We are home safely...

We had to travel six and a half hours round trip today for a 20 minute doctor's appointment. How frustrating! Michael was wonderful. Especially considering he had to spend so much time strapped in an uncomfortable car seat. Thank heavens for portable DVD players.

I am not sure how I feel about our meeting today. Dr. Wang did a thorough neurological exam on Michael. He said Michael's left side is "tighter" than the right side. I asked him if he thought this neurological deficit was from the Vincristine or the tumor. I was positive he would say the Vincristine but he said it was definitely from the tumor. That was very disheartening to hear. If any neurological problems were caused by the chemo drugs, they would correct themselves soon after Michael's treatments were finished. But, if they are from the tumor, they won't get better unless the tumor goes away (either by surgery, chemo or the miracle I pray for every day).

Dr. Wang said to watch Michael when he runs, if he contracts his left arm, that is a problem. If that happens, we are to work with him to encourage him to extend his limbs. It wasn't discussed today, but I am assuming that if the problem progressed and we weren't able to correct it, Michael would have to go to physical therapy. I have seen Michael favor his left arm. I assumed it was a subconscious instinct to protect his port-a-cath. Now I am not so sure. I will have to watch him closer.

Dr. Wang wants Michael to have an EEG in July to see if there is any seizure activity. He also said Michael will have to stay on the anti-seizure medicine for at least 2 years after he is done with chemo and the tumor is stable. Then we will wean him off and see if he has anymore seizures. Dr. Wang also made the statement that Michael may have to stay on the Tegretol for the rest of his life. He alluded to the fact that the seizures may be an issue separate from the tumor. Only time will tell.

It's funny - as this ordeal progresses, I am losing confidence in my ability to determine what is normal with Michael and what is not. I thought going to nursing school many years ago, answering hundreds of calls as a volunteer EMT and having already raised two children safely to adulthood was proof that I could do that. I am not so sure anymore.

Recently I thought Michael's eyes looked tired and I thought he was just wore out from all he has been through. But then I saw on another mother's blog that her daughter (a couple of weeks behind Michael in their treatment plans) had the same symptom and it was eye droop from Vincristine toxicity, I knew then that I was wrong. She posted a picture of her adorable little girl and her eyes looked just like Michael's. I know this wasn't a big mistake and there is nothing we can do about it, but I was wrong nonetheless.

And I can't seem to forget that a year ago, when all of Michael's symptoms began, I missed little signs that in hindsight were so obvious. I often wonder if we had gotten a diagnosis months, or even years earlier, could Michael have been spared his current ordeal.

When Michael was a baby, he was very sensitive to bright lights and loud noises. I was even concerned about the possibility of Autism. But when I discussed my concerns with Jenny (who is not only my daughter but a special education teacher) she agreed with me that there would be other symptoms, which Michael just did not exhibit. Also, Michael has always been a terrible sleeper. I don't think he has slept all the way through the night more than a dozen times in his lifetime.

Then last spring the frequent vomiting started and I attributed it (along with our pediatrician) to post nasal drip, a nervous stomach, lactose intolerance or perhaps allergies. And when his eye started "twitching" when he felt sick, I thought was a sure sign that everything was caused by nerves. Even though an internet search for "morning vomiting in children" returned results for brain tumors. When I mentioned my finds to my family and Michael's doctor, they told me to stay off the internet and to stop looking for trouble. And, I too believed that there was no way my baby could have a brain tumor it had to be one of the more mundane diagnosises. It always was in my life.

What if I had been more insistent in ruling out a brain tumor 3 months before it was actually found? I am not blaming myself for the fact that Michael has a brain tumor (at least not today) but I do wonder if the tumor had been found before it was so large or had grown around the artery in his brain, would there be less of a dark cloud hanging over Michael for the rest of his life? Was it actually a Stage I tumor in the beginning that progressed into a Stage II tumor? I guess those are questions I will never know the answer to and we just need to keep moving forward. But, I will always wonder. Please keep Michael in your thoughts and prayers, JoAnne

Michael's climbing a tree because that's what Michaels do best...

Our weather has improved dramatically since last week. A week ago Sunday I awoke to a light blanket of snow covering our deck . This Sunday, our 85 degree day broke records for high temperatures in our area. I think we skipped spring and went straight to summer.

Michael enjoyed the beautiful sunshine immensely. Sunday, we had breakfast on our deck with my Dad, Jenny and Brian (Jeff had to work). We had nice conversation and then the 3 kids flew a kite and played in the yard. (It doesn't matter that the 2 oldest aren't "kids" anymore - they are when they are around their little brother.) Michael started climbing a tree and when I asked him what he was doing, he said "I'm climbing a tree because climbing trees is what Michaels do best" (borrowing a line from Tigger).

