Message from Andrea - June 14, 2009

Clouds on the horizon
Posted 13 hours ago
Hello! Finally, a long overdue update on Julian.
While Julian’s had a nice break between chemotherapy cycles these past few weeks, last week ended with another trip to the Emergency Room. Thursday night he couldn’t keep anything down and had chills, woke up with a headache and just didn’t seem well, so we went to the clinic. He was started on antibiotics just to be safe, labs drawn and we were able to go home. But later that afternoon, a fever and a headache hit him quickly and we knew the routine that awaited us: rush to the E. R. and plan on being in the hospital at least 2-3 nights (standard routine for oncology patients with a central line to rule out an infection in his Broviac). His fever continued during the night, but by morning he began to feel much better. Unfortunately, the blood culture reveals he has a bacterial infection (pseudomona) and will need a 10-day course of an IV antibiotic. They know how to treat this bacteria but it isn’t harmless and can cause complications if it resists the treatment. It also means that his scheduled chemotherapy (round 3 was supposed to start this Wednesday) will be postponed for a bit. Today’s M.D. said not to worry, as long as it isn’t postponed say, for 4 weeks or so (medulloblastoma is so aggressive), there aren’t any concerns about impact on Julian’s long-term outcomes.
So… we would greatly appreciate your prayers that the infection will respond to the antibiotics and that there will be no additional complications or opportunity for cancer cells to grow. There are always potential complications for kids who have compromised immune systems. It seems like the sky is the limit in terms of things that could happen to them.
I will find out tomorrow if we’ll have to remain at CHOC for the next 10 days or if we can go home on home health care. He is still isolated due to being MRSA positive, so we don’t cherish the idea of him being stuck in this room for 10 days…
He was also scheduled for an MRI this coming Wednesday, but at this point I don’t know if that will still remain on the books for this week. Each day, we find out a little more.
Prior to this episode, we’ve had a fairly uneventful few weeks – a welcome state of being in our case. Although there was a brief hospital stay in May for a fever, he tolerated his second round of chemo in May really well and was a trooper going to follow-up clinic appointments and even getting a new nasal/gastric tube placed in his nose and having the old one pulled out. We went to Nolan’s last few Little League games, the team party, short trips to the library and a special outing to the La Habra Children’s Museum last week (they opened the doors early so Julian could have the place to himself for an hour). His preschool, Lil’ Lighthouse Preschool, included him in their graduation activities last Tuesday even though he hasn’t been to school since Dec. 4 and made him feel very special. So, we’ve had a wonderful and semi-normal few weeks lately.
But during times of calmness like what we had in May and early June, there is always the nagging question in the back of my mind, “is this the calm before the storm?” We still have 32 weeks of treatment ahead of us, so we dearly hope that any storms Julian encounters -- including the current one-- will be like the storms we have in Southern California: really mild and hardly worth mentioning on the 6 o’clock news. God bless.