Message from Andrea - October 19, 2009

Ducks, chickens and RBCs
Posted 17 hours ago
So glad we went to CHOC today for Julian's monthly IV infusion of an antibiotic because every time we go to a clinic or infusion appointment his blood is drawn and we immediately find out more about his current condition. Today we learned that his white blood cell count is very low right now, and so is his red blood cell count. So, he'll be receiving a transfusion of hemoglobin tomorrow morning. On Thursday, he'll have labs drawn again during his scheduled clinic appointment. Hopefully they'll show that his WBC and RBC counts are creeping up. He loves to go on outings to Fresh and Easy and to the library, but we'll have to limit our trips right now to the backyard or maybe to the nearby duck farm to feed the chickens (no sign of ducks lately). He's been doing so well lately, except for tiredness which can be explained by his low RBC. His hair is starting to grow back again (it's in the 'fuzz' state) and he is doing more and more of the things he used to do. Even the vroom vroom sound effects he makes when playing with cars and Legos have come back. He has really enjoyed the late afternoons on the driveway, riding his trike while Nolan and our neighbor friends Maya and Lilly ride their scooters. It's amazing how gentle the kids are around him. He has some trouble with his emotions and can't keep up with the kids physically which causes the tears to flow, but the kids will slow down and, at least for now, let him win when they play a quick round of hide n seek or red light/green light. No word yet on when the next MRI is scheduled, it should be done within the next four weeks, and he'll have another audiogram before his next round of chemo to see how his hearing is compared to his last test. I don't really notice it getting any worse, so hopefully that will be good news. One spooky thing: Julian wants to be a skeleton for Halloween. We were really glad when, for the longest time, he said he would be a duckie for Halloween. But now he wants to scare those same sweet girls who play with him so nicely. But he promises that next year he will definitely be a fuzzy yellow duckie.

Message from Andrea - October 9, 2009

Dear friends, just wanted to send another update as the Tumor Board met this morning and reviewed Julian's most recent MRI. Thankfully, they did not spot anything along the spine, but they did note something at the tumor site in the brain that they had not seen previously, a little 'tail' on the cavity where the tumor had been. This hadn't been there in earlier MRIs. Our doctor said the group didn't think it looked like cancerous growth because it normally isn't shaped that way, but they want Julian to have another MRI in one month. Please pray that this turns out to be only scar tissue or something totally benign. Also, he will have more chemo this weekend, so we would ask for God's protection on his body as these chemicals go in and destroy the bad cells and hopefully spare the good ones. For a sense of their potency, one of the drugs he is getting is a derivative of mustard gas.
Julian continues to be a trooper and a love bug and makes us all laugh and smile. He loves his daily rituals. Every morning, after changing Bun Bun (his stuffed bunny) into his daytime clothes, he brings a treat to our dogs, Smokey and Bandit. And every afternoon (after first setting the table for dinner -- in that order), he gets on his trike and burns rubber in the driveway daring anyone to cross his path. As the kids do their laps (Nolan on his razor), Rich is the race ''pronouncer,'' as Julian likes to call him. After a while, Smokey, the neighborhood cat (there are 3 pets on this street named Smokey), wanders into our yard and Julian especially loves going after him with his squirt gun. Last night, two girls from the 'hood joined him and Nolan in chasing Smokey, back and forth, through the holes in the fence. Tonight, we saw a repeat of the same but three more kids joined in and the gathering evolved into a road rally on the driveway complete with nerf guns, chalk, razor scooters and bikes. It was exactly like many nights here a year ago. The radio gets turned on an oldies station ('70s music gets everyone happy). Julian didn't want it all to end and the other kids didn't either and we kept the action going until it was almost dark.

Message from Andrea - October 7, 2009

So much to write and so hard to condense it all. Most recent news first: Julian had an MRI today of his head and spine. Even after 3 surgeries and 27 sessions of radiation (where each time he was put under with propofyll -- aka Michael Jackson's famous ''milk''), it's still unnerving to have your child go under general anesthesia. We met with Dr. Loudon, his neurosurgeon, afterward who said, in his pensive way, that overall it looked good (Praise God) but there continues to be an ''enhancement' at the site where his tumor had originally been. He said they will watch it and discuss Julian's case at Tumor Board this week. It's probably the scar tissue, he said. We are so grateful that they did not see anything new. Truly, truly. It certainly could have been different news. Yet, the more we are learning about medulloblastoma, the harder this gets. It's a beast of a disease and very aggressive. That's why he needs MRIs every 3 months this year, and every 4 months next year, 6 months the year after that, etc. Recurrences at the site of the tumor are ''common'' and usually occur within the first 2 years, one article said. Significant impact on the endocrine system. Cognitive impact. Toxicity to various organs. Stature impacted. High-risk for another malignancy. Long-term, life-long health issues. I can go on and on. Early in his diagnosis, I clung to the words, ''he has an 80 -85% chance.'' I naively thought that, even though he would go through a year of treatment, we had dodged the bullet! I was so relieved that he had medulloblastoma and not one of the other brain cancers. But medulloblastoma itself is a terrible, terrible cancer and it is robbing him of so much now and in the future. I guess after learning that a boy named Noah (cp: NoahDowell), who was only one year older than Julian, died of brain cancer last weekend at CHOC and then reading more about what medullo is going to do to Julian over time, it just makes the nightmare worse. Forgive me for unloading. I usually try and keep things positive, but I just need to share my thoughts tonight. Maybe the fact that he is 2/3 of the way through is contributing to these feelings. Right now, we have a plan to hang on to, a protocol, and we are following it and, thank God it seems to be working. But when the chemo is done and we complete the plan, then what? How do we keep the beast away? There is no plan after that. Just to trust God even more. And pray. And live life. One day at a time. Just like the doctor told us the day after Julian's first surgery. ''Don't fret about if he'll marry someday, or go to college. Just take it one day at a time.'' It's simple advice and actually something you have to consciously practice, taking life one day at a time, but it really does help. And, as another friend said, one day at a time is all any of us really have, isn't it? Good night and blessings.