Devastating News about Peter!

From Jessica Togasaki:

Hello, friends and family. It has been a long time since my last update; it's been an eventful four months. I started this update weeks ago, but it's been a rough time with lots of changes.

I left off telling you with Peter and caregivers comfortably ensconced in the Mountain View apartment. The treatment plan was for him to go to the clinic several times a week, where they would check his numbers, infuse vitamins and fluids, and generally guide his recovery. His low-microbial diet (no fresh veggies, no outside food, no dairy for a few months) continued but his appetite was more than healthy - many midnight bowls of Malt-O-Meal and happy biscuit breakfasts to follow. Mom, Daddy, Alekist and I spent a quiet Christmas and New Years together - and couldn't have wished for a better one. After all this activity, a peaceful day with a simple meal together was all we needed. We settled into a routine with Mom, Daddy and Alekist working part-time and me getting down on weekends and spelling them whenever illness cropped up. Friends came to visit, Peter rocked his special pink mask on fun field trips to Guitar Center and the Western Store, and slowly got stronger.

90 days after transplant, in early February, Peter got a bone marrow biopsy. We got half the results back a few days later, and were thrilled to hear that there were no leukemic cells in his marrow. Woohoo! His doctors congratulated us and told us we could move home. That was the day we had been looking towards for months, and we started merrily planning. A few days after the results, Peter had a seizure. Mom, Dad and Alekist were there, and while it was a terrifying and traumatic experience for them, they kept him safe, called 911 and helped him through it. A barrage of tests later, the most likely culprit was a high level of one of his immunosuppressants.

After a fairly dull and discouraging time in the hospital, Peter was allowed to come back to Mountain View. We heard further results from his biopsy (flow cytometry and genetic analysis) that showed 100% of the sampled cells were my genetic material. This is uncommon but highly desirable. The remission is complete. He had a ton of pain and nausea though, and feeling worse upon news of remission was disorienting and depressing. Mom and Dad got a bad case of the flu, I was submerged under choir events, Alekist continues to maintain her work and family obligations, driving 350 miles a week. But we all tried to focus on the very positive news - finding cancer would probably have been the ballgame. Now we just hope his new immune system will kill any emergent cancers.

A week or two later, Peter was hospitalized with a fever. He proved to have graft-versus-host disease, a common product of a bone marrow transplant. Essentially the new immune system (the graft) attacks the body (the host) as though it's an infection. In terms of the cancer, this can be a good thing - we WANT the immune system to attack any cancer that crops up, especially with an aggressive and tenacious cancer like Peter's. His first encounter with GVHD came on Day 40, with a skin rash. 5 days of hospitalization took care of that and he was able to get out fairly simply and quickly. You treat GVHD by suppressing the immune system, which leaves the patient vulnerable to infection. It's a delicate balancing of medication that takes time to get right. It can also be lethal. They do see cases where remission is acheived, but the cure kills the patient.

Peter has now been in the hospital five weeks with what has developed into a very serious case of GVHD. He's been taking one small step forward, one large step back. His skin has broken out in a painful and itchy rash, and at it's worst would slough off with a little pressure. Any open wound is a dangerous thing when you are immuno-suppressed. It's important to keep clean, but bathing is hideously painful. He has a tear in one cornea, and had a bewildering number of eye drops to administer - an infection in the eye can get problematic fast. His liver numbers have been poor and his kidneys are having a rough time. His gastrointestinal tract has been horribly painful, with cramping, diarrhea, nausea and vomiting. That has not improved much over his time in the hospital. He is back on liquid nutrition and is only allowed small rations of ice chips - even drinking water provokes awful cramps and vomiting.

It's a hard time for Mom, Dad, Alekist, and me. Long hours at the hospital, the heartache of seeing him deeply depressed or in agonizing pain, and constantly feeling like we are in crisis - they all take their toll. We have been searching for a new apartment, as Peter's insurance doesn't cover rent when he's in the hospital and Oakwood is very pricey. We have been trying to make some long term plans, adjust our thinking away from waiting for him to come home and towards a lifestyle of working with a severely ill hospitalized patient.

At this point I must report that Peter is in very serious shape. Last week his doctors told us that his GVHD was quite serious and that he would likely require 2-6 months of hospitalizaiton. This week they tell us that they are concerned that he's not improving. Recently we can see that his skin is starting to improve, but he is confused, in terrible pain, and his gut is no better. The past few days he has become unresponsive, only opening his eyes when we call his name. It's not going well - something needs to go right soon. Currently he is having trouble breathing - if they cannot reduce the liquid on his lungs, they may move him to the Intensive Care Unit as soon as this afternoon. The doctors have warned us that a transfer to the ICU is often a one-way ticket. However, Alekist tells us that she's worked with transplant patients that have bounced back, who had several of their organs fail and are now okay. Peter's odds were never good, but he's fighting the good fight and so are we.

We deeply appreciate all the support from our friends and family. Donate to Peter at paypal@wrenchscience.com