April 2010, Consolidation

This month has been a good month for us from a medical standpoint, and we've also enjoyed visits from Casper's Yia Yia (Grandmother), his "Granny Nanny" Janet, Uncle Louis and Aunty Marian, and Aunty Sascha. Although Casper's mood improved quickly following Induction, it has taken some time for him to morph back into his original shape (we're still working on the chins :0)), and for his legs to start functioning again. The muscle in his legs had atrophied considerably from the steroids so, unlike the rest of his body, his legs were very thin and spindly by the end of March and he had to spend time re-building the muscles again. The process of re-learning to walk, though, was generally a joyful one for Casper. The first day he crawled across the room successfully he squealed with glee, "Look at me Mama, Dada, look at me!!". It was as if he forgot that only weeks before he'd been running and climbing. He spent a few days proudly "showing" Amelie how scoot across the room. Next, he started jumping in Amelie's little doorway jumper, and then staggering across the room holding onto the baby "lawn mower." For Spencer and me, seeing him work so hard to just balance himself had an undercurrent of horror, but Casper's pure delight at each success ended up shifting our own perspectives about the whole ordeal and we too found ourselves delighting in each little achievement. Casper is now walking quite steadily, and attempting to run which is also quite amusing to witness.

The latest treatment phase called "Consolidation" has been a 29 day regime. We are almost at the end of this phase now. It has involved Casper taking nightly chemotherapy pills, and going in three times during the period for intrathecal Methotrexate (another chemotherapy drug). He had to be sedated for these three treatments as they inject the chemotherapy into his spine. He has experienced few painful side-effects to these drugs other than being somewhat miffed for a few hours following his treatment and having one unpleasant late-night trip to the Emergency room, but luckily he was able to be discharged the same evening. Casper's next appointment is on May 3rd, so we'll see then what is in store for the next couple months. We are hoping he will continue to improve and return to Sunflower House for a couple days a week so he can catch up with his "homies".

The other big news from this month is Amelie turned ONE-YEAR-OLD!!! She had fun eating her first meringue, and staring at her cake before Casper blew out the candles for her and unwrapped her presents. Next year, I doubt she'll let Casper take this on, as she's definitely starting to hold her own, that's my girl!

Finally, one last plug for Audrey who will be shaving her beautiful hair off on Sunday to raise money for Children's Lymphoma and Leukemia research. Obviously we think this is a very noble cause and urge people to check out her webpage and the St. Baldrick's foundation webpage for more information.

Audrey is Shaving Her Head!!!

Many of you know (or know of) Audrey. She is Casper's "handler" when ma and pa aren't around. So, a few days ago she dropped a bombshell of a surprise on all of us by announcing that she would be shaving her head bald at the upcoming St. Baldrick's Foundation event on May 2 in honor of Casper. St. Baldrick's raises money for cancer research and staffing money, and does cool things with it like fund research for less profitable solutions, or positions for young up-and-coming doctors who might not otherwise get the nod for scarce federal dollars when pitted against Member-of-the-Establishment doctors...our kind of organization. Anyhow, Audrey is raising money to help St. Baldrick's continue its noble mission, in honor of Casper no less, and so we're plugging the event right here, right now:

http://stbaldricks.org/participants/AudreyThomas

There is also hypertext link to the page on the "Links" page of this blog.

Go Audrey Go!

(This plug was written by Dad -- Mom had nothing to do with it other than censoring some of its content.)

End of Induction

The last couple weeks have been somewhat challenging and fatiguing. Towards the final days of his steriod regimen, Casper started to experience some severe side-effects. In addition to the freaky amount of weight gain (see pics), he also lost the ability to balance and stand up. Additionally, the drugs severely altered his personality, and we felt as if we were witnessing him morph into a completely untamed wild animal in front of our eyes. During the past few days of the 'roids he spent literally all day and all night growling and crying (in-between mouthfuls of macaroni and cheese). Any attempt by us to soothe him was predictably returned with a swipe and a "Go Away," or a "I don't like...". He was very upset and in chronic pain, and Spencer and I felt quite helpless in our efforts to comfort him. We were able to keep him well fed though, Spencer spent a couple weeks on the couch downstairs primed to respond to Casper's requests for food throughout the night.

Thursday the 25th of March marked the last day of Induction, which also meant the last day of steriods (at least for the time being). Casper went into the hospital and had another bone marrow aspirate, lumbar puncture and the picc-line in his arm was replaced with a "port." The results from these tests are a crucial factor in predicting how he should (in theory) respond to treatment, and in determining which protocal in the treatment "road map" he will be taking.

We received the results back from these tests this past Tuesday, and we were cautiously optimistic to learn that Casper has continued to respond very well to treatment, and that he is officially termed "in remission" at this time :0). His treatment protocol at this point should be the most benign, toxicity-wise, of the four arms on the map, but as with all the protocals it will remain a three-year program.

It's amazing to see the resiliency of youth. Within a day of being off the steriods, the storm cloud above Casper's head subsided and the rate at which the transformation took place was astonishing. The past few days have felt surreal, it has really been therapeutic to see him smiling, laughing and cuddling, and all of us have felt emotionally re-charged by the return of his quirkly little personality. Unfortunately, Casper still hasn't gained back the use of his legs yet. The doctors are confident that this is a side effect of both the steriods combined with one of the chemotherapy drugs, Vincristine. He still has one more dose of Vincristine so this may not change for a while, but the good news is at least he's deflating, so carrying him around is not quite so crippling!