Sunday, January 15, 2012

Jan 15

Two doses in and so far so good. I took Clay on Wednesday to the clinic so Dr. P could see him. He said "Wow, who are you? You look fabulous, and there is so much more of you!" Clay has gone from 39.5 lbs to 48 lbs in about 3 weeks. We continue to taper the steriods, but it is a slow road. Clay was down this week for a few days with the stomach bug, but today when he woke me up at 7:30 he reported that at 3 a.m. he had been downstairs to have a bowl of cereal and a corn muffin. So his appetite is back. His vision seems to be holding steady -- we don't know where it is compared to what was his normal, but he can see colors, can color, and can get around pretty well. We aren't done holding our breath since we saw how quickly his vision deteriorated last month, but we are hopeful. The plan is to have 2 more doses of Avastin, and then do an MRI in the middle of February. If we see stable or shrinkage, then we will remove the PICC line and schedule another port placement. This will put me out of a daily job flushing his line, but it will mean Clay can swim and shower again.

Wednesday, January 4, 2012

January 4

Clay's vision has improved over the past ten days. Before Christmas he was able to detect only shadows and contrasts while today he is able to discern most images and colors. He is able to recognize letters and numbers on his kindergarten work book. While none of these observations are clinical measurements the improvement is unmistakable. Does Clay have "normal" eyesight or even "normally bad" eyesight? No. He suffered permanent damage after his first trauma and this latest episode has further degraded his capabilities. However, the recent improvement has moved him from "clinically blind" to a state where he can function under his own power. For this gift, we are truly grateful!

To what do we attribute this trend? The steroids have had an impact right from the start, but Clay's Doc feels that most of the improvement is indication of the Avastin/CPT11 doing its job. Dr. Packer, not a very effusive person, wrote to us that this news "made his New Years." Packer feels that in the situations in which Avastin proves effective that it shows efficacy very quickly. Mary and I are being very cautious in this stage; we are guarding against "false positives" and are aware that even when the drugs are working against the disease they make Clay very susceptible to life-threatening brain bleeds as a side-effect. But, as we have outlined in previous posts, there are few options left for Clay--- his disease is non-operable, radiation therapy is a final-ditch effort that would need to be so comprehensive that he would be severely damaged by it, and there is no known chemo or biologic cure. Our goal is to "buy time" in hopes that medical science can out-run the disease.

Finally we do not underestimate the POWER of positive energy and prayer that has been directed at Clay. Mary and I are convinced that the support is not just comforting but impactful. Whether it be the nightly reminder from the McDowell children, the prayer groups of neighbors and teachers, the Pizzano family's gift of water from Lourdes, or the daily half-hour devotions of my Aunt Roni, we know these and many other signs of faith and love are helping. Thank you all!

As far as daily life, Clay continues to succeed in having an upbeat attitude. There have only been a few times during these "dark" hours when his frustrations and fears have overcome him. For instance, after Christmas eve mass our family tradition is for each person to open one gift from under the tree to take a little pressure off the wait till Christmas morning. This year Clay unwrapped his selection and tossed onto the ground sobbing: " I hate this, I can't see my presents." In addition to the vision problems, Clay is also tolerating discomfort of an IV line (temporarily implanted in his left arm), along with side-effects of a massive steroid dose----the most noticeable being his ravenous appetite. He is eating something close to 5,000 calories per day---awakening at 3 am to eat bowls of cereal for what is the first of three breakfasts. He has gained about 20% of his body weight in 10 days. Even so, yesterday Clay returned to kindergarten where the excellent teaching team guided him through a successful first day back.

-- JD