most important being that there is still some concern (and will be until Michael is an adolescent) of learning difficulties from the brain tumor and subsequent surgery. We haven't seen any problems up to this point (and we are very thankful for that) but thought that a continued, structured learning environment for the summer wouldn't hurt.

Of course, Michael had double the excitement today. Before he even got to go to SACC, one of these showed up in our driveway to work -

Michael went and put his work boots on and sat and watched the workers pour our new sidewalk (just to make sure they did it right I'm sure). And last night, a mini-trachoe went by the house to work on our neighbors new in-ground pool and now Michael wants a pool so it can come and work at our house, too!

Unfortunately, even with all that fun today, Michael had a pretty bad night this evening and I am not sure why. He came right in the house when we got home and really didn't have any desire to go outside and play. That is just not like him. Usually we have to fight to get him in the house at night. Then he started crying and saying he didn't want to go to treatment tomorrow. I think that might be because he doesn't want to miss SACC. Or it could just be that his treatment is not on Friday which is out of his routine and has thrown him for a loop.

Then tonight, we had a NY State Trooper stop and ask us if we've had any problems at our home and I told her "no". She told me that our neighbor, 2 houses down, had some vandalism on his property. The neighbor thinks it is one of the neighborhood kids that he had had a run in with recently. This really upset Michael. He was afraid someone was going to come to our house and steal or break our things. I assured him that we are perfectly safe here but I had to show him that all of the doors were locked before he would settle down and go to sleep. Let's hope he forgets about that visitor by morning and doesn't have any nightmares tonight.

Keep your fingers crossed that everything goes well tomorrow. It will just be Michael and Daddy making the trip (I am going to stay at work). I will update everyone tomorrow night. Please keep Michael in your thoughts and prayers, JoAnne

It hasn't been a very good weekend...

2008-06-29T10:05:00.004-04:00

It's pretty hot today so Michael is laying quietly on the deck, enjoying the breeze and trying to stay cool.

Michael has been pretty sick this weekend from his chemo treatment on Friday. He hasn't kept anything down since Friday (including his Zofran) except a small bowl of fruit last night. I was supposed to go to Binghamton for one of Jenny's bridal showers yesterday but didn't because Michael was so sick. And today we were going to go to an air show with my Dad at the local army base but had to cancel because Michael wasn't up to it.

Michael is sick like he was when he first started treatments. His little body must have gotten used to the chemo medicines over the last 5 months. But with his 6 week hiatus while his counts were down, it must have gotten used to not having chemo. I hope his body adjusts again quickly. When we originally planned his Make-A-Wish trip, he was on his 2 week break and should have been feeling good. Now the trip is right in the middle of one of his 4 week treatments. The same is true of Jenny's wedding. He was supposed to be on break and now has to have chemo the day before the wedding. Keep your fingers crossed that he feels up to enjoying those 2 things this summer. JoAnne

We were good to go today...

2008-06-27T20:17:00.007-04:00

We made the trip to Syracuse this morning. We didn't have Michael's blood checked at home this week because if his counts were still wacky, we wanted the doctors to check him over good anyway. Fortunately, all of his counts were perfect and he was able to receive his treatment and his monthly antibiotic. Everything went well. I think everyone was happy to see Michael and I know he was happy to see them.

Last night, at Michael's last t-ball game, he collided with one of the kids from the other team as Michael was running to catch the ball and the other kid was running to second base. We heard the collision all the way across the field and they both fell to the ground like stones. Michael was laying on the ground crying, so Jeff went out on the field to check on him. He brought him back to the bleachers and we could tell right away that Michael was already starting to develop a nasty bruise on his knee and a fat lip. He rested for a couple of minutes and then went back to finish the game.

When we got home, Michael asked me to take a picture of his knee so that if it healed overnight, he could still show the staff in Syracuse his latest battle wound. As each of the doctors and nurses greeted Michael today, he recounted the details of his adventure and showed them each his bruise. The phrase "plastic bubble" came up numerous times and Michael laughed each time.

We were a little sad today - one of Michael's regular nurses, Aileen, is retiring Tuesday so today was our last time visiting with her. She said if she is ever up this way (heading to Canada) she would stop and see us and I hope she does.

Here are a last couple of pictures from Michael's first t-ball season:

Hitting the ball - he has been practising with Daddy and got a couple of really good hits this past week.

Here he is rounding the bases and heading for third.

