February 15, 2007

I apologize for the amount of time that has passed since the last update; I’ve been trying to take over the email writing for awhile to give Angela a break.

Most recently, this past Saturday we went to a picnic for my command which went well. Justin played with all the bigger kids, who developed the nickname SAM for him (Super Afro Man).
He mostly just chased them around, but he had fun. Gabriel was in good spirits too, repeatedly climbing up the jungle gym and going down the whirly slide. He was quite proud of himself, expressed in the statement he made after each run, “I did it, Daddy. I did it.”





Saturday evening however, Gabriel’s legs started shaking and he complained that his knees hurt. He wasn’t able to walk or even stand up. Because joint pain is common, we didn’t think anything else of it at that point. But later that night he woke up crying (which is also common because of the nightmares) but this time he had a fever of 102. It was about 2:00 am, so we reluctantly began waking up the other kids and packing a hospital bag. As we got him dressed we noticed his G-tube site was red, swollen and protruding and leaking puss and brown drainage.
We were admitted around 3am, and his ANC count was 38. They put him on antibiotics but his fever continued through the night. The doctors couldn’t figure out what caused this count to drop from 1100, which was his count three days prior. They did some other tests, including a chest X-ray. They didn’t find much, save that his sodium and potassium were low. He also received a blood transfusion because his hemoglobin dropped to 7.4.
Fortunately this time, Gabe’s monocytes were high, so his counts recovered much quicker than last time. His chemo, however, is on hold until his ANC reaches 1000. In the maintenance phase, rather than having to make up chemo, we are able to skip the doses that he isn’t able to receive due to low counts.
This March completes the first official year in his total of 3 years that make up the protocol. The doctors believe he’ll be able to start pre-preschool in the fall.
Right now Gabe has developed C-Diff from the antibiotics (again), and, due to its extremely contagious nature, requires we use gloves when changing him and bathe him frequently throughout the day.

Medical aside, Gabriel and Justin alternate interest between Justice League, Star Wars and Ninja Turtles. Most recently, Gabriel has taken to putting on the super man muscle-chest and cape while Justin has been trying to use the force to move objects. They like assigning different figures powers, which they describe to me in as vivid detail as their limited vocabulary allows, which includes ‘super strong, super fast, shoots eye lasers’ and ‘fly super fast’. Their favorite drama scene, currently, is to have one guy hanging from a cliff and another flying to the rescue. Justin’s favorite is still Spiderman, and Gabriel’s is still Batman and Superman.

Adrielle has been a terror on all fours. Besides getting into everything that isn’t 3 feet above the ground, she’s been frequently accused of taking food out of Gabriel’s hands or off Justin’s plate while they are sitting on the floor watching movies. She likes trying to play the toy piano in the boys room as well. She follows the boys wherever they go and devours anything in her path.

Well, that’s the most recent scoop. I hope to keep the updates flowing about twice a month. I hope the content was both informative and entertaining. We thank each of you for your continued support and prayer.

Steve