Wednesday, August 30, 2006

Day +29 A Whole New World

WBC 2100
Platelets 63k
Hemoglobin 10.5
Weight 11.8

More WBC! Weight is stable with only breastmilk and rice and whole milk for dinner. The rash looks like it is lighter, not as angry. It has not spread too far, just a little more dots on his forearms. I've been taking pictures to show the progression and will post them soon. Child Life and OT came to play today, so I got about 2 hours break. His attitude improves when other people play with him.

The big news of the day was going outside! We did not have the chance last night. He fully cooperated in putting his mask on. He was so excited. He rode his scooter in the hall, then to the outside patio. A whole new world out there! Airplanes, spiders, flowers, leaves, birds, butterflies, flags blowing in the breeze, and the moon. When he sees his mask he says, "Outside?!" with a giggle! We had a happy day! (Note: He does not need to wear the mask outside, just in buildings and crowds. While outside, I asked him if he wanted to take it off and he said, "No!).

A whole new world
Don't you dare close your eyes
A hundred thousand things to see
Hold your breath - it gets better
I'm like a shooting star
I've come so far
I can't go back to where I used to be


Lizzie sent a blood sample on Monday for chimerism studies. The term "chimerism" refers to the presence of lympho-hematopoietic cells of a different origin or how many cells belong to the donor. The analysis helps predict transplant outcome and helps doctors assess the use of different prophylactic medication to promote engraftment and decrease GVHD. Results should arrive by Sept 1 or 5.

We are looking forward to the transition to Ronald McDonald House (housing for Stanford patients and families that live more than 30 minutes away) in about 2 weeks. David and I will be at RMH for 2 months, until Day +100. We will go for walks, play outside on the play structure, and spend time (not money) at the Stanford Shopping Center.

Here are the meds he is going out on:

Med: Prograff (similar to cyclosporine, suppresses T-cells)
Med: Acyclovir (prevents infection)
Med: Fluconozole (prevents infection)
Med: Steroids (stops GVHD)
Supplement: Chewable Multivitamin
Supplement: Folic Acid supplement
Sugar Water: IV hydration - done overnight

That's it for now! Only 4 meds! This is unheard of! I know of other children going home on 8-10 different medications. I'll update if things change.

1 comment:

Susan McNally said...

Good news and more good news.

A walk outside-- so wonderful. What a joy for you both. Three meds-- wow! I am delighed.

Love and hugs to both of you.