Michael informed us last night that now that t-ball is over, he would now like to try basketball !! I didn't have the heart to tell him it is the wrong season. Swimming lessons start back up soon, so I think he will be happy with that.

Our little buddy is resting now. Let's hope the Zofran keeps him from getting sick. Please keep Michael in your thoughts and prayers. JoAnne

Graduation pictures (finally)...

2008-06-26T22:07:00.011-04:00

I'm sorry I didn't post the graduation pictures Tuesday night as promised but it has been a rough week around here. We thought we were going to lose Chance and it was breaking all of our hearts. She has been having problems with one of her back legs for a while. A month ago, the vet said it was torn ligaments and gave us some medicine. We gave it to her faithfully but she seemed to get worse instead of better.

Tuesday night, Chance was outside with Michael and I when suddenly she couldn't stand up. We tried for a while to get her up and finally had to call our neighbor and his son to carry her in the house for us (Jeff was at work). She stayed where they laid her for the whole night. It was the first night in her life that she didn't sleep in our bedroom on her doggie bed.

The next morning Jeff took her to the vet and we were sure she wouldn't be coming home. Michael and I cried while they were gone until Jeff called and gave us the cautiously optimistic news - they saw a different vet and she gave a different diagnosis.

The doctor said it is actually nerve damage in her spine and it is causing something similar to paralysis. This diagnosis makes more sense to us because we never thought Chance was in pain or suffering like she would with ligament damage. And it turns out that she's not - she is numb. The vet gave us some medicine and said if Chance was going to get better, we would see improvement in 2 days. I 'm thrilled to say that by this morning she could stand and walk with a limp. She still isn't 100% but at least now we have some hope and some more precious time with her.

And now - without further ado: Our favorite Pre-K Class of 2008 !!

First, the class delighted the audience with a couple songs complete with hand gestures.

Then they waited patiently for their turn to walk up to the podium to receive their diploma.

Here is Michael receiving his diploma from the school principal, Mr. O'Donnell.

And here is Michael with 2 ladies he is surely going to miss, his teacher, Mrs. Adams (left) and the classroom aide, Mrs. Littlefield (right).

It was a wonderful ceremony and I am sure Michael will keep wonderful memories of his first year of school tucked in his heart always.

Keep your fingers crossed that Michael can receive chemo tomorrow. JoAnne

Promising advances in treatments...

2008-06-20T06:22:00.007-04:00

When Dr. Pilcher gave us Michael's diagnosis of a pediatric brain tumor, one of my first questions was "Is he going to survive?" Dr. Pilcher responded that he has several patients that received the same diagnosis as Michael at a young age and that they were now young adults. So, yes, he believes he will. But he added that even if things don't go as planned, every day we buy Michael brings new and exciting treatments and cures.

I came across the following article online in the British newspaper, The Telegraph, and it brings me hope that someday (hopefully very soon) they will be able to do something similar with brain tumors. (I have read where they are working with something like this in brain tumor patients in Switzerland.) My greatest hope is that Michael will not only reach adulthood but be able to lead a full and happy life free of the threat of his tumor advancing (I've never been one to dream small!). And that he can do so without further surgeries or poisonous drugs. This story gives me that hope:

Cancer patient recovers after injection of immune cells
By Roger Highfield, Science Editor

A cancer patient has made a full recovery after being injected with billions of his own immune cells in the first case of its kind, doctors have disclosed.

The 52-year-old, who was suffering from advanced skin cancer, was free from tumours within eight weeks of undergoing the procedure.

After two years he is still free from the disease which had spread to his lymph nodes and one of his lungs.

Doctors took cells from the man's own defence system that were found to attack the cancer cells best, cloned them and injected back into his body, in a process known as "immunotherapy".

Experts said that the case could mark a landmark in the treatment of cancer.

It raises hopes of a possible new way of fighting the disease, which claims 150,000 lives in Britain every year.

Ed Yong, health information manager at Cancer Research UK, said: "It's very exciting to see a cancer patient being successfully treated using immune cells cloned from his own body. While it's always good news when anyone with cancer gets the all clear, this treatment will need to be tested in large clinical trials to work out how widely it could be used."

However, the treatment could prove extremely expensive and scientists say that more research is needed to prove its effectiveness.

Genetically altered white blood cells have been used before to treat cancer patients but this is the first study to show that simply growing vast numbers of the few immune cells in the body to attack a cancer can be safe and effective.