Today Michael stayed home with Jenny while Mommy and Daddy went to work. They ran some errands together and then went to the zoo and playground together. On the way home, they stopped at the party store to buy decorations for Michael's birthday party in a couple of weeks. I am sure it will come as no surprise when I tell you that we will be having a Tigger and Pooh party for Michael's 5th birthday.

Michael's appetite has been down this week but at least he hasn't had a lot of nausea. We have to make a trip to Rochester tomorrow for a checkup with Michael's neurologist. His appointment is late in the afternoon, but I will post and let everyone know how things went as soon as I can. Please keep Michael in your thoughts and prayers, JoAnne

Michael's not feeling well today...

Michael came into our room around 5:30 am this morning and shortly thereafter starting throwing up. And when I left to go to work, he was still sick. Our insurance company filled his anti-nausea generically and we don't think it works as well. I will ask Dr. Kennedy for another prescription next week and make sure it is filled with Zofran.

I also forgot to tell you about an incident at the hospital yesterday. While the nurse was pushing Michael's pre-meds, he got a funny look on his face and started fidgeting. He then started saying in a panicked voice "My butt is itching, my butt is itching". The nurse said that is one of the possible side effects of Decadron (an anti-nausea medicine). She said the kids sometime complain of an ithcy nose or butt. By the time she finished explaining that to me, Michael had settled down and said the feeling was going away but I do think it kind of scared him. The nurse said they will drip the Decadron next week so that doesn't happen again.

I know I have said a couple of times that the generosity of people amazes me. A girl scout troop in Syracuse donated 317 boxes of Girl Scout cookies to the pediatric oncology unit! They offered the families a couple of boxes to take home and then will be putting the rest out as snacks for the kids until they are gone. How wonderful!Please keep Michael in your thoughts and prayers, JoAnne

Here is the update I promised...

Well, it was back to chemo today. And it really was a day early. When Jeff took Michael to chemo 2 weeks ago, they said they would call with our next appointment. As promised, they called and left a message on our answering machine that said Michael's next treatment would be April 17th at 11:30 am. So we showed up today - right on time. Imagine our surprise when the nurses were shocked to see us. It seems our appointment was actually tomorrow at 1:00 pm and the receptionist left the wrong message. We were wondering why they switched us to Thursday. Luckily they were nice enough to fit us in.

Chemo went well. We had to wait awhile for the official blood counts to come back from the lab because Michael's platelets (red blood cells) were borderline low. In the end though, they were high enough to receive his treatment. We had picked up the movie "Alvin and the Chipmunks" (which we hadn't seen yet) to watch at the hospital today. Michael had everyone in the unit smiling at his uncontrolled laughter while watching the movie. Unfortunately, once the medications kicked in, Michael zonked out and didn't get to watch the whole movie.

It is funny how easily we slipped back into a normal life the last 2 weeks. Michael felt great and had loads of energy. I think that is why I haven't posted much the last couple of weeks, we were busy doing all sorts of "normal" things. The picture to the right is the "secret project" I talked about a couple of weeks ago. We are refurbishing a desk that used to be my Dad's when I was a little girl. I will post more pictures in a couple of days when we are finally done. Our little guy also started eating all of his old favorite foods that had tasted funny to him the last 10 weeks. It was wonderful to see.

Unfortunately, Michael noticed the difference in the way he was feeling and made the connection that he had felt so bad the last couple of months because of his treatments. So, when I told him last night that he had to go back to getting treatments today, he cried and begged me not to take him - he didn't like being sick. In the end, he accepted it and was fine on the trip to the hospital today. By the way - the trip from our house to the hospital is exactly 25 Disney songs long. "How does she know that?" you ask. We found a couple of Disney Tunes CD's that used to be Jenny's and Michael plays them every chance he gets.


Michael finished the soccer program at the YMCA last week. He did very well the last night. They played a very informal game and Michael had a lot of fun. The instructors gave all of the kids a soccer medal on a neck ribbon. They were all so excited you would have thought they were made of solid gold! Michael also finished the first round of swimming lessons and received a certificate. The next swimming class starts this week and he can't wait.

It has been school spring break here all week. Michael has been asking everyday if he can go back to school "tomorrow". I haven't broke it to him yet that he won't be going back until next Wednesday. They added Monday to the vacation schedule since they had an unused snow day. Then on Tuesday, we have to go to Rochester to see Michael's neurologist for a routine checkup.

It's wonderful how much Michael loves school. He brought home his latest report card last Friday and it is another wonderful one. He improved in a lot of categories and his teacher wrote the following touching comment:

"I'm very impressed with Michael's progress. Not only does he recognize his letters, but he knows many (letter) sounds and can count to 59. He's great at predicting the next story event and his circle of friends is widening."

I wasn't surprised about the friends comment as Michael now talks about all of the kids in his class by name and even knows little details about their personalities and families. I am so excited that he is fitting in with the other kids. They went out on the playground at school for the first time this spring and Michael got to play with all the other kids. I was so happy for him. I will never forget the heartbreak I felt last fall when we picked him up that one day and he was sitting by himself and looking so forlorn.

