Tuesday, January 6, 2015

Target discharge: Wednesday

Yes, you read that right. They are looking to discharge Ava this Wednesday! Of course, this is assuming no other developments/complications arise... (thanks for praying for that!)

The doctors had just shared those thoughts about discharge this morning when Ava had another extremely painful episode in the restroom later on. She was doubled over and crying out for mercy. This was alarming to everyone, as she seemed to be responding to the steroids, and they had only just begun her slow taper. If her GVHD was worsening with just a slight steroid taper, this would not be a good sign. While there are other options available to try and get the GVHD under control, it's better to have it responsive to first-line therapies. 

Thankfully, it was discovered that Ava's pain this morning was not due to GVHD, but to the fact that she has impacted stool. No one is glad that she is experiencing excruciating pain from severe constipation, but we'd rather deal with constipation than worsening GVHD. She was put on some laxatives, and they seem to be helping. It's a complex picture of so many different things: Ava is put on steroids to address the GVHD; the steroids also increase her appetite, (which in turn can contribute to weight gain) and cause her face to be swollen; the pain meds she is on can also cause constipation; even though she is eating more vegetables, her overall food intake has jumped, which may be why her body is slow to catch up with all the digestion, thus the constipation. While laxatives can help, they also have to watch that they don't overdo it and cause diarrhea, as this will also affect her body's cyclosporine absorption. Ultimately, the goal is to clear her body of impacted stool (then stop the laxatives), taper the steroids and hope that her GVHD doesn't worsen/come back as a result, and minimize Ava's pain. We want Ava to be able to eat, digest well, maintain consistent levels of cyclosporine, have minimal GVHD (no pain, no blood in the stool, no diarrhea, etc.) Thanks for praying.

Please pray for Ava's spirit as well. As Esther mentioned, it's been hard for Ava to deal with the physical changes in her body due to the medications: swollen face, weight gain, facial hair and mood changes (whether as a result of meds or because of the physical changes). The steroids are making her really hungry, so she wants to eat often. She's feeling discouraged about her appearance, so she's not terribly motivated to do much or be active (which may also contribute to constipation). This all feeds into her feeling down about herself and situation. It's a lot of stuff for a 6-yr-old to deal with. Thanks for continuing to pray for Ava's spirits to be lifted, for her to be encouraged and reminded that her beauty comes from within, not from outward appearance. We all know she is beautiful, inside and out! If you could send Ava a card to cheer her up, I'm sure she would love it! You can check out the Seattle Info page for the mailing address. Thanks!

When Mike & Esther first heard that they were "upgrading" Ava's GVHD to a grade 4, it was concerning as they understood grade 4 to be potentially fatal. As you know, GVHD is a concern because it means the graft is attacking the host body. Some level of GVHD is desired, as that would suggest that the newly transplanted cells are also attacking any remaining leukemia. But uncontrolled GVHD can be fatal, as that means the graft continues to attack the host unchecked. There is no known correlation between the level/grade of GVHD a person experiences and the degree to which cancer cells are being attacked. It simply cannot be known how much or how well the graft may be fighting cancer cells, only that we believe it is happening. While they reassessed Ava's GVHD to be a grade 4, the doctors said they believe it to be on the lower end (or milder) side of the grade 4...

The doctors said that Ava's GVHD is one of the more severe case they've seen with cord blood transplant. If Ava is able to be discharged on Wednesday, she'll also be able to follow-up with another doctor (on an outpatient basis) who is known to be a guru in GVHD, so they are glad for that.

So, GVHD is one thing to keep an eye on because it can be fatal. The other common cause of death is infection. As Ava is on steroids for her GVHD, the steroids are also an immunosuppressant, making her more susceptible to infection - another reason to taper the steroids as much as possible. And even if Ava was completely off steroids, they have to remain vigilant in minimizing her exposure to crowds and other potential germ pools. How long do they need to do this? Apparently for about a year.

We are thankful to have a date of discharge in sight! Thank you for following along and keeping these concerns in your prayers. You make up the bulk of our army of warriors. You are not taken for granted, nor unnoticed (even if your prayers may be unseen by man). Thank you!

1 comment:

Anonymous said...

Ava! "Big girl" God love you ! We love you ! Keep going! Trust and depend Him ever and ever! God with you !