Dear Friends and Family...
Rachel has been out of the hospital for over two weeks. Since her dismissal three Fridays ago we've been to four "clinic days" at Children's Mercy Hospital.
The bone marrow kids who are not staying on the ward come to the hospital to clinics, twice a week (Tuesday and Friday are bone marrow clinic days), once a week, or even less often, depending on how they're doing and how far along they are from their bone marrow. A clinic day usually consists of a few hours in another part of the hospital from the ward doing tests, taking special I.V. medicines, having a check-up, blood labs, etc. In short it's like cramming into a morning or afternoon what is done over a longer period of time if one is staying on the ward.
I took Rachel her first three clinics... a deal I made with Diana as she'd stayed while Rachel was in the hospital an additional two days for me so I could get some extra things done at work. Hey! No problem... go to Kansas City, do a few things, come home.
The first visit was difficult. While Rachel was taking Benadryl through an I.V. (which knocks her out) to make taking another medication easier for her the medical folks decided she needed to have a sonogram to check out her liver. Rachel on I.V. Benadryl is not a pretty thing. She gets groggy, zonks out, and any attempt to awaken/rouse her brings forth a snarling ferret (she's too little to be a snarling tiger).
She hissed and snapped up to Radiology... the test was taken and we returned to clinic... with a message awaiting us that the brand new sonogram (it's first day on the job) had broken and data had been lost... could we come back to do the test again?
Snarl! hiss! snap!.... back up to Radiology. This time one of the clinic nurses came with me to make sure I didn't snarl at the radiology staff. Halfway through this test... the machine broke again.... fortunately right before it broke Rachel zonked out completely. They wheeled her on the gurney to another room to use an older machine that worked.
When she came to she didn't remember a thing... and sang in the van back home... alas, they gave me no Benadryl and I "white-knuckled" it all the way back to Topeka.
The second clinic day was an emotional roller coaster ride. Rachel's liver counts were too high... much too high. One medication was dropped and another was added. The doctor and nurse clinician were straightforward... nobody knew the cause. Rachel's eyes were also red from a form of conjunctivitis (pink eye) that I didn't understand at all. The medical folks were still discussing Graph Versus Host or allergic reaction to some medication... or both.
Added to all the indecision was the news we'd gotten the day before that three leukemia children we knew had died... and one who had Rachel's form of leukemia had relapsed with little hope of recovery... we were devastated by this news and the indecision of the doctors sucked me into a black hole of helplessness/depression/anger. I went home that Friday through rush hour traffic in Kansas City wondering what the heck everybody around me had to hurry for.
Rachel, exhausted from the day's tests, slept. I've said this before... the hardest thing for me during this thing has been the realization that medicine is not an "exact science." Disease/treatments differ for each person and sometimes the medical folks have to experiment to find out things.
Sometimes I feel like Rachel... a small kid who just doesn't understand why these grownups can't figure things out.
Diana spent the weekend telling me that as sad as the news of others was and as much as we grieved for those families Rachel was Rachel... not some other person. We couldn't give up on Rachel. She was still strong and we had to be strong too.
The third clinic day, Tuesday, went much better... I'd crawled out of the hole and the self-pity had gone its course (a little self pity every now and then is good for the soul... but only if you crawl out of the hole and get back in the light afterwards). The I.V. Benadryl was used much more sparingly this time. Rachel brought some videos of hers to watch. We were both more at ease. The news from the medical folks was that the liver counts had gone way down... and strangely enough they'd gone down without the medication that the doctor had called into our pharmacy. He'd decided to give it after Rachel and I left Friday... called our Topeka pharmacy with the order and left a message for us on our voice mail at home to go get it. The order never got filled and we never got the voice mail... but Rachel's liver counts went down anyway.... the medical folks couldn't explain this one either... we just chalked it up to the Great Healer who'd stepped in and helped out.
So Tuesday evening Rachel and I went home to Topeka feeling much better... got into town about 6:30pm only to be told by Diana that the doctor in K.C. had called her... Rachel's potassium count (there's always something!) was way too low according to the last test taken just before we left and we'd need to go to our local hospital for an I.V. dose of potassium fluids....
AIIIIIIIIHHHHHHHH!!!!
We'd had one bad experience with our local hospital in the emergency room back in September... very bad... a doctor who spoke to us of tests needed to protect the legal position of the hospital... rather than to protect the health of our child. There had been some angry words on my part and they'd backed down... we didn't want to go through that again.
But this time our home health nurse had set up a system at the hospital for us... no emergency room... she'd called ahead and we went to pediatrics. The IV was given... and at 2:30am we were home... dead tired but pleased with the local hospital's pediatric staff and Rachel's potassium count up.
One aside... Rachel started out her stay at the Topeka hospital in a frantic state. Then Kenny came down to stay with us for a while.... He hopped onto Rachel's bed and tickled, laughed with and teased her for an hour... and then he went home to do school work. Rachel was calmer and went to sleep soon after he left. The head pediatrics nurse came to Diana later, tears in her eyes, and told her that Kenny was one special brother who'd make a great dad. Diana said yes... as long as the "dad thing" was about 5-10 years away!
This past Friday was Diana's first visit to clinic with Rachel... all went well. Rachel's conjunctivitis had cleared and she was taken off the eye medication as well as the medication that necessitates Benadryl. She got Tylenol instead of Benadryl for this new medication... much easier and the snarling ferret stayed away.
Tonight... mask on... Rachel went to a play, Cinderella, at a local high school with me. She laughed, sat on my lap... a good time. We're grateful for these times... and for all of your continued thoughts, deeds and prayers.
Sorry this thing is so long!
later
Bill