Just wanted to update you on how Tyler’s doing and share the latest information we have. Tyler completed his first cycle of chemo Thursday night. He now has a 26 – 40 day inpatient stay where they wait for his blood counts to recover to safer levels. For the first 3 weeks, his counts are expected to be critically low.
Once his white cell counts start to increase, they will repeat the bone marrow aspiration to see if the chemo actually made a dent on his cancer cells. Based on what they find, he will either wait longer or will start his second 10-day cycle of chemo. We’re praying to see measurable improvement, so that we know the chemo is putting his disease into remission (a certain level of remission is necessary before he can get a bone marrow transplant). The second course of chemo will be harsher than this first course was.
During this recovery period, Tyler continues to be at great risk for infection. His hair is falling out noticably now, and the sores in his mouth and GI tract are worsening. He’s also lost quite a bit of weight since admission – about 13 pounds. Still, he has very little pain or discomfort, so that’s a HUGE blessing!
Some who are familiar with more common types of luekemia have asked why Ty has to remain hospitalized during his chemo and recovery cycles. His doctor explained that it’s rare for most kids with leukemia to stay inpatient, but for AML, the standard chemo is so toxic that trying to manage patients at home often results in fatality. Tyler will require platelets and blood tranfusions on a regular basis as well as IV antibiotics. And as always, his body has zero ability to fight off infection on its own.
At any rate, the next month or so will be extremely boring for Tyler as long as he doesn’t get an infection. We’re hoping to fall into more of a routine with tutoring, homework, visits, exercise, etc. My goal is to put some fat back on his bones so he will be ready for the next onslaught.
On the bone marrow donor front, we’re still waiting for the completion of his typing; then they will begin to check the registry. We did learn he is blood type A+ and CMV-. It is ideal for his donor to share the same blood type and CMV status, but they can work around that if they have to. We also learned the donor must be under age 60.
Oh, and one more bit of news to report: Team Tyler raised nearly $2000 for the Leukemia and Lymphoma Society at the Light the Night Walk yesterday in Annapolis. Thanks again to my co-worker who organized the team and to all those who walked and donated in Tyler’s honor. He was pretty excited that the team raised almost double their $1000 goal!
Thanks to each and every one of you for your continued interest, prayers, and support to Tyler and our family! We love you!