Tuesday, April 28, 2009

Alexander's Journey

I spend so much time here focusing on Joseph and his cancer journey, his death, my loss. I often get people who ask me how I can hang onto hope. They don't know how I do it. They could never be as strong as me. They could never handle it if that happened to their child. I have to say, when my head isn't necessarily in the right place and I am not feeling charitable (because usually I DO understand that most people MEAN well even as they stick their feet in their mouths), it angers me. Yes, you could. I am sure nobody MEANS to imply they love their child more than I did and do mine. Surely they don't mean to say that. They are trying to pay me a compliment and 90% of the time that I how I take it. 10% of the time, I am cranky and think "Bullshit!"

In any case, this young man is a big reason why I can see miracles even in the face of the tragedy of Joseph's loss. Alex is 11 years old now, but when he was just barely turned 5 we found out he had a brain tumor called a Craniopharyngioma. This is a benign brain tumor that behaves malignantly. What that means is that it cannot spread to the spinal canal, but it can invade different structures in the brain and it is a recurrent tumor. It tends to come back. Believe it or not, in the brain, a benign tumor can be just as bad as a malignant one. There's nowhere for the tissues to go when locked inside the skull. Any swelling is bad. And benign tumors do not respond to chemotherapy. Some respond to radiation, but radiation to a five year old's brain can be devastating. We had no choice but to go forward with all the risks involved in the attempt for a complete resection.

Alexander's tumor was about the size of a golf ball and had grown around to encapsulate his pituitary gland. It was near the optic nerves and the center of the brain that controls personality and appetite. We were warned he might come out of his surgery blind, a completely different child in personality and with the inability to ever feel full again..that he may have an appetite disorder that causes him to have the drive to eat incessantly. We were warned he might develop a criminal personality, that he may eventually die of severe obesity at a very young age, that we may need to get a chain and lock for the refrigerator. And of course there were all the usual risks of digging around all the blood vessels of the brain and what have you. It was a very dark time in life, as Stewart and I were going through our divorce right in the middle of it and things were not as settled then as they are now. To be honest, I don't like to talk about it much. What's weird is that it looks like a walk in the park compared to what Joseph went through, but it wasn't. It was horrible.

We had a party for Alex the night prior to surgery at Chuck E. Cheese. He was in preschool at our church and his little friends came to be with him. It was as if he were celebrating, as if he really knew what was coming. I suppose on a rudimentary level he did. He had "lifesavers" on his head to be used by the surgeons the next day to help locate the tumor, but that didn't seem to bother him or his friends. They had a blast.

The surgery took a total of 14 long hours. He has an incision from one ear to the other, zig-zagging across his head to keep his hair falling naturally and not just on either side of a long scar, creating an unnatural part. His face was folded forward through to his brow and the front portion of his frontal skull removed. They then went along the side of his brain to approach the tumor up from underneath and to remove it painstaking bit by bit. Every hour or so they would call us from the O.R. to tell us how things were going. We were given our own private waiting room. It was hell. Friends came and played cards with me, which helped.

The tumor contained a viscous, oily substance that is very toxic, and some of it spilled out as it was resected. After he was cleared to go home, his head swelled up like a mushroom and he was raced back to Children's, where he was diagnosed with chemical meningitis...probably the most frightening part of the whole ordeal. He was a pretty sick little guy, with no desire to play, talk or interact....which is truly disturbing in a five year old.

Alexander lives his life with a host of medical management, as he has no endocrine function at all. The pituitary gland is the "mainframe" gland that controls most of the other glands in the body. He has medications that replace those functions and gets growth hormone injections six out of seven days of the week. Without his medications he would swiftly die. We are going on six years since the tumor was removed and Alex continues to thrive. He is a straight A student, plays sports, makes friends and is active in Scouts. He has a normal life expectancy, though he will need to be checked for recurrence all his life. Should the tumor return, as he gets older, the less risky it will be to do radiation on it, which should eradicate it forever. This is my Alex in his school picture for this year...fifth grade. His scars are nearly undetectable. He is the most inspiring person I know.


Lizz said...

Thanks for sharing that. In all my years of knowing you, I never knew the story behind the brain tumor, only that he had one.

Jason, Allison & Charlotte said...

I'm with Lizz... thank you for that story. You're an incredible mom, who's had more than her share...


karengberger said...

Wow, Sheri. Thank you for telling us about dear Alex. I didn't know anything of the extent of what he (and all of you) went through. It boggles my mind to think that you have been through this AND Joseph's illness. What a beautiful young man, with a Scout's character, achieving so many good things in spite of the difficulties of daily medicines, injections, etc.
God bless all of you.