Planning Day

We overslept this morning but still made it to the hospital on time. It has been a very busy week with a lot of meetings and appointments and tests, daily infusions and planning. It was all hypothetical based on an assumption, hope and prayer that Micayah’s telomeres would be normal. 

Naomi started today with her nuclear medicine test to test kidney function. While that was happening we met with our nurse practitioner who had not yet seen the doctor today. Then the NP left and the Dr walked in and said “Micayah, your telomeres are NORMAL!” We all cheered and clapped. From that point on the day has FLOWN by as everything went into full throttle to make this happen sooner. 

The amount of people working for her is nothing short of amazing. She has two nurses, the doctor, the nurse practitioner, the psychologist, hospital case manager, hospital BMT coordinator, insurance case manager, imaging department for CT, kidney and pulmonary tests, and her brother. Aaron and I also sat in on a telecom today with her team to review chemo protocol and confirm everything. I also signed a bunch of paperwork today. (Aaron is dealing with his own issues at home working full time and being the lone parent to 5 children while the electricity was turned off for repairs and the sprinkler is flooding the side of the house because there is a leak under a sidewalk. No rest for the weary there.)

All of Micayah and Naomi’s evaluations will be finished tomorrow. She will be free over the weekend (as long as we maintain health). Then the plan is to admit Naomi Monday when she will have surgery to get a new line. The ultrasound of her arms and neck was done Wednesday and revealed very small veins. So she will need to have a chest double lumen put in again. It wasn’t our first preference but is essential. Her veins in her arms are just too small for a double lumen. 

Naomi’s treatment will likely begin Tuesday and consist of 6 days of chemo (-7, -6, -5, -4, -3, and -2). She will have one resting day to detox from chemo (-1) and Micayah will have surgery on that resting day. Then on Day 0 she receives Micayah’s cells. 

Her chemo load will be heavier this time with significantly more cytoxan than her first transplant (3 times more) and she will have campath this time instead of ATG (since ATG hasn’t worked for her twice before). She will most certainly lose her hair, be on a lot of antinausea meds and has the potential for more side effects than the first transplant. 

It has been a lot for us to process in one day. Every person here has been wonderful, supportive, patient and just truly compassionate to her even through her moments of having difficulty handling how fast this is all moving. Naomi was having a hard time accepting that she would need to do a contrast drink for her CT scan. So, the Dr allowed her to forgo the stomach CT and just do sinuses and chest and said no contrast needed which meant no fasting needed which meant that we could finish it today and not delay. 

After her CT is complete this afternoon (we are here now and waiting for insurance authorization), our plan is to go back to the RMH and REST. Micayah and Naomi are enjoying watching Lord of the Rings. I plan to cast on some yarn and put up my feet. It has been an overwhelming day and we need some R&R. It is also this cold outside today:

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