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.

And with that...

...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.