Wednesday, September 02, 2015

Day 1

Be completely humble and gentle; be patient, bearing with one another in love. Ephesians 4:2

My God is working on my flexibility and patience. He knows that I have much room to grow in the area of not being in control and knowing exactly what is going on. The last 48 hours have been a base-level test for me :)

So 'today' started yesterday. We planned on a full day of pre-op appointments yesterday, culminating in her receiving platelets through an IV to get her numbers up prior to surgery, after which we would go home and enjoy one last sleep as a family under the same roof. However, around 5PM they told us that the blood bank did not have any of her type, so they were having to get some from elsewhere. This meant that she would have to be admitted to the hospital so they could administer the IV when the platelets arrived (likely early evening). Around 9PM they came and hooked her up to fluids since the platelets were still not there (coming from out of state). She fell asleep and slept as well as can be expected with the barrage of activity in and out of the room all night.

Somewhere around 5AM, the nurses came in and did more vitals and flushing of her IV, and then started her on her first round of platelets. They were able to push them in about 30 minutes; 15 minutes later they drew blood to test her levels. (If her levels were not high enough, we would have to do another round of platelets, but we did not have much - time before surgery or bagged platelets - to spare.) Her platelet numbers were high enough, so surgery was still on the schedule for the day. For some reason, they did come back an hour later and start to give more platelets, but then the bag started to leak, so they took it away. During that time, the nurse practitioner for the lumbar puncture visited us and assured us that her numbers were great and she wouldn't need any more platelets before surgery.

Surgery was scheduled for 11AM and they called us back just after that time. Unfortunately, it took another hour for the OR and surgeon to be ready, so Ruby had to hang tight a little longer. Once they took her back, the surgery took a little over an hour, and she was back to us about two hours later, snoring, snuggling, and with a tube coming out of her chest. (The surgery was to place her port/catheter. This is how she will receive most of her chemo and also how they will take blood for testing and administer fluids, as needed. While she was under they also performed a lumbar puncture/spinal tap. This was to pull some fluid from her spine to test for leukemia cells there and also to put the first dose of chemo for her spine and brain into her system.)

About an hour after Ruby got back to us, she woke up and returned to being Ruby quickly. She ate a TON and then an hour or so later started to fade again. This was a BIG day for her. At 5PM, chemo via IV was started. Around this time Ruby started to show some signs of pain when we moved around a little, but it helped to have all of her other IVs taken out (she had two others in place from earlier in the day). Ruby rallied until 7PM and then couldn't keep her eyes open another second.

We're in the deep end now. Somewhere around the beginning of the platelet appointment yesterday, this new world we would be living in started to lure me into the water. It's not all bad, but still scary if I let it be. My baby coming back to me with six tubes connected to her, including the tubes implanted in her chest, and the first round of chemo into her spine during surgery pulled us the rest of the way in.

I think part of the ominous feel of this part is the harsh reality that we are actively making her sick. Yesterday morning Ruby was running around, drinking her morning smoothie and getting into trouble all over the house. This last weekend, Ruby was digging in the garden and pushing herself on her bike in the driveway. She wasn't sick, she wasn't fatigued, she wasn't slowed down. The very potent drug that I am watching drip into her body while she sleeps will suck some of that life out of her as long as it's in her system. That is not an easy pill to swallow.

Good news came from the leukemia fellow we've seen most often during our journey. She came to visit us just before chemo started today. She said that since Ruby's level of leukemia cells in her bone marrow was low enough, she will not have to have the bone marrow biopsy normally planned for day 14 of this first treatment. (Typically that biopsy is done to determine if the leukemia is at a high enough level to warrant starting the second round of chemo early. Ruby's beginning level is already under that threshhold.)

We are continually showered with texts, phone calls, cards, prayers, meals, childcare for Eli & Maddux, posts on Facebook...the love is comforting and so appreciated. We are rich in community!

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