Thursday, January 22, 2009

This is Michael's brain on...

...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 !

Tuesday, January 20, 2009

We're here again...

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.

Monday, January 12, 2009

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

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.

Tuesday, January 6, 2009

Some new news...

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.

Monday, January 5, 2009

Michael's counts are up ...

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.