Tuesday, September 13, 2011
Here I am sitting by my sleepy girl and can't believe I haven't written on the blog yet. Today we are on day +13 of transplant which means it is 13 days after she got her stem cells. We were admitted on August 24th and started high dose chemo on the 25th. She first had 3 days of Thiotepa which is excreted out of your pores of your skin so you have to bath really well every 6 hours around the clock for 4 days straight. She was such a trooper (as always) and never complained once as we woke her at midnight and 6am to put her in the bathtub and scrub her from head to toe. After that she had 2 days of another drug- Melfalan and then she had a rest day before day zero- Stem cell day!!! Both chemos were high dose- they said 10-12 times stronger than anything she has received so far. Day zero Brynn once again amazed everyone as she got 2 bags of stem cells and you can feel nauseated or tightness in your throat but she sailed through it no problem. They told us her counts might not come up for 10-14 days after. She started getting mucousitis and was hooked up to a morphine pump to control the pain in her throat and mouth. On day +5 we were so excited when her WBC were 0.1! We told Dr. Lewis and he said I'm not jumping for joy yet- they could still go back down to 0. The next day they were 0.3 and the day after that 1.0!!!! I told him " I NOW want to see the happy dance!!!!" The very sad news what our friend Joey who had been battling for about 5 years went to ICU and passed away on Sunday night. That really shook us up and Brynn was very quiet and sad for days. She was getting cramps, nausea, and diarrhea after her counts started coming up. She was down which is not like her at all and started saying and asking hard questions that I didn't have answers for. Yesterday was Joey's funeral and Kevin had gone home to the other kids so I wasn't able to go- but we love their family and feel privileged to have known Joey. We are just taking things day by day now and the cramps and diarrhea are gone (including bloody stools which scared Brynn and us) She still is nauseated and it's a battle for her to try to eat and drink things and keep them down. She has done amazing they say and this is all normal- it takes a while for the appetite to return. We just take each day and try to eat a little more than the day before. Hopefully we will get to Ronald McDonald House later this week and then home in another week or so. We feel every ones prayers on Brynn's behalf and know that our Heavenly Father is very aware of her and her needs. We see little miracles happening every day!