Day 16 - Punchin' the Time Clock

Sometimes Tyler and I talk about how fighting cancer is a full time job. Tyler works every day to eat and exercise and sleep enough for his body to heal. It's definitely a lot for him to worry about, especially if our schedule is disrupted.

Today was one of those days that felt a bit like work. We had our first appointment at SCCA at 9:15 this morning and didn't leave until just after 5pm. There is cause for celebration after today's visit, however.

After our lab appointment we had clinic with our team nurse and team doctor. They schedule these once a week to keep tabs on Tyler and make sure things are still going well. Our nurse, Jackie, checked Tyler's vitals when we first got there. When our doctor, Peter, got there he asked if Jackie had told us the good news. Jackie hadn't said anything about good news, so they got my curiosity up.

Still we had to ask what was up. It turns out that Tyler is doing SO well that they are stopping the IV antibiotic and switching the Tacrolimus to pill form. We were going into the clinic for daily infusions for those two items, which meant at least a few hours there every day. With this schedule change, we think most of our days will be lab draws, once a week clinics, and physical therapy appointments.

In addition, they will be stopping the Filgrastim shots either today or tomorrow. They've warned us that the blood counts will probably drop a little bit once they stop giving Tyler that booster shot, but we can live with that (especially since the shots are painful to get).

So... Are you ready to hear Tyler's blood counts from today?

WBC: 2.11 thousand (normal 4-10)
ANC: 1.79 thousand (normal > 1.0)
HCT: 26 % (normal 37-52%) --> We got red blood transfusions today
PLT: 17 (normal 150-400)

His hematocrit (HCT) was 26% yesterday, so I was pleased to see that had held steady. And his Platelets (PLT) got a good bump from the platelet transfusion yesterday.

Day 4 -- In a Drug Haze

It seemed like Day 3 might never end, with blood products and drugs running long into the night. But, here we are on Day 4 post transplant. Tyler's throat hurt a little bit more today, but we see no signs of the fever and the coughing has essentially disappeared.

One of the side effects from his chemo yesterday are long bouts of violent hiccups. He had something similar with his cranial spinal radiation, but seems to be suffering through these bouts even longer.

Today, they started Tyler on his graft versus host disease (GVHD) drugs. GVHD is a condition where the transplanted cells (graft) attack the patient's organs (host). It often begins as a rash (as your skin is the largest organ you have), but can lead to even more serious complications. Acute GVHD occurs within the first 100 days post transplant, while chronic GVHD appears more slowly than that.

GVHD is more likely if the donor was unrelated to the patient or if there is a tissue mismatch between the patient and the donor. In Tyler's case, his dad is only half match (think back to High School Biology and genetics training -- half of the genetic material is from the dad and half from the mom) so it is likely he will experience some GVHD. In fact, some GVHD is good and is termed the Graft versus Leukemia effect. This recognition of the leukemia cells as unhealthy or foreign can reduce the rate of relapse, as the transplanted marrow and it's blood can kill off any leukemia that might be hiding in the patient.

Tyler's protocol called for the introduction of tacrolimus and mycophenolate mofetil today to combat the possible GVHD. He will likely continue to take those until 6 months post transplant.

Another new medicine today was Filgrastim. This injection actually stimulates the growth of neutrophils (a kind of white blood cell) in the body. Its goal is to help Tyler's new immune system grow as quickly as it can. He will likely continue to receive this injection until his counts have recovered.

We hope that Tyler does indeed continue to grow some new blood and new white cells. He got transfusions today and the last two days before that, so I am hoping that he can have a day off tomorrow. There are so many extra vitals checks with transfusions that it fills up the day a bit. With tomorrow being Sunday and Tyler (hopefully being filled up with blood) off from transfusions, we are hoping to watch the Superbowl in peace and quiet.