Journal entry by Leslie Cavanaugh

Day +17

Alyssa’s big news, as of Tuesday, Day 14, is, she is 100% engrafted!! This is very exciting news and way earlier than expected.  Her blood counts continued to rise this week, but we had a little setback last night when she spiked a 103 fever.  Tylenol brought it down fairly quickly and the doctors were not concerned.  This does delay her Day Pass, as they want her fever free for at least 24 hours...so maybe on Sunday.  Her blood counts this morning dipped a little from the rise she had been getting from last 5 days.  Perfectly normal, we are told.  There will be ongoing fluctuations for many weeks to come and no reason for concern.  Alyssa has been able to leave room for PT since Wednesday and yesterday actually did 1.5 miles on the stationery bike.  Pretty impressive considering where she was at just a week ago! They are hoping to get her off her pain pump this afternoon. This is a big step.  She will still have the option of getting pain meds through her IV as needed, but getting off the pump means that she is not hooked up to monitors 24/7. Her IV nutrition (TPN) is also being reduced again today.  Which means she’s got to start taking in calories by mouth.  She is eating a little more each day, but still it’s a battle.  She doesn’t really have an appetite and nothing tastes the same anymore.  She is forcing herself to eat only because she knows that’s what she has to do to get out of here.

While Alyssa continues to improve, I want to stress that she still has a long road ahead of her for recovery.  I think it’s been a bit misleading to some, that as I’ve reported all this good news, that she’s almost back to normal. Bone Marrow transplant is a grueling procedure.  The conditioning process (total body irradiation and extremely high dose chemo) she went through prior to her transplant can literally be fatal to some people. The mucositis, fevers, diarrhea and GI issues land a lot of patients in ICU. The excellent physical shape she was in prior to transplant has played a major part in how she’s handling everything now. With that being said, it can take up to 1-2 years for her to be fully recovered.  It will take at least 6 months for her immune system to be fully functioning again.  In the meantime, she will remain suspectible to infections. Hospitalizations after discharge are very common, which is why we need to stay in Cincinnati until late May.  And they will ALWAYS remain vigilant regarding relapse of her cancer.  She will have her first post-transplant biopsy done right before she’s discharged to confirm there are no cancer cells.  Blood work will be done, probably several times a week at first, and ongoing biopsies will be spread out over the next year.  She will also need something called IVIG.  This is a drug that will help boost her immune system while she’s recovering.  The doctors decided earlier to do something called T cell depletion on Eric’s stem cells...that, combined with the ATG she took prior to transplant, has greatly reduced the odds that she will get something called Graft vs.Host disease (GVHD), which can be life threatening. This is when the body sees the new cells as invaders and attacks them, almost like an organ rejection.  She went through hell for the 3 days she was on ATG, so now that that is behind her, it’s going to pay off going forward.

I certainly don’t want to end this entry being all doom and gloom, because the reality is, she is doing everything right and this has been a textbook case for BMT. Her doctors are ecstatic with her progress. BUT I need to be realistic; she’s going to have bad days along with the good ones.  I know she feels the love and support from everyone.  We want to thank everyone for all the kind words, cards, gifts etc.  They are greatly appreciated.
 
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