It’s hard to believe the day Kiira is admitted has arrived. I feel like we’ve waited for this day for so long, and here we are. While it’s easy to get overwhelmed through this process, I am finding a peace that I can’t explain. We take one day at a time and deal with each thing as it comes–otherwise it would be far too overwhelming. This is the daily account of our experience during the days of chemo:
Day -7: Today was very low-key. They did vitals, we met nurses and doctors, got settled in and they even let us escape with Kiira for one last dinner together before hooking her up to an IV. The IV is necessary to get her a lot of fluid before starting chemo at 10am tomorrow since chemo can damage the bladder. Starting tomorrow, they’ll be watching the fluid intake and output every 2 hours, meaning diaper changes every 2 hours even through the night. She might also need a blood transfusion tomorrow, because her they’ve drawn so much blood over the last week and her hemoglobin is low. It will be necessary during the process anyway, so we expect multiple transfusions.
Kiira already flashes her infectious smile to all the nurses. She had fun playing on her bed, especially peek-a-boo, since we surrounded her bed with pillows for protection, and is now fast asleep. She really rolls with the punches and has no idea what’s happening, which is good in so many ways.
It was nice to ease into today, but I’m definitely ready to get the process started so we can start seeing results.
Day -6: Today Kiira started chemo. She got two different chemo meds, plus anti-nausea medication and a ton of fluid. With the constant checks of vitals and diaper changes every two hours, she hardly slept and was so tired and grumpy tonight. Jason stayed with her tonight and she fell asleep sitting up while waiting for the last vital check at 7:30pm. Other than that, she seems to be doing well.
Today was also the Turtle Derby Races, an annual fundraiser for the hospital. The girls visited Kiira and I got to take them down to do crafts, watch the turtles race, and win lots of prizes. It was a really good break from the hospital walls–I know, I know–I’ve only been there one day, but it was still a nice break smile emoticon
Just to clarify something, since I was asked–In order to have a bone marrow transplant, you must undergo chemo (5 days for Kiira) and radiation (1 day of total body irradiation) to suppress your own bone marrow. It is low doses for EB, compared to someone with leukemia, but still enough to make you sick, lose hair, etc. Once that is done, they give her the new bone marrow and hopefully it will make its home in Kiira. In the meantime, she will have no immune system, so we have to keep her isolated for about a month, but in a bubble for about a year. Kiira has RDEB, not cancer or anything like that, but still an extremely painful, debilitating condition. This treatment is experimental, but they’re seeing formation of collagen VII in past patients, resulting in less wounding and faster healing. We hope it will give Kiira a great quality of life compared to what she would endure without any treatment.
I felt God’s peace today, so thank you for your prayers.
On June 25th, Noah Coughlin, someone who runs across the country to raise awareness about rare diseases, ran for Kiira and EB. I always love getting EB awareness out there, and love people who dedicate their lives to helping others. Thank you Noah! Noah on the run
Day -5: Today was day 2 of chemo and a good day. We gave Kiira a full bath, which is required daily during chemo. I feel like a first time mom giving a newborn a bath–it’s so awkward trying to hold her and wash her and keep her skin from peeling off. But she loves bath time. It took us 2 hours to do bath and bandages, so we’ll be doing that for the next 5 days, but I’m really hoping most bandaging will be over in about 35 days!
Kiira was exhausted from yesterday and getting woken up every 2 hours for diaper changes, which created several accidents and skin injury. Thankfully, that’s over so she slept for 3-1/2 hours this afternoon. She is back to sleep now and hopefully will get more sleep tonight. She was in a good mood today, but we were told she might not feel too well tomorrow from the ATG chemo drug they’ll give her.
Care Partners brought us a basket of goodies today. They provide volunteer services so they can sit with Kiira if we need a break, among other things. The amount of donations and volunteers at the hospital is inspiring. It really makes life a little easier while we are here.
Kira’s lab numbers were good–we are seeing the white blood cell counts drop, which is what we want at this point.
One day closer!
