A belated Happy New Year to everyone! We’ve had an eventful 2014. We haven’t posted an update in a while because we’ve been spending a lot of time at the infusion clinic lately. This past week we were there every day, all day. The day after New Year’s, Sophia’s doctors concluded that her liver disease has relapsed. Her liver enzymes started to quickly rise again. At the same time, her immune cell counts are going up as well. These are the immune cells that we’ve been trying to kill with chemo. This means she needs another course of the super strong chemo that requires a 5-day stay at the hospital. This is the chemo that knocks out a big chunk of her immune system for 9 months. It’s not uncommon for children with autoimmune disease to require multiple courses of this chemo for it to work. When she gets this chemo, the 9-month clock of having to live as a bubble baby will be reset; so instead of coming out of the ‘bubble’ in July, she’ll have to wait until November, if she gets the chemo in February. We don’t know when she’ll get this chemo. We were ready to be admitted to the hospital for it two weeks ago, when one of her lab results indicated elevated levels of the fungus aspergillus in her blood serum. This could be very bad news, as it can be a tough organism to get rid of in someone who is so immunosuppressed. The super strong chemo cannot be given if she has an active infection. So it is postponed until we bring the aspergillus under control. To combat this fungus, Sophia now receives 3-4 hours of anti-fungal infusions every day. She also receives potassium infusions run over 12 hours every night, to combat the potassium loss that is caused by the antifungal medicine. In addition, she needs to take a lot of nasty tasting potassium 4 times a day (with some resistance, of course, but she is getting impressively more cooperative about it). This intensive therapy has to continue for at least 4 weeks after she tests negative for aspergillus. As of this week, she is still testing positive for it. In the meantime, her liver enzymes have thankfully quieted down a bit. So at least she’s not in urgent need of the chemo. Her hemoglobin levels started teetering this week, but the latest numbers have been encouraging. On a brighter note, Sophia continues to be very happy, energetic, and chatty. She loves hearing and telling stories. She also likes to keep her parents in check. If we ever can’t find something (which is often these days, given the chaotic home we haven’t been able to tidy up in a while), we can just ask Sophia and she’ll know where it is. Or the other day when Jeff was hooking up Sophia to one of her infusions at home, he had forgotten to flush her picc line with saline, and Sophia called him out on it, “Daddy goofed! Needs to use saline first.” She also likes to make fun of her mommy for being klutzy, tripping over toys on the floor and bumping into things. This morning, when Jeff tripped over something in the kitchen, Sophia laughed and excitedly reported, “Daddy lost his balance, like Mommy!”
Posted on: Sun, 19 Jan 2014 05:53:13 +0000