"God gave us the gift of life; it is up to us to give ourselves the gift of living well." - Voltaire
Elise made it to 6 months post-transplant this past weekend (her "dianniversary" according to Urban Dictionary). She's almost fully transitioned back into life as it was pretransplant. She's going to school and doing very well (an almost seamless transition thanks to the help she received from Ann at NIH). She's dancing 1 day each week and probably going to ramp back up to 3 days a week. And she's participating in Girl Scouts where she received the Silver Award in early December.
So things are going well but there are a few little nagging things that have required some attention.
She caught a cold around Thanksgiving. It passed quickly but it led to a cough that became "productive". The cough also led to some pain that was difficult to diagnose. The Drs seemed to settle in on soreness from the act of coughing (I'm sure there's a medical term for it). The soreness led to less deep breathing and possibly "atypical" pneumonia (aka walking pneumonia). It was borderline but they gave her a 5-day Zpack and the cough cleared almost immediately.
Following the watery eyes from the cold, she developed a stye in one of her eyes. We weren't sure what it was because the eye became quite swollen. After a visit to the opthamologist it seemed to initially resolve with hot compresses and antibiotic ointment. But then it jumped to the opposite eye and we spent the next couple weeks chasing it around from eye to eye and lower eyelid to upper eyelid. It seemed to get under control with the combination of oral antibiotics and antibiotic eyedrops.
The last thing will present some longer-term challenges. Based on some blood tests, it appears Elise does have Premature Ovarian Insufficiency (POI) or Premature Ovarian Failure (POF). From what I've read this almost always happens to women who undergo a BMT and is caused by the conditioning regimen. It is generally treated with some form of hormone replacement therapy that can be short or long term depending on the individual's response. Simple, but we are still trying to get in to see an Endocrinologist. At this point the earliest appointment we've been able to establish is late February. But I'm on the hunt for an earlier one.
If there's one thing I'd have done differently given 20/20 hindsight, I would have made an appointment date with an reproductive endocrinologist at the same time we were making arrangements for follow-up care at CHLA. As I mention, it seems that POI/POF is a near 100% thing and endocrinologists are in high demand. Waiting too long is not a great idea because from what I've read POI/POF can also impact recovery of weight, height and hair as well as lead to issues such as reduced bone density. So if you're reading this and going through a BMT yourself (or your child) bring this up with your Drs.
While these things may seem like major issues, they really aren't impacting Elise too much. She hasn't complained too much about any of them and just keeps moving forward. We'l get them all resolved eventually and in a years time we'll likely have forgotten them (except for this pesky blog).
We're all looking forward to Christmas Eve tomorrow and then Christmas Day. We're following tradition and having breakfast at Becky's sister's. Then, after digesting and maybe an episode of "The Christmas Story", the family will come over to our house for dinner. We'll follow all that eating with a gift exchange. But I know we've already gotten the best gift possible.