Day -4: Kiira has been doing great, but we worried about ATG, which she received today, because we’ve been warned by doctors and parents that this one makes you sick. We had a nice morning and did the bath/bandage routine. Sometimes it amazes me how Kiira can lay there for so long while we sing silly songs, make funny noises, and shake toys at her. But this is the life she knows.
I left the hospital this afternoon while she slept through ATG, an 8-hour process. They gave her Tylenol, Ibuprofen and Benadryl to alleviate effects of ATG. Jason stayed with her while I took my other daughters to see Inside Out. It’s funny how guilty I felt leaving Kiira to spend time with them, even though they need me too. The movie was about a little girl who moves from Minnesota to Ca and the emotions she feels about doing so. Quite fitting for our family! I loved the lesson about sadness being a valid emotion that we shouldn’t shove in the corner. While I don’t sit around and cry everyday anymore, there’s still sadness about the life-change we faced when we had Kiira and ever since. However, in the midst of that sadness, we feel the love and kindness of family, friends and strangers. The prayers are like a warm embrace, that covers our sadness with joy.
Please continue to pray for us, and especially Kiira. She did break out in a rash or hives from ATG. Supposedly they’ll go down in a couple of hours, but for now we are seeing it spread. It’s one of the least concerning reactions to the drug and doesn’t seem to bother her, but we hope things don’t get worse.
Thank you for keeping us in your prayers!
Day -3: Only 1 day of chemo left! I can’t wait! So the rash did go away today but when Kiira got today’s dose of ATG, it came back so they slowed it down and gave more Benadryl. Last night she also had a fever, but the culture came back negative, so it was most likely an ATG reaction, not infection.
Today she was pretty happy and has some PT time again to practice crawling and standing. She loves pulling herself up on her knees at the edge of the crib too. After a long nap, she wouldn’t eat, so I fed her through the gtube but she threw up some of it and wouldn’t eat for the rest of the afternoon/night. When she went to bed, I put a little in her tube and will do a little more later to see how she tolerates it. If she can’t get enough milk, she’ll end up in TPN, nutrition through an IV.
One day at a time and we face things as they come.
Day -2: Chemo is done!! Kiira didn’t get any hives or fevers today, so that’s good. However, she is retaining too much water, resulting in too much weight gain and general puffiness. Just before we were told this, we were talking about her face looking more round and swollen and she’s gained 1/2 a lb in 2 weeks. So, they gave her meds to make her pee more and Jason is on shift tonight to deal with lots of diapers and wet clothes–lucky guy! She is still sleepy a lot, but when she is up she is happy and loved playing with a toy stethoscope that a nurse gave her since she always grabs the real one. We’ve also been feeding her 2oz through the tube every hour since she showed no interest in eating and to make sure her tummy would tolerate it, but thankfully tonight she took a bottle again and we hope that continues.
Her big wounds on her elbows, underarm, and thigh are finally healing so we can wrap a little less, but bath and bandages still takes around 2 hours. There’s a song we always make up to the tune of frere jacques (thanks to Aunt Kiki for that tune during bandage changes), and I believe Kiira not only “dances” to the beat, but today sang “ba ba ba ba, ba ba ba” to the tune. It was crazy! It’s the little things smile emoticon
So tomorrow is total body irradiation. It sounds scary and it kind of is, but she’ll be sedated and we can’t be with her, so I’m leaving it to God to protect her little body. It’s 300 RADS, compared to about 1200 that leukemia patients receive, but still enough to possibly cause issues down the road. It all starts at 8:00am, so please pray with us that it kills what it needs to and nothing more!
I’ve been in “heal Kiira” mode that I haven’t thought much about home, but the last couple of days I’ve thought more about what I’m missing out on, and even had a dream that I took a picture of a lake and said “I should be here instead of at the hospital”. I know it’s a season in our life, but like my 5 year old told me, I too miss California and our friends and family.
Day -1: Kiira is sleeping peacefully after her morning of sedation, radiation, and bandage changes. She is such a trooper! The rest of the day should be uneventful, which is a nice change.
Her new blood/stem cells should be on a plane from Europe by now. We don’t know what time her BMT will be tomorrow, but probably in the afternoon. I can’t believe day 0 is nearly here! I feel the hope of a new life for our sweet baby girl.
