Once again we are at LDS Hospital. Ray is in for a "tune up" as they told him. He came in Saturday, Aug 6. with painful, red, and swollen legs and feet, as well as a low-grade fever and an abnormal chest x-ray. Cellulitis and pneumonia were the admitting diagnoses. A bronchoscopy (lung scope) showed two different fungi were growing in the lungs. It's amazing what can happen when your immune system is a little under the weather.
Transplant Updates
Ray is now at day 216 post transplant. There have been a lot of ups and downs along the way. The two main obstacles are the cyclo-meglo virus (CMV) and graft vs host disease (GVHD). Both of these can cause major problems if left unchecked, so they do weekly blood tests to check for the CMV, and extensive questioning about his stomach symptoms at our weekly clinic visits to rule out GVHD flare ups. Sometimes the blood tests are positive so they start an additional IV medication until the tests are negative. Sometimes his stomach symptoms indicate a GVHD flare so they give him more steroids to calm things down. We don't seem to make it too many weeks without one or the other acting up.
The steroids suppress the immune system even further, so he's caught some unusual bugs over the last few month's as well--c diff and roto-virus to name a couple. He can't seem taper down to less than 40 mg of Prednisone daily (a normal dose being 5 mg daily) without having a GVHD flare, but they are trying to taper him down as fast as they can right now because of the lung infections. So we have our fingers crossed.
The steroids have also taken a toll on his muscles. His arms and legs almost seem to be skin and bones. The muscles that have taken the biggest toll are those he uses to stand up. It's amazing that a medication can cause such havoc. He exercises leg muscles several times a day to try and keep up his lower-body strength, but it's an uphill battle. They always remark at how much strength he has in his upper body though.
All-in-all, they say he still has a good chance of licking this cancer. They also say he is doing good for all the hurdles he's had to over come. They said he would probably realistically be receiving treatment of some sort for the next 7-8 years.
GVHD a Blessing?
In the last couple of weeks I've talked to a couple of people affected by multiple meyloma and bone marrow transplants. The one said she had had a MUD (matched, unrelated donor) transplant 6 years ago and had made friends with several others going through transplant at the same time. She said 5 of her friends never had any GVHD symptoms, and they have all passed on. She said she was still dealing with some of the side effects of GVHD but she was sure she still alive because of it.
Another lady said her sister had a bone marrow transplant and at first they were so grateful that she didn't have any GVHD symptoms. She now says she realizes they were praying for the wrong thing. She understands now that some GVHD is wanted because it can turn to GVM (graft vs meyloma) which is what eventually cures the cancer. Her sister passed away at 100 days.
Grateful For Life
So for now, we are counting our blessings. We are grateful that Ray's life has been extended. We are grateful for GVHD that can bring about a cure for his cancer. We are grateful for modern medicine and drugs that combat infection. We are grateful for kind and caring healthcare professionals who keep on top of tests and treatments. We are grateful for doctors who made it their passion to fight bone marrow cancer.
But most of all we are grateful for wonderful family, friends, and neighbors who never tire in providing care and concern as we continue on this journey. We send our love to you all. And we send an extra special love to our AMAZING children.
God bless you all.
