OurBex Blog 2.0

After two months of inactivity on the blog, I’m certainly overdue to get the posting rhythm going again here and get everyone caught up.  Although you might think that meant all was quiet with Bex and her recovery from the allogeneic bone marrow transplant, it was actually due to just the opposite.  Between work ramping up quite a bit in the last several months, and Bex’ treatment continuing at a frantic pace, something had to give.  Now that we’re settling into our new (still crazy) rhythm, it’s time to get everyone caught up and get back into the blogging habit.

Last time I posted Bex was coming home from the hospital and the bone marrow transplant about a week earlier than expected, and everything was going smoothly.  Over the next several days Bex developed a severe stomach ache (and some other symptoms we’ll try to delicately get into later), and after five days her medical team was too concerned to let her stay home any longer.  She was re-admited to the hospital for pain control and for a variety of tests, and after an endoscopy procedure to check out her GI tract, she was diagnosed with Graft vs Host Disease (GVHD).

We had been warned about the possibility for GVHD before leaving the hospital for the first time, and the three main forms it can take.  Essentially GHVD is a situation where the donor immune system “wakes up” in the new host’s body (Bex in this case) and starts to attack what it think is a foreign body.  One of the easiest forms of GVHD to see is a skin rash that develops over the patient’s body.  By itself the rash isn’t that much of a concern, although it can certainly be uncomfortable.  Another form of GHVD is where the new immune system starts to attack the patient’s liver.  This isn’t something the patient can typically detect, but shows up in tests performed during the frequent blood work appointments that each patient attends.  Luckily Bex didn’t have either of these two forms of GVHD, but she did have the third.

The third form of GVHD typically seen is one that attacks the digestive system.  This results in inflammation throughout the entire digestive system, which also means her body has trouble absorbing any food or medicine that she would normally be able to take by mouth.  The main purpose of being admitted to the hospital was to make sure she was getting nutrition and medicine through her bloodstream (in an IV) since her stomach wasn’t able to process it with all the inflammation going on.

Overall, Bex was in the hospital another five weeks after being re-admitted for GVHD.  We would eventually learn that GHVD of the digestive tract is measured as one of four different stages, and that she had “stage four” GVHD in one area, and “stage three” GVHD everywhere else.  I must admit I thought about all of the symptoms of digestive GHVD over the weeks because I knew I would eventually try to describe it here, and this is the best way I could come up with to put it delicately: imagine the worst case of food poisoning you’ve ever heard of, now imagine it’s twice as bad, and now imagine it lasts five weeks instead of 24-72 hours.  Yes.  It’s no fun at all.

Bex was able to come home again in the beginning of September, and so far so good, she’s been able to stay home ever since.  We still head over to the infusion center three times per week for blood work (and most days we end up staying extra time for an infusion of potassium or magnesium since she hasn’t been able to absorb much from her food), but overall it’s great to have her home again and on the mend.

Now that most of the complications from the GHVD are getting under control, we can start to focus on evaluating the effect of Bex’ transplant on her Hodgkin’s Lymphoma.  One of the positive aspects of GVHD is that we should also expect some Graft vs Disease response as well.  Just like the new immune system is seeing Bex’ digestive tract as a threat and trying to fight it, we’re hopeful that it’s finding and eliminating all of the cancer cells in Bex’ body as well.  Within the next several weeks, Bex will receive another PET Scan so we can do a comparison to her pre-transplant scans, and see what her new immune system has been busy doing for the past several months.

So that’s the quick tour through the past two months.  :)  It’s been quite an adventure, and I’ll do my best not to let it go so long next time.  As we cover new ground I’ll do my best to go back and fill in a few of the blanks in the style you’ve become accustomed to, but I wanted to get everyone caught up with the major twists and turns.

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