Well, I think I will end with a picture I took tonight of Michael on our back deck. His asked his Dad to take his easel out there so he could "paint the sunset". He did a pretty good job, too. (The funky hairdo in the picture is because he fell asleep during chemo.) Please keep Michael in your thoughts and prayers, JoAnne

Dr. Korones called...

Dr. Korones called this afternoon and it's official - Michael's tumor is stable on this scan! So, we will continue with the next 48 weeks of chemo. His next treatment is on Thursday this week. He should also get the IV antibiotic, so we will see how he does.

I will post as soon as I get a free moment. I have a lot to catch everyone up on - report card, swimming lessons, soccer, and so on. I have some pictures I will post also. Please keep Michael in your thoughts and prayers, JoAnne

No word yet...

I just wanted to post quickly to let everyone know that I haven't heard from Dr. Korones on the official MRI results yet. I will post as soon as I hear. Please keep Michael in your thoughts and prayers, JoAnne

We're home from Rochester...

We got home about 8:30 this evening from our latest trip to Rochester. It was a very long day but at least we didn't have to drive through snow! We had to be at the hospital at 11:30 am and Michael wasn't allowed to eat anything after midnight last night. He was supposed to be sedated and taken to MRI at 12:30 pm. They didn't come to get him until 20 minutes to 2 pm. Considering Michael hadn't eaten since dinner last night, he was wonderful. He tried to negotiate with us a couple of times about getting something to eat but he never cried or carried on. After awhile, he just laid with his head on my shoulder and waited. He is such a good boy (I know I say that a lot but he never ceases to amaze me).

We found out today that they don't usually do pediatric MRI's on Thursday so Michael was "white sheeted" (or fit in to the schedule). That means that if anything else comes up, the anesthesiologist does that first. We told them this afternoon, to schedule Michael on the regular pediatric MRI days when we go back in July so that he won't have to suffer through hunger waiting for them to get around to him. That means it will be a 2 day trip since Thursday is Dr. Korones's only office visit day.

We had gone to Rochester last night and stayed at the hotel we usually stay at. When I made the reservations, we thought Michael's MRI would be early in the morning but it didn't work out that way. We kept Michael up late last night so he slept in a little this morning. Then we played in the pool to distract him from his hunger until it was time to go to the hospital. That strategy worked out well. He certainly loves to swim.

After Michael's MRI, we saw Dr. Korones and a neurological resident working with him. Dr. Korones said, with the chemo protocol that Michael is receiving, that about 50% of the time the tumor shrinks, about 40% of the time it stays the same size and about 10% of the time it continues to grow. Preliminary results of Michael's MRI show that the tumor has remained stable. We were hoping it would shrink but I guess we can accept that at least it didn't grow. Dr. Korones also said that there is a chance that the tumor could shrink as we continue with the maintenance phase of chemo. One comment he made that made us happy was that, statistically, children whose tumors remain stable fair as well over the long run as children whose tumors shrink. He said that he knows instinctively that seems unlikely but that in fact that is the case. So, we'll continue to take each day one at a time.

I talked to the neurological resident about one of my concerns on the pathology report from Boston. In addition to the tumor diagnosis, there was an additional diagnosis that wasn't in Rochester's report that said "possible neuronal heterotopia in adjacent brain". When I researched this, I found that this was brain cells that didn't form correctly in vitro and it looked like they were a completely different issue from the tumor. It also appears that they can be the focal point of seizures, even in patients that don't have brain tumors. I was correct on both points.

The resident stated that the neuronal heterotopia didn't cause the tumor but that it is possible that this "abnormality" in the brain could be why the tumor settled where it did. But she explained that they are 2 separate issues. She stressed that the pathology reports says that this abnormality is at the cellular level and we may never have known about it if the tumor hadn't reared it's ugly head. In other words - yes, it is "possible" that they exist but that they are not something to be concerned about. The tumor and resulting scar tissue would be much more likely to cause seizures as Michael matures. (And only time will tell if that is the case or not.)

We finally left the hospital around 5:30 pm. Of course that meant we hit Rochester's rush hour traffic perfectly. And to make the trip home even less pleasant, Michael was sick to his stomach before we even made it out of the parking garage and was sick every time he woke up all the way home. He was able to keep down some Rice Krispies and a couple of popsicles after we got home and is now peacefully sleeping.

Dr. Korones said that he should have the "official" MRI results tomorrow and will call with them. I will post again tomorrow night and let you know what he says. I will also update everyone on what Michael has been up to the last couple of weeks (since I have started getting those "you haven't posted in a while" phone calls and emails again - sorry). For now, I am totally wiped out and am going to head to bed. I hope Michael feels well enough to sleep all night. I think we can all use a good nights sleep. Keep Michael in your thoughts and prayers, JoAnne