Normally there are too few of the cells in a patient's body to effectively fight cancer.

Dr Cassian Yee, who led the team at the Fred Hutchinson Cancer Research Centre in Seattle, said: "For this patient we were successful, but we would need to confirm the effectiveness of therapy in a larger study."

The work raises hopes that this approach could not only offer a more effective treatment for skin cancer, or melanoma, which kills around 2,000 people in Britain alone, but be applied to other cancers too.

The patient was one of nine with metastatic melanoma, that is skin cancer that has spread, who were being treated in a recently completed clinical trial to test bigger and bigger doses of their own white blood cells.

Larger, more elaborate, trials are now under way.

Almost 9,000 new cases of melanoma, the most serious form of skin cancer, are diagnosed every year in Britain, and nearly 2,000 patients die from the disease.

Prof Peter Johnson, Cancer Research UK's chief clinician, said: "This is another interesting demonstration of the huge power of the immune system to fight some types of cancer.

"Although the technique is complex and difficult to use for all but a few patients, the principle that someone's own immune cells can be expanded and made to work in this way is very encouraging for the work that Cancer Research UK and others are carrying out."

Immunotherapy, in which a patients own immune cells are used to treat cancer, is a growing area of research that aims to develop less-toxic treatments than standard chemotherapy and radiation.

Because cancer occurs when the body's own cells grow out of control, the immune system only responds weakly.

The ability of the body's own defences to tackle cancer in this case is all the more remarkable because most deadly feature of the disease is its ability to colonise other parts of the body, when it becomes much more difficult to treat.

A dramatic example of immunotherapy was reported two years ago by one pioneer of the field, Dr Steven Rosenberg of the US National Cancer Institute, who eradicated cancer from two dying men using genetically modified versions of their own cells.

Both Mark Origer and "Thomas M" were suffering from advanced melanoma but the hope is that such methods could be customised to attack other common cancers, notably breast, colon and lung.

Dr Rosenberg told The Daily Telegraph the new work is an "interesting study that helps to confirm the effectiveness of cell transfer immunotherapy for treating cancer patients. We have now treated 93 patients with metastatic melanoma using their own anti-tumour cells with response rates up to 72 per cent. Mark Origer remains disease free now over three years after treatment."

Please keep Michael in your thoughts and prayers, JoAnne

No trip to Syracuse again this week...

2008-06-19T22:13:00.006-04:00

Jeff took Michael first thing this morning to have his lab work done for this week. Dr. Kennedy called this afternoon, after receiving a copy of the test results, and said Michael's ANC counts are still too low to receive chemo. She said Michael's platelets are up to 268 from a low of 21 a couple of weeks ago (which is great) but his ANC only went from 412 to just over 600 (and the minimum to receive treatments is 1,000). She said he has plenty of "new" monocytes, so his total neutrophil count should be good next week. Dr. Kennedy thinks that Michael has been fighting some sort of strong viral infection that didn't manifest any symptoms and that that is why his counts are so screwy. So, it looks like we get another week off.

I will admit though that I am starting to panic (just a little). I am afraid that by not receiving chemo for 6 weeks, that the remaining tumor in Michael's head will start to grow again and we will get bad news when Michael has his next MRI (which is scheduled for July 10th). Dr. Kennedy said that Michael's tumor is a slow growing tumor so she hopes that there are enough chemo drugs still in his system to deter the tumor from growing until we can resume treatments. She also said that Michael will only receive a dose of Carboplatin at 75% of the strength he has been receiving for the next maintenance phase (4 weeks). If his counts are good after that, he will go back up to 100% with the following round.

Overall, Michael is doing well these days. And, I am happy to report that he is almost bruise free!! He has been sleeping a little more than usual but has plenty of energy to do his favorite things when he is awake.

Like playing outside and driving his tractor around the yard...

And playing t-ball...

And he had a ball at Family Fun Day at school last Friday. When I got there, the younger kids were in the gym (where it was cooler) playing with the parachutes and having a great time...

(That's Michael in the plaid shirt and blue shorts.)

And he's is still talking about the giant slide they had for the kids...

I'm so glad he didn't have to miss out on the day with his friends. And tomorrow is the last Friday of the school year, so I am happy Michael gets to go to school tomorrow (since he can't have chemo). Graduation is next Tuesday, so be sure to check back Tuesday night to see pictures of our little graduate. Until then, please keep Michael in your thoughts and prayers, JoAnne