Day 28 & Going Strong

Today is a day of getting things done. Errands, cleaning, organizing and preparing to be gone (back home to Spokane for a few days). Jim and Debbie arrive tonight - I'll show them all the ins and outs of Marks care and then I head back to Spokane tomorrow. I have several days of snydergraphics work and packing.... then Wednesday after school the boys and I head back to Seattle for the duration of our little adventure! I am so excited. I know it will be a lot of work to balance it all (Mark, boys, medical stuff, cleaning, cooking, work, school, appointments....etc.) but it will be worth the work to all be together again!!!

Mark is doing well. Today is 28 days post transplant. Late this week he started developing a slowly growing rash. Not itchy or otherwise bothersome - but still a rash. One skin biopsy later we find out that it is Skin GVHD (see below for more info). No need to be alarmed - normal for transplant patients, especially with cells from a mis-matched, unrelated donor - like Mark's. While we would hope for NO issues - this one is fine. If he has to have some type of GVHD then in his skin is the best option and a slow developing surface rash with no apparent side effects isn't too big of a deal. They could increase Mark's steroid intake (not desirable) to reduce the rash but the better option is to do PUVA. (see below for more details) It is a UVA light treatment that effects the cells in his skin - making them calm down and suppress them. (He takes oral pills and then lays in a machine much like a tanning bed). It should control the symptoms of skin GVHD and we can continue to taper Mark off the steroids. If things change. I'll let you know.

Keep praying for....
Marks skin to respond to treatment
The boys move to Seattle
My days of work ahead
Patience
Endurance
The next 62 days at least....

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Graft-versus-host disease or GVHD is a term used to describe a battle between the transplanted stem cells and the patient’s body. Acute GVHD may occur early when the bone marrow starts to engraft around two to four weeks after the transplant. Skin GVHD usually shows up as a rash anywhere on the skin surface but it is mostly seen on the hands, feet, abdomen and face. The skin initially looks sun-burnt. The rash may progress to other areas of the body and potentially become a blister-like rash.

GVHD is not always a negative development following a blood and bone marrow transplant. This is because the immune system that attacks the host causing GVHD is also known to attack cancer cells. Researchers have found that patients with GVHD generally have a lower risk of having a relapse of their cancer.

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PUVA refers to the interaction of long wavelength ultraviolet light (320-400 nm) with a pharmaceutical molecule of plant origin, psoralen, producing a type of "photochemotherapy." Psoralens (Mark takes a drug with them - orally) are a family of plant chemicals that are able to absorb light in the ultraviolet A (UVA) spectrum (320-400 nm). Once this absorption has occurred, these chemicals become activated and can react with biological molecules in a number of ways. Although human tissues are relatively resistant to the effects of ultraviolet A light alone, this changes dramatically when psoralens are present in the skin tissue. The most obvious change is a marked increase in ultraviolet sensitivity manifested as burning of the skin (the equivalent of sunburn). It is hypothesized PUVA works by inhibiting the production of the basic genetic material, DNA, and/or by damaging receptors of skin cells (epidermal cells) and particular immune cells (T-lymphocytes).