Friday, October 10, 2008

Quiet Milestone

Last week, on October 1st, Henry passed the six month threshold since his second stem cell transplant. Just days prior to that we had his tubes removed and as of that 180 day mark, he could return to school.

Henry's much older now than when he left his school, just about a year ago. His need to be around other children to play is very evident most of the day as he just wants a playmate. "Daddy, you pretend that..." "Daddy, you have to be this truck and I'll be that one." "Daddy, when will Anna and Sophie be home?"

So last Thursday he began preschool again. Just a couple days a week for now. He has so many adjustments to make, after all. Socially he must learn to be with kids again, he needs to learn to sift through the noise that typically accompanies groups of children, and his immune system has to relearn how to fight many of the common bugs that are out there.

As a result, he's been sick recently, runny nose, coughing at night, and, yes, vomiting. This last one is enough to drive parents of a child with a brain tumor to drink. The throwing up, shaking and crying are all too reminiscent of events that we'd really rather forget. We're coming up on his next MRI soon - in November. I think you could probably graph with high accuracy our moods during the ensuing months. Immediately after MRI results, feeling good. That stays steady for about two or three weeks, then the doubt starts to creep back in. Is he eating enough? Does his balance seem ok? How are we going to explain that vomiting spell? As the MRI approaches, the mood steadily descends into deeper anxiety and at times, flat out panic.

We breathe deeply and reassure ourselves, after all, what else can be done but to wait and be grateful for the days we have.

Sadly, this is not the case for all of our friends. We have what they so desperately wish for now, time and hope. Recently another family that has a child with anaplastic medulloblastoma was told by their doctors, that the disease is too far advanced and they've been through all but the most unlikely treatment options. Sophia, age 4, was recently recommended for hospice care. They have responded with the grace that a situation like this can bring you to when your care for your child outweighs the fears of tomorrow. They are focused on squeezing the life out of today and memorizing their child. Our thoughts are with them.


Granya said...


You say it all so well.

My sorrow goes out to Sophia's family, accompanied by fear and anxiety for you, yours and ourselves.

Selfishness surfaces, guilt prevails, and hope stays alive.

Anonymous said...

I constantly look to see the lastest on Henry. My heart aches when MY son feels ill, can not imagine how you feel every time Henry vomits or does not feel good.
I pray for you guys all the time and I can only hope God will comfort you all continuously!and Keep Henry in his care!
Keep us updated. We love you guys.

Cousin Susan H.

Anonymous said...

Have fun at preschool Henry!
Aunt Karen

Anonymous said...

I hope by now Henry is feeling better - you are in our thoughts and we do appreciate your keeping us informed.
Hugs from
Linda and Val

Anonymous said...

You all continue to show such strength and courage and we on the outside looking in can only imagine the fears you live with on a daily basis. Henry is blessed to have such a wonderful support system.

What exciting news to hear that Henry is back with his friends in preschool!

You all are always in our thoughts and prayers.

Love, Julie, Brad, Patrick, Andrew and Samantha

Jen said...

I'm so glad to hear that Henry's back at preschool- he must be loving it! Although my daughter was much older when she was diagnosed (8 years), we did find that a lot of the socialization problems haven't shown up until a few years later. I'm glad that Henry's at a great age for catching up!

It's heartbreaking seeing your friends with children who do not share the same good outcome- I always felt almost guilty going to funerals or corresponding with people whose children had passed away after mine got better. But without exception, those parents were able to accept my support in the spirit in which it was given, and be happy for my daughter. I can't imagine the strength that takes.

My thoughts go out to Sophia and her family.