The Eyes Have It

Tyler has been struggling a bit over this weekend because his eyes have been acting up. It really started getting bad on Friday and increased over the weekend. Tyler actually cancelled several of his weekend activities because his eyes were hurting and he didn't want to make them worse.

His right eye was even more red than normal and seemed to be oozing a little bit on Saturday. On Sunday and Monday, his eyes actually crusted shut as he slept overnight and continued to ooze all day long. We were worried because he has had eye sensitivity from the lack of tears (which is most likely mild Graft vs Host Disease) and this new symptom seemed to coincide with a new reduction in his tacrolimus (the immunosuppressant drug). He's been reducing one of his two daily doses every couple of weeks or so. He is on .5 mg in the morning and evening this week, then .5 mg in the morning and 0 in the evening next week, and then he is DONE!!! This means we are rapidly approaching our important 6 month mark.

If Tyler can get completely off of the immunosuppressant, he is able to increase the number of activities that he can participate in. He can go swimming again, have plants in the home, go golfing, and attend sporting events again. He still can't do any gardening or pet exotic animals, but it is exciting that he is able to take the next step back towards health.

We called the doctor's office first thing on Monday morning and they prescribed antibiotic eye drops, which seem to be helping. We see Dr McGee on Wednesday afternoon and will hopefully get more information then.

Day 91 - Nine Days to Go!

It feels like smooth sailing to us these days. We had a great weekend, with my non-stop eating machine (Tyler) keeping me in the kitchen much of the time. I'm not complaining at all. It's a treat to be able to cook for him and have him actually enjoy eating. I think he probably ate 6 full meals each day over the weekend.

We have talked about how refreshing it is that he is actually hungry again and has cravings for different things. Added to that, Ty has had a release from some of his diet retrictions which have allowed us to eat some of our favorite foods again.

With only 9 days to go at the SCCA, I am getting so excited to mark the passing of that milestone. This time since the transplant has been so much easier than the leadup to it. I'm actually thankful that we got much of the stress and agony done in the fall, although we are still suffering from some of those effects. His stomach issues have definitely improved and we are hopeful that his foot will be healing over the next several months.

His physical therapy is going well and they are starting to wean him off of the Tacrolimus, which is his immunosuppressant. Reducing this medication should allow his tremors to decrease and his neuropathy to decrease. I'm getting excited to see him moving around yet.

We have been charged to keep an eye out for rashes or intestinal issues which can be a sign of Graft Versus Host Disease (GVHD), but they have a schedule that will implement. For this week, he is taking 2.5mg in the morning and 2mg at night. The only reduction was the nighttime dose for this week.

Day 27 - Seeing a Golfing Theme

Tyler's father, Scott, chauffered Tyler around today to blood draw and some more golf.

First, the test results from today:

WBC: 2.38
HCT: 29
ANC: 1.6
PLT: 64

They tested the level of tacrolimus in his blood and determined that it was a little bit higher than desired, so they have lowered his dosage for the next few days. He'll have another level taken with the Thursday morning blood draw.

According to Tyler, he and Scott and Gump (Tyler's brother) had to squeeze a little bit of golfing in today as they were all in the same neighborhood at once. They headed to the Pitch and Putt at 128th and played through that course. It sounds like Tyler enjoyed himself, although I imagine he will be pretty sore tomorrow after all of that exercise. I haven't heard how each member of the trio did, but I imagine they were all enjoying the outing. They've had some great times golfing all over the state.

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 13 - Lucky Number 13!

Today's blood test showed the first glimmers of White Blood Cells! While our doctor cautioned us that the counts will probably fluctuate up and down for awhile, we are THRILLED to report that Tyler showed .16 WBC's today! AND he had .13 neutrophils mixed in there.

We had our first outpatient clinic, but it really took a backseat to the exciting test results we got. Tyler did get a platelet transfusion and some IV drugs, but it was a pretty quick day at the clinic. I'm hoping that these glimmers of WBC's mean that Tyler will start providing enough healthy blood to stop these transfusions.

They are still playing with the Tacrolimus level in Tyler's blood, but hope to get that settled over this week. Once they've established the correct dose for Tyler, they will probably switch him to the pill form of the drug to cut down on the number of scheduled IV's needed.

Hooray for the great test results today!!

Day 11 - Date Night

We had a pretty low key day today. Tyler's uncle, Don, surprised us by stopping by to say hi. Tyler's mom, Andrea, also came to visit this afternoon, so we had some fun entertaining.

They've changed Tyler's schedule here, as he is doing so well that he needs less support. He gets about 1 liter of hydration in the morning, but it only runs for about 4 hours. He gets one IV drug and might get some blood transfusions, but those can typically be run at the same time as the hydration. This means that we spend the majority of the day and night unhooked. It's significantly easier to get out for walks, move around the room, and pretend life is normal when you aren't tethered to an IV pole.

This evening, we got caught up in watching a few of the movies on TV. Tyler hadn't seen Apollo 13 and I haven't seen it in a long time, so we sat back to enjoy a movie night together.

We appear to be on track for a departure tomorrow, but we're reluctant to hold our breath this time. Tyler's Tacrolimus level was still at 3 today, so I am concerned that may delay our departure by a few days. They seem to want to bump that number up before they release us. We still stand a chance though, as the attending physicians rotate off duty around the 7th of each month, giving us a new Outpatient Attending to approve or deny our departure.