Wednesday, November 7, 2007

No Guarantees

Its amazing what a few hours of sleep can do. When Henry went to bed last night I didn't feel like I could put two sentences together. He woke up telling me he heard a helicopter - the Hopkins Life Flight lands on the building we're in - and pointed out that "you didn't" in that little sing-song teasing voice that kids master somehow with no example. I changed his diaper, being careful to save the strip they have us put in it to collect a sample. Only moments later he was tossing his blankies, beeble (binky), and toys aside saying "I think I have to throw up!". He's 100% on that prediction. I grabbed the bucket and held him up. Its over quickly and the nurse was quick to re-administer his Benadryl which was only a few minutes from expiring. So now its his new favorite, 'Dora the Explorer' at 2am instead of cookies.

I lay back down after this episode but recurrent thoughts pounded my brain. Perhaps exhaustion has its benefits. One of the things I still can't quite wrap my head around is the rarity of his condition.
The Central Nervous System (CNS) malignancies represented 16.6% of all malignancies during childhood (including adolescence). CNS cancer as a group was the second most frequent malignancy of childhood and the most common of the solid tumors. In the US approximately 2,200 children younger than 20 years of age are diagnosed annually with invasive CNS tumors.
-Cancer Incidence and Survival Among Children and Adolescents: United States SEER Program 1975-1995

Medulloblastoma, Henry's type of CNS cancer, accounts for about 20% of that 2200. For those his age, the incidence is only about 10 in every million. Then account for those considered high-risk. At this point, the 'why him?' impulse occurs to me, but in the same instant I know there's nothing to be done. I really prefer to believe that he's always had it, that its part of him, and to wish it away or deny it, would be to deny him. I'm just not about to do that. Its kind of like his mood or his hair color. It just is.

We all have expectations about what will happen for ourselves, our kids - but there are no guarantees. None of us know how long we'll have here to experience life's wonder and each other's love.

5 comments:

Granya said...

Dear Bryan,

You are right, we don't know how long we will live to experience each other's life and love.

Henry's Challenge has certainly helped "reset" our priorities. I am reminded of Maslow's Hierarchy of needs. The 3 most basic needs: physiological, safety, love and belonging. Those are Henry's priorities right now - and mine too.

Anonymous said...

Bryan - I can only repeat what I have said before - I am in such awe of you, Tara and little Henry. You are truly remarkable people. You poignant words and stories make me think, wonder, laugh and cry - sometimes all 4 at the same entry. Your family (inc. Linda and Jane) has taught me so much. I am blessed and thankful to have met you all and to help in any way is a privilege. With love and gratitude from Maury

Anonymous said...

I too agree. No one knows how long we have here on this earth. Going blindly, day by day, taking for granted is one way. I for one have always thanked GOD for my life/health as well as for my children's. I am so sorry that Henry has to prove this point for those of us who have missed it.

But there is hope. My son Scott (19) actually went today to give blood at HCC. He wore Henry's bracelet and proudly gave knowing that he saved a life. Maybe his presence influenced some other teens to give?

Please let little Henry know how brave he is and that because of him, a life was save today.

teresa

Anonymous said...

Bryan Tara & family
I'm a cousin of Rod living here in KS. Want you to know that little Henry and each of you are included in each day's prayers.

Hang in there little guy, you can do this.

Judi Brack Johnson

Anonymous said...

Bryan,
I hear such worry in your email today. It is so hard to see children sick and when it is your own it is just unbearable. Hang in there, you are an awesome Dad.
I am so glad I got to meet you all last June at the reunion. I feel
so close to all of you thru this blog site. God Bless little Henry, he will fight this awful
thing that has invaded his body and
grow up to talk about it to others!

We love you all.
Susan Herren