Drowning in Ice!

This is a quick side step from news about Tyler. :)

One of Tyler's medicines is delivered each week with a couple of reusable ice packs. At this point, we are almost drowning in ice and I don't have enough room for food. I would LOVE to give some of these ice packs away to anyone who wants to pick them up. Contact me if you are interested.

Thanks!

Mandy

Christmas Wishes

The attending physician at MD Anderson suspected that Tyler's fever and chills were most likely due to platelet reaction, rather than an infection since Tyler didn't have any signs of fever after at first night. Although they wanted to keep him on antibiotics just in case, they agreed to let us fly home late on December 24th. While we are ecstatic to be closer to our loved ones, I still have some very big concerns about Tyler's health. After getting two bags of platelets in the hospital yesterday, he still was bleeding in his mouth during the plane flight and all night long. His platelet count just doesn't seem to be bumping up much or holding at all. They will most likely have to move towards matched platelets, where a member of the community will be asked to donate specifically to Tyler, rather than using the pooled platelets from normal blood drives. The idea behind matching the platelets is that Ty's body will be more likely to accept everything in the bag, rather than just the few that match from a pooled bag.

On the Christmas front, we can hardly believe that it is! We got home around midnight PST last night, so we went straight to bed. I'm hoping that Tyler will feel up to celebrating Christmas next weekend. We might be more together by then. :)

We wish you all a wonderful holiday!

Mandy

Staying south

Unfortnuately, Tyler experienced some complications after his bone marrow aspiration yesterday and had to be admitted to the hospital here in Houston. As he was leaving the BMA, he had severe shivers and (although he was fine right at the end of the procedure) had a temperature that spiked up to 103 in a very short time. We spent the afternoon in the ER and then transferred to a bed on the 16th floor. The fever broke overnight, most likely in response to the antibiotics that they started him on, but we will probably be in Houston for at least a few extra days.


We are both upset about being stuck in Houston for Christmas, but we had planned on a very quiet Christmas anyways so this just makes sure that we abide by that.

His platelets were back down to 1 today, so they are giving him another transfusion now. Hopefully yesterdays platelet's were just eaten up by the fever yesterday and he will still be able to get by with transfusions every other day for a while longer.

Best wishes for a happy and healthy holiday to you and yours!

Globe trotting

We flew to Houston on Tuesday morning and the flight went better than Tyler thought it would. We were both very thankful that he didn't have much pain in his ears from the cabin pressure. He was worn out from all of the hiking he had to do in the airport (as well as the early alarm clock) and laid low for the rest of Tuesday.

We met with the doctors on Wednesday morning (starting at 7am CST!) and learned that Tyler's platelets were back down at 1. He's waiting to get a transfusion now, but the doctors are pretty much done with us. They offered him the choice of continuing on the ponatanib and Ty chose to continue for now. There really aren't any other good options, so we are kind of stuck with it.

It's a relief to know that Tyler will have a drug to take for at least another month, but the ponatnib really isn't maintaining ENOUGH control over the disease to be a final answer. Our doctor in Seattle thinks that Tyler's CML may be multilingual -- meaning that it communicates along more than one pathway in the DNA. They are researching other pathways, but that research isn't far enough along yet to be of great help. I hope that some new clinical trials open up soon though!


Tyler has gotten progressively worse with each hospitalization and is finding it very difficult to regain his strength after his most recent inpatient stay.

Scraping the bottom

Tyler continues to have extremely low blood counts because his marrow isn't healthy enough to make mature blood cells. He keeps turning out teenagers (blasts), but they just won't grow up and get a job!

Anyways... Tyler coordinated with SCCA to get a double dose of platelets on Monday in preparation for the trip to Houston on Tuesday. Unfortunately, when he woke up on Monday morning, he was spitting up blood. That is one of the signs of low platelets, so he immediately started calling SCCA to see if he could go in early for his transfusion. When he got his blood count back, he had a 1 for his platelet count. The normal range for platelets is 150-400, but Ty's counts have been below that for years. The doctors transfuse him when he gets below 25, just to avoid any unnecessary bleeding.

He ended up getting 3 bags of platelets on Monday because he had been way lower than expected. Thanks goodness for the Puget Sound Blood Bank and the many generous donors in our area! Tyler would not survive without your lifesaving donations. If you have not donated blood before, i urge you to try it once. It is a really easy process for almost everyone that qualifies. In fact, my mom jokes that it is like opening a tap in her arm! :)

Christmas in Houston

We heard from the Houston folks this week and they have (ever so kindly) invited us to join them in Houston later this month.  I think we'll be crazy flying around the country the week of the Christmas, but it is definitely worth it for Tyler's health.

His immune system has still not recovered, which should have happened by now if the medicine was working.  I am nervous that they will take him off the Ponatnib at this next visit, but we may not know until after the doctors review Tyler's health and his lab results.  Our doctor (Dr. Oehler) is attending a Hematology conference next week, so we hope to hear more from her on exciting new therapies that Tyler can try.

With his current poor health, he is not in great shape for anything else treatment wise.  Our focus is on getting him to eat more and exercise more over the next few weeks so that we can give him as many options as possible.  He continues to get transfusions of platelets every other day, but is getting through those okay.