Update 11- The Bad Days

I guess my previous post was a bit early to share my Phoenix Rising picture, as she hadn't descended yet. After the transplant, they told us Days +5 thru +14 were likely to be the worst. 

It was just the two of us here as the bad days fell upon her. It's sort of a blur now, and I usually try to be more eloquent- but finding words is hard at the moment, so I'll do my best.
Every morning a team of doctorish people come in and ask about any new symptoms. They know the adverse effects of transplant and have plans in place should anything arise. So even though many of these things were very difficult to go through, they were all within the real of what was expected.

She's been connected to an IV pole since we became inpatient, and is considered a fall risk, so she needs someone at her side if she gets up from bed. They started 2 days of post-transplant chemo the day Hava and Michael went home. One of meds has some sort of toxin in it that cannot sit in your bladder or it will "poison" you, so she was given an additional med to make her pee it out. For 48 hours she went to the bathroom every 20-90 minutes, even through the night. We were very sleep deprived.

This round of chemo used a different drug than the first round. This chemo attacks fast growing cells. The slow growing donor cells are the ones that build the new immune system (and aren't affected by round 2 chemo). The donor cells that can lead to graft vs host are fast growing, so the goal is to wipe them out. However, the cells that line your entire digestive/GI tract are also fast growing. So her tract became severely inflamed. They call that mucositis.

My tiny girl started losing weight and developed a sore throat. We had to write down everything she was able to eat, which was tearfully not very much. Her sore throat became agonizing- where she couldn't swallow anything at all. Swallowing her own spit became intolerable, so they hooked up a special hand-held saliva vaccuum, which was her best friend through those days.

She was unable to eat or drink and so they put her on a "bagged meal," which is a bag of vitamins and minerals and lipids and such, put thru her central line (the 3 headed line we call Cerberus, which is attached to her neck) where it goes straight into her bloodstream, bypassing the stomach altogether. Most of her oral medications were switched to IV as well.

A non-irritating rash appeared across her shoulders, back, and stomach.

They're renovating our unit, so we moved rooms at some point.

Late one (intense) night, she developed a fever, which lasted a few days, so they came in to check her vitals every 2 hours, in addition to the nurse visits to change her various IV meds. She stopped getting out of bed for anything other than going to the bathroom. Her throat hurt so much she also stopped talking.

She got a little touch of pneumonia. She slept a lot.

She fell asleep with her pinky daintily resting on the side of her nose (not in it). So pretty, even though she felt like garbage.

Many days she had sudden bouts of nausea, which turned to late night vomitting- but without food in her stomach- and sometimes she vomited bile and blood (because of the insane irritation of the lining of her throat down to her stomach.) All I could do was hold her hand and do breathing exercises with her to calm her.

She received blood transfusions, and many bags of platelets.

They gave her a pain button to push- one day she pressed it 60 times...

There are so many meds on her IV pole. Each med has a little pump it's attached to, which beeps angrily any time there is air in the line, or the dosage runs low. I believe the IV pole sleeps during the day, so he can save his energy to beep all night long.

Somewhere in there, her hair began to fall out. The first day she noticed it, the little hairs were sticking out of her pillow and poking and itching her. Within two days, it was all out. She has a few sparse hairs remaining.

When she woke up on this particular morning, her remaining hair just so happened to form a heart.

Later the same day, her hair was very patchy. Pictures are posted with her permission.

This was the next evening. The blue curvy thing is the saliva vaccuum. 

At bedtime, I rub her feet down with lotion, and massage her hands and face. It's a nice way to wind down before the IV pole starts screaming, or nausea sets in.

Late one night, the AC broke. There are not any controls in our room. The temperature kept getting lower and lower. I had on my winter coat and Amri was bundled under numerous blankets. Eventually the maintenance guy came in with a temperature gauge. It was pretty late so we went to bed. At some point in the night it started warming up. It got warmer and warmer and warmer... until 2 nurses came in and decided it was a sauna and called maintenance again. The next morning, one of our nurses told us it was trying to climb to 100! So glad they caught it before it got there.

Around Day 14, her counts started to come back up, just slightly.

The donor cells are starting to make her immune system work again, so the cells are starting to repair the damage to her throat. She pressed her pain button half as many times. She's still sore but was able to stop using the spit vaccuum. She's starting trying a few bites of soft food (although chemo has altered her taste buds and she says a lot of things now taste like rocks.) She can now take assisted showers, and sit up in bed on her own.

Some kitties I drew while Amri worked on a project with her art therapist. We got a drawing book from a prize basket at the Inn.

She's seen by an art therapist and a recreational therapist, an occupational therapist and a physical therapist. She also has do breathing exercises. Being basically bedridden has caused some of her muscles to weaken quite a bit, including her lungs.

So many things these past weeks have reminded me of her babyhood- coaxing her to eat, giving her a sponge bath, brushing her teeth, putting lotion on her little body, watching her sigh in her sleep, holding her hand as she takes wobbly little steps, wiping her tears, calming her when she is frightened...

One night, as I struggled to sleep amidst the light pollution and random beeping and nurses continuously coming and going, I was thinking of Fievel and his sister, singing "Somewhere out there, beneath the pale moon light, some one's thinking of me, and loving me tonight... and even though I know how very far apart we are, it helps to think we might be wishing on the same bright star."

And in a coincidence I just now realized, we watched the Secret of NIMH with Michael the night he got here. Don Bluth for the win! But also- the Secret of NIMH! What a perfect movie to watch when you're staying at NIH.

Michael returned on Day +15. Amri was feeling dramatically better (not well, but so much better than before.) The physical therapist had the idea that maybe Amri could walk down and meet him in the lobby as a surprise, but his shuttle arrived a tad early he caught us right outside her room. Each day she takes a small walk around the hospital, with a wheelchair in tow for when she gets tired. As she is able to eat more, they will shift some of her IV meds back to pill form.

Cruising down the street in my six four...

She's feeling a little better with each day, despite weird side effects like dry sinuses, and irritated eyes in the evening. Her new goal is to eat enough to get off her IV meds, and regain enough muscle to no longer be a fall risk, so that she can get a day pass for an outing this coming Friday. I think her "rising" will be when she gets permission to spread her wings and fly out of the hospital (and be outpatient back at the Inn for a couple months before we get to come home. Outpatient could come next week, or closer to Day +30, depending on her counts.)

I want to thank those of you who reached out to check on us. It was really hard for me to find words on those bad days- we were living moment to moment. She was delighted to get mail, little pick-me-ups. Thank you to all the someones out there who are thinking of us and loving us and saying prayers.


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