First off, I want to briefly say thank you to everyone who replied to my post yesterday, it was nice to hear from so many people with kind thoughst both in comments and via email. Your support is invaluable.
Last day of conditioning! Hard to believe, but we’ve now been through 22 days of pre-conditioning for Zoe’s Stem Cell Transplant. Today is Thiotepa, another suppressing drug that pushes her counts down in advance of the transplant itself. Thiotepa requires some unusual precautions because of the nature of how it is metabolized. Instead of primarily being passed through the digestive tract or urine, Thiotepa is largely secreted through sweat. This means Zoe becomes somewhat toxic for 24 hours after her 4 hour drip of the drug.
We’ll be bathing her every four hours to wash off the skin and be sure that none of the chemical remains on for too long. It will cause chemical burns, and appear similar to a sunburn I’m told. Zoe is not expected to feel particularly bad with this med, but she will require a lot of care to keep clean. We’ll be doing the sponge baths, and we have to remove her protective dressing from her surgery site because anything with abrasive or adhesive qualities can damage the skin while Thiotepa is being processed.
The worst part is that we are not supposed to be in contact with her skin. No kisses, no snuggling up that involves skin contact for 24 hours. For a baby, that’s hard, and it’s hard on us. I catch myself going in for a kiss or touch repeatedly and having to stop. We can hold her if we wear gowns, and we do, but it’s not quite the same.
In addition to the Thiotepa, Zoe has begun Tacrolimus, which is a replacement for cyclosporine with essentially the same uses but is better tolerated. She started Cellcept as well to assist with engraftment and protect against Graft Vs Host disease.
Yesterday Zoe wrapped up her Melphalan. I have to admit, I was fearing much worse than what she went through, but I’m told it is likely to continue to get worse from here on. We’ll be giving her pain meds regularly for the next couple of weeks at least until she grafts, in the meantime there will probably be some pain for her. Zoe had some bouts of discomfort that we treated with Fentanyl, and some flushes. We’re glad to be done with it.
Two more days and then we start down the road to recovery.
HLH Journal 
This is a drug Maya did not get. I wonder why? What is it supposed to do? Maya stopped her Cellsept on Thursday. We are now down to 4-5 meds in the morning from 7-8 and 3-4 at night from 5-6. She’s a fighter and will fly through this. Please know your in our hearts.
Love Shana, Kris & Maya
Zoe continues to amaze me at how well she is tolerating everything that she is going through. I know it has to be hard not able to kiss and love on her. Will continue to pray for you all!!
Love,
Gail
Thinking about you all so much. Tomorrow, day 1 of recovery :). I’m doing everything I can from Mebane: prayers, spells and incantations, clear intentions to the universe, offerings to the ancestors, whatever. Love, Mara
Recovery is on the horizon thank goodness. I know it’s hard to not have intimate contact with her but that is short lived. We are close to being rid of the meds and into recovery. Just another two days and we are in recovering mode thank GOD. This has been a long a difficult time and we hope the worst is over and hope Zoe is not in any discomfort.
Love to all, Nannie & John
@Shana,
My understanding is Thiotepa is useful in raising the chances of a succesful graft and preventing gvhd. I believe it’s usually only used in reduced intensity but I’m not positive about that.
I know that Duke uses that and Hydroxyurea with their protocol as additional meds, but that most institutions use the melphalan/campath/fludarabine only.
Hopefully it will do what it’s supposed to, neither med has been a problem for us so far other than the difficulty in managing the baths.