Tuesday, April 22, 2008

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

1 comment:

Lisa said...

OK, I have to say it so just bare with me....
STOP IT RIGHT NOW! As much easier as it would be, you can not blame yourself, second guess yourself, or in any way try to feel that you did anything wrong. Hindsight is always easy, dealing with the present is not.
It is perfectly normal to have these feelings, vent about them, and try to pinpoint the "why". Just don't ever believe this mess is because of you not doing something, or not having all the answers. Just don't go there!
I can feel the pain in your words and cannot begin to imagine how you handle this every day of your life. Know that you are an inspiration to me with everything that you do. It may not feel like it, but you are handling this all so well. Seriously.
Now, go treat yourself to something, anything. A quiet cup of tea, a long soak in the tub, and nap, whatever you want. You deserve it! If you don't take care of yourself, who will take care of Michael? I think both of you can benefit from the comfort.
Chin up, give him a hug, and keep on loving.