A change in plans ...

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 ...

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 ...

... 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...

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 ...

... 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 ...

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 ...

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 ...

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 ...

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 ...

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...

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

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...

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...

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.