The simplest way (although not the most accurate way) to describe it, is that GATA2 caused her bone marrow to malfunction and produce wacky, insufficient cells. So her bone marrow needed to be removed and replaced with properly functioning marrow that can produce healthy cells. First, they give chemotherapy to kick out the existing marrow and then they replace it with donor marrow. It takes a little while for the chemo to destroy the original marrow, and it takes some time for the donor marrow to understand its new surroundings. So Amri will be even more immunocompromised for the first 30 days of transplant, then need regular follow ups for the first several months, and continue to be checked on for at least 2 years.
They basically remove the old immune system, replace it with a new one, and then wait for the new immune system to take over. While the new immune system is loading, she is basically unprotected, like a new born baby. So she really is like a Phoenix descending and then rising from the ashes.
Some friends thought BMT required a surgery, like an organ transplant, but that is not the case (as you will see below). BMT patients also often have a significantly shorter waitlist, as donor's bodies will make more marrow. The issue with BMT is finding a donor that is a suitable match for the patient. If you would like to learn more about becoming a donor for someone else, go here: https://bethematch.org/
They called the events of the week before her transplant "preconditioning." On Day -7, Amri was given medications to help prepare her body for the next day's treatment. She received chemotherapy on days -6, -5, -4, and -3. Each day she was given a few oral medications, as well as meds through her central line (the IV in her neck), and, of course, the chemotherapy. Her chemotherapy consisted of a couple different bags of fluid given via central line, over the course of several hours.
How she felt--> Day -6 she felt fine, and she had a big appetite- eating more than she typically does. The rest of the days, she was really, really tired, lost her appetite, and started getting irritable- but mostly slept. She naturally has low blood pressure (they kept asking if she's really athletic- which she is not- because her blood pressure
is in that range.) The sedatives in her meds were making her blood pressure even lower, especially when she was sleeping, so it was important to make her get up every now and then to walk around...but walking was a major challenge, given how exhausted she was. This was all related to the meds they give to counteract the negative effects of the chemo.
Day -2 she was still crazy tired due to the sedatives still being in her system. That was the day they gave us a pass to take her back to the Childrens Inn for some family time. She was a fall risk and had to be in a wheelchair, but enjoyed the change of scenery. We watched Ernest Goes to Camp and ate dinner before she had to get back for her evening meds.
Day -1 she was still fairly tired. Her "counts" were really low, so she had to wear a mask when we left the room, but we took her up to the library inside the hospital. We borrowed some movies. The library has a big keyboard we will come back to check out, so she can practice her music for Spettacolo. Spettacolo is the annual Plano Drumline show. This will be her sixth and final year to perform, as she is a senior. It's more important to her to perform in her senior drum show than it is to walk in graduation, so Spettacolo is her goal while we are here. This year, Spettacolo falls on May 1 and 2... Days 99 and 100. Her transplant team is on her side and believe that this is a doable goal, depending on how her body reacts.
So each time she doesn't feel like sipping water or getting out of bed or taking a lap around her hospital wing, she will think of Spettacolo to push through.
Day 0
The day of her transplant (yesterday) she felt great. It was good to see her feel like herself again. She wore the special shirt her daddy had made as a birthday gift. The nurses were all very tickled by it.
She developed little red dots across her shoulders. They don't itch, so that's good. They think it might be a small reaction to one of the chemo drugs.
We spent the morning waiting for the bag of donor marrow cells to arrive. When they arrived, they hooked the bag up and began the slow drip.
When I thought about it as a bag of blood, it was a bit trippy to look at, but it's really a bag of marrow and cells, which was still weird, but was actually fascinating when her nurse said you can sometimes SEE the cells as they travel through the tube. This video is crytal clear on my phone- I hope it stays high resolution so you see the cells, too.
The recreational therapist came in and was able to get a therapy dog for a visit. To minimize cooties, Amri wore a mask and sat on our guest bed so Zilly could sit beside her. The trasplant tubes were tucked out of the way and they enjoyed a peaceful visit. Amri LOVES dogs.
It was projected to take 2 or 3 hours, but because the bag was so big and the drip so slow, it took 6. She felt fine the whole time. She passed the time by crocheting, talking, eating, and watching t.v.
Today (Day +1), Amri felt totally like herself. We went back to the hospital library (masked) so she could pick some new goodies. She and Hava worked on a make-your-own-makeup kit, and a gaggle of nurses burst in the door singing Happy Birthday and carrying a cake. Amri was baffled at first, thinking "My birthday was last week!" but then realized they were singing for her new immune system. Her head nurse from yesterday explained that they hadn't done the cake then because the cells took twice as long as expected. The art therapist also came in and the girls enjoyed a little painting.
In a couple days she will get 2 more days of lower dose chemotherapy to combat the chances of Graft vs Host. The graft refers to the donor cells, and the host refers to recipient's body. Sometimes, some of the graft cells see the new environment and decide to fight the new surroundings. This can result in some complications, but the post-transplant low dose of chemo has proven pretty successful at killing off the more "territorial" donor cells. This reduces the risks of graft vs host, but the low dose allows the rest of the donor cells to still get in there and create a healthy immune system. The more common GVH problems these days are skin issues.
Chemotherapy can also cause some physical problems, but the reason transplant patients have to remain under tight supervision for the first month, and in close proximity for several months after, is that the medical team knows what the adverse reactions are to all these things, and they have treatments to counteract any issues that could arise.
I hope I answered most of your questions about the process. I really appreciate everyone who has reached out to check on Amri. I am replying to messages as I get a few minutes here and there. We are really trying to make the most of the time we have while all 4 of us are together. Michael and Hava return home this weekend.
Many folks have asked what sort of goodies they could send Amri, so we've created a little Care Package list that we will update periodically. The link is in a tab above this post.
Also, Amri created an Instagram where she posts her own mini-updates. Here is the link if you want to give her a follow.
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The top image of Amri is my own edit of a beautiful image captured by Tanana Photo, and a phoenix from KissClipArt.
I did not find a link to the list or to her Insat?
ReplyDeleteHi Jamie! If the link in the post didn't work, they are both in the Important Stuff column on the left if you are viewing the webpage (from your phone or computer). I think if you are on the email list, it only shows you the one post and not the whole page.
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