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.

No news yet...

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...

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...

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...

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...

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.