Tummy Trouble

Day 103

Hello everyone, it has been an eventful day today. First things first...I know everyone is waiting to find out exactly what is going on with the transplant so here is the latest. Officially MDA has called the cord bank(s?) to reserve Ann's cords.

The cords that they have chosen are two HLA 5/6 (5 out of 6) matches. They have been described as "big" though I don't know what that means relative to umbilical cords, I do know that larger cords are more likely to yield more stem cells. The more stem cells that are selected, the faster the engraftment of the new immune system. The faster the engraftment the less chance there is for random bugs to find there way into Ann's body and attack it. MDA is looking for approximately 3.5 x10(7) Cells/Kg of body weight. Again they feel like because Ann is small and the cords are "large" this will not be a problem.

We did find out that the Transplant Doctors and Ann's Leukemia Doctor feel like it will be beneficial for Ann to go through round 6 (which is short). The thinking is that the t(4;11) translocation is dangerous enough, and Ann has not suffered any major damage to her organs, or serious infections, that it would be wise to go ahead. Another factor is that the even rounds are mainly Cytarabine (aka ARA-C) which Ann has a pretty extreme reaction too (it blinded her in round 2). So they want to give the Cytarabine an extra chance to kill of any more lurking blast cells. This may also help to make the radiation given ahead of the CBT more effective, which would reduce any chance for a relapse after the transplant.

Timing wise the transplant looks like it will happen sometime in the Middle or Late Middle of May. Unfortunately we can't be more specific than that right now because there are too many variables still unknown.

On to the subject of the post. When we last left Ann she was having digestion problems. Well they got worse. The good news is that its not Splenomegaly. It it were her WBC counts would be off the charts again and they are not. In fact they are almost normal.

The bad news is that all the antibiotics and chemo have slowed down Ann's digestive system to a slow crawl. So she is FOS (full of Stool) which might sound funny, but it's pretty painful for her to even sit up or walk at a normal pace.

After seeing Dr. Thomas, Ann was placed on Renagel, Enulose, Senakot and industrial strength Milk of Magnesia. Plus to make sure she stays hydrated we had to again pick up one of those Gemstar portable pumps with a liter of Saline set to infuse over 24 hours.

The bag of saline and pump set up this time is so big that Ann has to wear it like a back-pack. As convenient as taking one of these home versus doing the infusion at MDA is, it presents a real risk to Ann's CVC.

The CVC is held in place with three sutures and the weight of the pack, pump and saline could easily rip it right out of her chest if it fell. So I will have to find a place to really secure it while she sleeps, and do so in such a way as to give her IV line enough slack so that she won't pull it out if she rolls over.

It has been a long day for both of us, so this is where I'm ending today's update.

Good night everybody.