Day +16 Trying to Dodge Bullets

Another transplant mom recently used the following analogy while providing an update on her daughter's recovery after a second bone marrow transplant:

"I picture each BMT patient running down a battlefield dodging bullets the whole way. The bullets are liver failure, kidney failure, lung failure, heart damage, infection, bleeding, graft vs host, viruses, etc etc.  Some dodge every one, some get hit by many bullets but make it out the other side, and some get hit by just one and are not so lucky." - Connie Lee*

We had good news yesterday morning with the first signs that Ryan's new bone marrow is starting to engraft. This morning's neutrophil count was also impressive - it had more than doubled overnight.

With these first counts came an extremely itchy rash, fever, nausea, and pain in Ryan's legs, arms, and abdomen. All of those symptoms got worse last night, and by this morning, Ryan couldn't stand up for more than a few seconds due to the pain in his legs. This evening, the transplant team decided to start high dose steroids to combat Acute Graft Verses Host Disease (aGVHD).

GVHD results from an immune reaction after a bone marrow transplant. Immune cells in the bone marrow from the donor (the graft) recognize body tissues in the patient or host as “foreign.” Ryan is the foreign "host".

The resulting immune response is similar to the reaction against an infection. Most transplant patients have some GVHD at some point. GVHD can vary in severity, and different parts of the body can be affected. In severe cases, uncontrolled GVHD can be fatal.

There are two types of GVHD - acute (aGVHD) and chronic (cGVHD). Acute and chronic GVHD are caused by different mechanisms within the immune system and respond differently to treatment.

Acute GVHD usually begins during the first 100 days after a transplant, although it can begin later.  It affects the skin, stomach, intestines and liver.

Chronic GVHD usually begins more than 100 days after a transplant. It can affect the same organs that are affected by acute GVHD and also can affect connective tissue in the skin and joints, the mouth, esophagus and lungs, the glands that make saliva, and the glands that make tears (and for women, the vagina).

Here is my simplified explanation of where we are at:

Ryan's donor marrow graft is starting to come in strong and is pumping out cells that realize they are in a foreign host (Ryan), so they are attacking him. The steroids he started tonight should tell the new immune cells to calm the hell down, which will buy some time for them to get used to their new environment and realize the new host is actually a pretty nice guy and not an enemy.

We are hoping and praying that this is only a temporary, acute, GVHD and not a precursor of more permanent things to come.

*Thanks Connie and Kya Lee for sharing Kya's story in such a public manner to help spread awareness of Aplastic Anemia and Bone Marrow Transplantation.