Another pause in the postings here meant that, for the most part since last September, things have been going well. For sure there have been little complications. There was a quick hospitalization that started New Year’s Day and lasted about a week for a flare up of Graft vs. Host Disease (GVHD), there was a late night emergency room run when her medical team thought she might have a pulmonary embolism (she didn’t), but for the really important stuff we still have scan after scan showing absolutely no evidence of Hodgkin’s Lymphoma, which is exactly what we want at this stage.
Earlier this month Bex developed a cold, which is a normal part of the healing process and is expected to happen from time to time as her immune system rebuilds itself. Anyone with school age children can identify with the joys of those first several years, sending your kids off to the petri dish we call a classroom, and just waiting to see what kind of infection they’re going to bring home each week. The next several years will be similar for Bex as well. With a brand new immune system taking root in her body, she’ll have to catch everything she’s caught before, get re-vaccinated as if she were a newborn, and slowly build up all her immunities again.
During this time there are a few things in particular her medical team wants to watch out for. They perform tests for various strains of the flu, pneumonia, and virus’ that could cause it. When Bex’ cold was hanging on longer than expected, the usual battery of tests was run to ensure it was nothing worse. Back on February 10th, all of the tests came back negative and we continued with our weekly routine. Her cold seemed to improve for a little while, but came back last week and seemed to settle in her chest. Just to be on the safe side we ran all the tests again, only this time the results weren’t quite as expected.
At about 10pm Friday night we received a phone call from Bex’ oncologist, and sure enough Bex had tested positive for Respiratory Syncytial Virus (RSV). While RSV is pretty common throughout the general population (almost every child will get it before their 2nd or 3rd birthday), it’s important to get it under control quickly in patients with a reduced immune system. Just before midnight we received another phone call that a bed was ready at the hospital, and we started packing up to head in. By the time we got into the hospital and settled into her room it was around 1am on Saturday, and officially Bex’ birthday.
Bex’ medical team decided to try a relatively new (but very promising) treatment involving an inhaled powder form of ribavirin to combat the RSV. The treatment occurs from midnight to 6am, for six nights in a row, but requires a 24 hour notice before it starts so the pharmacy can make up the special preparation and get the right people in place to monitor each administration of the drug. Bex had her first treatment early this morning and everything went as planned. During treatment she wears a hair net and goggles for protection, and the medication flows in through a mask that covers her mouth and nose. Since the powdered medicine is fairly messy and sticky, she has to sit inside a special plastic “tent” for the six hours she’s receiving the medicine to keep it from spreading throughout her room. After each treatment is over, she immediately takes a shower and changes her clothes while a team comes in and wipes down everything in her room.
After the first treatment Bex says she’s feeling a little better, so with any luck the trend will continue over the next five treatments, and we can start planning for next year’s birthday to be way better than this one…
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