Message from Andrea - April 28, 2009

Musings
Posted 2 hours ago
Today is a nice, quiet day with Julian napping a bit this morning. He is doing OK lately. Tired of having tubes dangling from his chest and asking when those will be gone.... gaining some weight, working on his "homework" at times (worksheets and art projects provided by Lil' Lighthouse Preschool; we miss him going to school there!), and resting. Last Saturday, he went to Nolan's Little League game for the first time this season and it's more than half over. It was great to be there again -- even for 1/3 of the game. But mainly, he is resting up for his next round of chemo, May 6-8.

Since our last update, Julian did have a brief stay in the hospital (Easter Sunday plus 2 days) because of a fever at home that left as quickly as it came. Not sure if our thermometer was on the blink, but it was a good thing (actually, a God thing), in retrospect, that he spent a few days at CHOC right at that point because it so happened his white blood cell count was basically at zero. Had he caught anything then, he would have had no resistance and probably would have gotten a blood infection. So, we praise God again for orchestrating and maneuvering in ways that we do not fathom. And we thank you for your continued prayers.

We also found out that Julian tested positive again for the MRSA strain meaning that he'll be isolated again while in the hospital. So, if you come to visit, you'll have to gown up. Actually, with the swine flu going around, I'm kind of happy he'll be protected. (FYI: about 20% of the population has MRSA. It only becomes a problem when an infection flares up in vulnerable persons, i.e. the elderly and chronically ill.)

Good news: Julian's little friend who we met during radiation, Emily Galvan, had a clean MRI and is officially in remission! She has the same diagnosis as Julian. This is the news that family had been waiting for for a very long time and I'm sure they are absolutely loving life right now.
Please continue to pray for Julian, Emily, and new friends Adrian, Cody and another Julian.

Thank you to Julian's cousin, Lindsey, who is a blood donor match for him. He received her blood during his March hospital stay. You rock Lindsey (and so does your mom who is donating blood for other CHOC kids)! Anyone interested in becoming a blood donor for Julian or other CHOC patients should call (714) 532-8339 .
Blessings,Andrea

HOME AGAIN - MESSAGE FROM ANDREA

Posted Apr 5, 2009 6:24pm
Just a quick update: Julian was finally discharged from CHOC on Friday, April 3rd! Our 3-day stay turned into 10. It's a good thing we were able to go home because I honestly don't think I could have kept him there one more day. He was so ready to go home and was very worried that someone might move his Legos. Fortunately, most of his Lego creations were still in the same place where he left them. We are trying to get the hang of a new feeding program and 'round the clock meds. Julian is pretty tired much of the time, but he has moments when he perks up and does a little jig or surprises us by saying something funny. He'll have 1X weekly outpatient chemo treatments until his next overnighter, May 6. Hopefully, that one will be much shorter than this one! We are praying for our new friends we met at CHOC: Adrian and (another) Julian, as well as Emily.