For a point of reference, it takes about 2 weeks for bone marrow transplants to graft, and about 4 weeks for cord blood transplants to graft... patients with early engrafting of cord blood may graft around 3 weeks. Ava isn't even at 2 weeks post-transplant!
The doctors continue to marvel at the way Ava seems to be taking the transplant so well. As previously mentioned, most patients are in so much pain right now that they can't even eat, or have difficulty with all the vomiting. Yesterday was the first day that Ava didn't really eat anything, but she still takes as many meds orally as she is able, which amazes the docs. Last night, Ava took 5 vials of meds orally! Most patients are only taking one med by mouth at this point due to the severe mucositis (that's the one medication that can't be given via IV), but Ava took 5 meds by mouth. (You go, girl!) Admittedly, she did feel pretty nauseous as a result (though no vomiting), and they all seem to taste pretty awful, but she's been pressing on like a true champ. She knows which med is the most palatable, and saves that one for last.
Certainly, there have been some tough times and Ava has had her share of tears. But in the grand scheme of things, we continue to recognize God's great gift of grace in these past weeks, which has allowed Ava to continue playing and being active when the "usual" is feeling pretty sick and not at all active or eating.
Now we will begin to see how much GVHD (graft-vs-host disease) Ava will experience. They expect (and want) to see at least some degree of GVHD, demonstrating that there is some fight/activity, but the desire is for very mild and short-lived symptoms. The docs warn that we may see some more GVHD in the gut in the days to come, evidenced by nausea/vomiting/diarrhea. Ava has already been experiencing some itchiness which may also be a result of GVHD.
It is not uncommon for the ANC levels to wax and wane. The desire is to see an upward trend, but it's also possible to see her ANC levels go up and down a bit. We will have to wait and see how everything plays out.
GVHD is a long-term battle; to fare well early on, or to make it past certain time markers isn't a guarantee that there won't be GVHD to battle down the line in different forms, even years out. There is acute GVHD as well as chronic GVHD, which is why Ava will still need to be very careful about being around lots of people. In fact, it is recommended that she not be in school for the first year post-transplant due to the risk of infection and being exposed to germs.
A big prayer request is Ava's itching. It's actually a little embarrassing to share about, but Ava's been having some severe, internal itching around her bottom. It could be a result of mucositis in her GI healing, or it could be GVHD in her gut. Either way, it's causing some severe discomfort... and because it's an internal itching, it can't be relieved by scratching or anything else, and has been so intense and unbearable that it has brought Ava to tears, leaving everyone feeling pretty helpless. The meds for C.diff started resolving her diarrhea, but the reappearance of looser stools may signify that Ava's showing some symptoms of GVHD in the gut. So, having to use the restroom is not an easy experience, and then having to deal with the itching on top of that. Thanks in advance for your prayers!
- early signs of ANC levels coming back up!
- Ava's remarkable experience post-transplant
- God's answers to so many of your faithful prayers; He is amazing!
- relief of itching
- for mild GVHD
- continued (and full) engraftment
- for utter and crushing defeat of any remaining cancer cells in Ava's body
Thank you so much! We are excited to rejoice in this good news with you all.