Monday, August 4, 2008

What do you say

I know a woman whose son is Brody's age, actually 2 weeks younger than Brody. Dante has neuroblastoma, a rare and very dangerous cancer. They found it right after Christmas. A fever that would not go away.

I read Dante's mom's updates on A group of women organized a sort of support group and we try to help by sending gifts. Dante's mom says it helps her. I hope so.

Through Dante and his family, we have heard trickles of news about a little girl, Avery, who is 4. Avery is treated at the same hospital as Dante for the same cancer. Avery's cancer was found at the end of April, 2008.

Avery's doctors just told her mom on Friday that there was nothing more that they could do, that the cancer had filled every part of Avery's brain. Avery has between a few weeks and a few months to live. No one really knows.

I've cried every day since learning about Avery. And I don't even know Avery or her mom in even the slightest way. Except thanks to I learned how her mom told Avery's siblings that Avery was going to die, and I learned how it feels to take your child home from the hospital and wait for hospice workers to appear on your doorstep.

I'm not hormonal. I'm not pregnant. I say that because even I think I would be I'm so upset about this news. I've completely internalized it and I think it's a little irrational of me to be so upset. I've known for years that kids have cancer, and die. I've known since Brody was born that his life was at risk.

As I cried into my husband's shoulder last night I kept asking him why, why would this happen. He said we should be even more grateful for Brody and what a miracle he is. I just kept thinking this last Christmas they had no idea it would be Avery's last Christmas.

She's 4 years old.

And how do you do that? How do you watch your child die? How do you make her smile when you are dying inside yourself? What can I say to Avery's mom, a stranger? What do you say to someone you've never met, you never will meet, about their child dying? And why do I care about what to say? How arrogant for me to even think that anything I can say will help or not.

If you're reading this, please spare a good thought or a prayer for Avery and her family. I'm off to a deposition.


Carolyn Wing said...

I was sent here by a google alert for neuroblastoma. Does Avery have a carepage? I am praying for her, and your family. Hugs and prayers. Carolyn Wing grandma to Laura Stage IV neuroblastoma page name LauraVDB

Carolyn Wing said...

my email is

Wendy (ourfirstbaby2006) said...

Chris I don't think there are any words for Avery's family. I couldn't even make it through their update from home (too many preggo hormones). It's heartbreaking.
Don't feel bad that we can't fix this for them. I'm sure that just our prayers mean the world to them. Hug Brody a little tighter tonight.

SaRaH said...

((((((Chris)))))) There are no words and its so unfair. God bless Avery.

Liam's Friends at OXO said...

I happened upon your post as I too have a child fighting this deadly cancer. My sons name is Liam and he is now 4 years old. Liam is one of the most amazing and beautiful child you could ever wish to meet and or be the father of. Our worlds were shattered a little over a year ago when in just 48 hours went from a normal family to one whose world would be tipped upside down and never righted. A year later Liam was cleared of his cancer, in preschool, and everything seemed to be getting back to some level of normalcy when his most recent scans came back abnormal. A week later another surgery revealed a new tumor on his Kidney and now he is back on chemo. Neuroblastoma is one of the deadliest of all pediatric cancers with only about a 30% chance of survivial for high risk cases (most are stage 4 wen diagnosed) and the relapse rate is over 50%. Most people are not aware of the fact that pediatric cancer is the number one disease killer ofo fchildren under the age of 18. It takes the lives of more children than Aids, Muscular Dystrophy and many ther diseases combined and it is on the rise in the US. The saddest news is that there has not been a new pediatric cancer drug brought to the market in over 20 years. Why you might wonder? Well because it is not profitable for drug companies to invest in drug development and new treatments. Most innovative research is taking place due to private funding and philanthropy but it is not enough. More people need to know the facts and the reality families and children face who are chosen to fight cancer. The treatments in many cases were designed for and intended for adults and kids often get higher doses of chemo and other toxic drugs in an effort to save them but the very treatments intended to help them often cause other serious and life threatening side effects. It is a dark and viscious battle with very little in the way of hope. Breast Cancer research and fund raising is a well oiled machine and hundreds of millions of dollars are raised and because of this 90% of woemn diagnosed today survive. The same effort and national support needs to be focused upon the needs of pediatric cancer if there is ever going to be real hope and a dramtic change in the outcome of these brave children. I have made it my mission to fight back against this deadly thief of dreams and wrecker of lives. If you want to know more about Liam and his amazing spirit feel free to visit his blog. Some days the writing is sad but it is quite possible that his spirit will ignite something inside of you and if nothing else make you thankful for all that you have and to love each other a little but more each day. Liam has inspired more people than we might ever know.

Proud father of this amazing child

My Carousel of Progress said...

Our thoughts are with this family and of course the child.

pattinase (abbott) said...

Once you learn the fragility of life, it opens you up in a way you've never been open to hurt and pain and sorrow before. Some of its a good thing, but it can be exhausting.

Susan said...

I watched my child die of neuroblastoma. You say as sincerely as you can "I'm so sorry this happened" and in your case "I wish I could have met Avery" and "Avery's story has touched my life and I will never forget her"

They don't seem like much, but really, they are far better than nothing. Sign the guestbook if there is one and do it again a few months down the road when the messages stop coming. Just let them know that Avery will not be forgotten.