Having a quiet early morning moment in Tyler’s hospital room. Ty is sleeping; no nurses are here, and nothing is beeping. Since Sunday, Tyler has been able to have longer stretches off his IV pole, which has had a very positive effect on his mood. The last 5 day stretch of his chemo only involves one drug, and it is given only twice a day, over a 15 minute period. The other two drugs kept him tethered to his pole for about 10 hours during his awake period, and tired him out much more. Also, starting on Sunday, his labs were good enough to keep him off IV fluids during the day, as long as he drinks enough fluids on his own.
Tutoring is going well so far. He had to switch from the biology he was enrolled in at Chapelgate to Chemistry with Liberty High School, where he is now enrolled in order to receive hospital-based instruction. A few staff here have offered to help him with Chemistry and Algebra if he gets stuck, and a friend of ours was a history major, so we also have US History covered.
Tyler has done so well during this first course of chemo. He still has his hair, although it is thinning. He has bleeding sores in his mouth, as expected, but so far they are only uncomfortable, not painful. His skin is very sensitive, making PICC line bandage changes very miserable. His increased sense of smell bothers him, and he does have some strange tastes. Other than one night of vomiting and some nausea, he’s well controlled on Zofran (nausea medication). He gets platelets and blood transfusions, which work well when his low counts make him bleed and make him dizzy.
We feel so blessed! The doctors assure us the toxicity will continue to build up in his system, and he will indeed get much sicker. I believe the many prayers being lifted up for Tyler are making the difference!
Spending so much time in bed is affecting Tyler’s lungs, so he has a little device he breathes into that can strengthen them. Mostly he needs to get out of bed and walk as much as possible. This will help his lungs and keep his muscles from atrophying. So far, Ty is pretty resistant to leaving his room for walks.
Most have noticed he’s now wearing glasses, because he cannot wear contacts during chemo. But he also is no longer able to wear his retainers (having just gotten his braces off last April). Unfortunately, in just two weeks, his teeth are already shifting significantly. It’s hard to watch that happen after all those years in braces! A second round is definitely in his future once his treatment ends.
A few days ago we asked some questions, and the answers gave us increased hope. With a successful bone marrow transplant, Tyler’s chances of beating this disease (no relapses for two years) greatly increase to 50 – 60%. The doctor also explained that if all the things that can go wrong do go wrong (can’t knock out enough cancer cells in order to qualify for a bone marrow transplant, for instance), there are experimental treatments they’ll want to try. We didn’t realize this at first, and visualized them sending Tyler home saying they had done all they can if he doesn’t respond to the standard treatment.
Sometimes we get overwhelmed by how LONG this journey will stretch out. But we’re advised that this is a marathon, not a sprint.
We were hoping to have met with the transplant team by now, but discovered yesterday that the complete typing of Tyler’s bone marrow will take a while longer. They will then test Ron, Michelle (his half sister), and me, not for the purpose of a match, but for the purpose of further studying Tyler’s type. I also found out that if Tyler ends up getting my bone marrow (a half match), he will get my celiac disease and my allergies, which are part of my immune system. Ron also has some auto-immune stuff going on, so perhaps Ty will have to use a donor even if they decide to proceed with a half match rather than a full match. Again, they keep reminding us that this is 3-4 months down the road.
We still find ourselves at peace. Not to say that stabs of intense fear don’t often strike, and not that we aren’t already exhausted by this even two weeks in, but we are comforted that Tyler is bathed in the prayers of so many beautiful, caring people. Those we know keep telling us of stories of perfect strangers in places like California, Texas, Costa Rica and Tanzania, who are praying for our son and for our family. THANK each and everyone of you for your faithful prayers and for asking others to pray.