The Big Climb

It's not too late. You still have time to register for The Big Climb, a fundraiser for The Leukemia and Lymphoma Society in Seattle. On March 22nd, participants can choose to either run or walk up the stairs of the Columbia Center, the city's tallest skyscraper. The center has 69 flights of stairs (1,311 steps or 788 feet of vertical elevation). Participants can be as young as 8 and as old as you'd like. Give us a phone call if you plan to attend. We'd be happy to wait on the main floor and cheer you on.

Arnie has been completing his own personal big climb this week, overcoming a number of troublesome symptoms. Here's his status:
-TFFS: completely resolved
- Nausea: much better
- GI Discombobulation: much better overall but occasionally a problem
- Headaches: much, much better
- Fevers: resolved
- Chills: less frequent
- Fatigue: still a daily concern
We are learning to evaluate Arnie's recovery by looking week-to-week, rather than day-to-day. The medical team tells us his progress is very typical. This is reassuring.

When we wrote last, Arnie had started an antibiotic for a possible chest infection. He was also placed on respiratory isolation, to prevent him from spreading viruses or bacteria to other patients. Arnie had to wear a mask when he was at the SCCA clinic and we had to sit in special areas when we were waiting for appointments. By Thursday, all his test results were back. No viruses or bacteria were found and it is unlikely he had an infection after all. Arnie does have to practice taking big deep breaths during the day to keep the tiny airways at the base of his lungs well inflated. We are no longer in respiratory isolation but will finish the ten days of antibiotics prescribed.

Just when things were looking up, Arnie developed a red splotchy rash on his chest and shoulders. We were off to the clinic again. His rash appears to be early GVHD (graft versus host disease). A skin biopsy will tell us for sure.

Here is a description of GVHD from the SCCA information binder:
GVHD is a disease caused by certain immune cells from the donor that attack tissues and organs in the patient who has received a transplant. Acute GVHD can occur any time after engraftment but usually begins within the first 3-4 months after transplant. GVHD is often the major problem after bone marrow transplantation. It may affect the skin, liver, stomach and intestines and varies in severity. After transplant, you will take 2 or 3 different medications that suppress your new immune system to prevent acute GVHD. Despite taking these medicines 4 out of 5 patients with an unrelated donor develop GVHD and need additional treatment. The usual treatment for GVHD is prednisone. The goal is to control symptoms. The dose is then reduced (tapered) over weeks or months depending on your response.

Now Arnie has added prednisone to his truck-load of other medications. The prednisone gives him a better appetite and a boost in energy but upsets his stomach and disrupts his sleep. His rash looked better after 2 doses, so we are praying this is a sign of a long lasting response. Arnie was taking one pill per day when he arrived in Seattle and is curently on 15 different medications which totals 35 pills per day. He is finding the burden of all these pills a bit of a trial but is keeping up with few complaints.

Thanks for thinking of us. Hope you are all well.
Sending warm thoughts your way!
Arnie & Brenda