Day -9: Today Kiira went in the OR again to fix her central line. Everything went well and Kiira was so loopy afterward. They let us do her bandages while she was still sedated so that was nice. She was half asleep but wanted water so we sat her up to drink but she kept her eyes closed.
After she came back to normal, she wanted to help the nurse with cleaning her lines, just as she wants to help with bandages, put the pulse ox on her ear, or blood pressure cuff on her leg. She tried putting the thermometer in her tummy but we convinced her to take Buzz’s temp instead. Keeping her involved with her treatment is a good distraction so far.
Kiira started with ATG today, an immunotherapy drug that is similar to chemo but has more immediate side effects. So far she is doing well though–she slept through half of it. Tonight Jason is on shift, so I’m hoping they get a restful night of sleep.
It’s hard to believe we are really doing this again, but I’m relieved that, after all the planning and worry about getting to this point, we are finally here. Please pray for strength for all of us and success of this bone marrow transplant. Thank you!
Day -10: Today is admission day!
Day -11: Today was our last day all together until November. Kiira gets admitted tomorrow, so we spent the morning with Jenna, a happy, sweet girl who also has EB, and her wonderful mother, Adriana, and sister. They brought the girls some fun toys and treats and I think all the kids were happy to have someone to play with besides themselves. Thank you! Later, we took an outing and enjoyed the time together as a family.
Yesterday Kiira had an IVIG infusion to replace her low antibodies. It’s usually so much easier with the central line, but we discovered an issue with the line, so it has to get fixed or replaced in the OR early Monday morning, which means Kiira gets put under again. They are not delaying chemo though, so we will get her first dose at midnight tomorrow.
It’s surreal. I just try not to think about it–to think about how sick Kiira will be, or she’ll lose her hair again, or all the risks of a BMT. But we can’t do nothing. I shouldn’t have to decide between letting EB run its course or put Kiira through a BMT to help stop the progression, but we did decide and I pray, I plead with God to bring her through this successfully.
Day -13: Today Kiira had a GFR test, which tests her kidney function. Although results are on the lower end of normal, all other tests looked great and we can proceed with transplant. We signed all the papers today and get admitted Sunday. While waiting between tests, we visited the new Quinn Seymour Chapel–it is such a beautiful space and it’s been amazing to see it go from a concept by a fellow EB family to a reality.
Tonight we went to an event at the hospital and I was able to see some of the local families. It’s so nice to reconnect and know we have support nearby. The things this hospital is doing to advance science and research is remarkable, but even more, they put so much care and thought into making the kids’ comfortable during difficult times.
Kiira was back to her fun, happy self today. I love how she rebounds so quickly and hope it’s true after chemo too. Thank you for your continued prayers!
Day -14: Kiira is currently in the OR getting her central line (a very tiny tube on her chest that goes into a vein, which makes it easier to do blood draws and give her medications and ultimately, the blood from the donor). She is also having an endoscopy to check for strictures in her esophagus. If she has any, they’ll do a dilation. Then they will scope her upper intestines to look for abnormalities. The inflammation in her skin could result in inflammation in her intestines, which would affect her body’s ability to absorb nutrients and could be a cause of her weight loss. But we hope her weight loss is just from her being so busy and needing to eat more. Kiira will also get a skin biopsy to check for collagen VII. She has never shown any on the past 4 biopsies, but it’s a part of the research. They will also see if any cells remain from her previous donor. Lastly, they will change out her gtube. So it’s a busy day for our girl. Please pray all goes well!
Post surgery update:
Kiira did great through her time in the OR. She got her central line placed and new gtube. She had a biopsy on her leg and we should have those results in a few weeks. They also did an endoscopy. Her intestines looked normal but they did small biopsy just to make sure. Kiira’s esophagus showed signs of blistering and slight narrowing. It wasn’t enough to do a dilation but they’ll keep an eye on it. This is very common with EB and people end up choking, even on their own saliva due to the narrowing, which occurs from blistering, webbing, and scarring in the esophagus. Therefore, frequent dilations can be required.
She was pretty grumpy after coming out of anesthesia, but knowing she could see her sisters when we got home helped her. Today taught me that she will be a handful in the hospital this time around–she is definitely not the easy going baby who just lays there like last year.
A couple days ago Kiira got to see Love for Baby Catt, who kindly provided us with new gloves and super cute slippers that Kiira loves and they actually stay on! The girls checked each other out and showed off their purses. It was so cute!
Kiira met with Dr. Tolar on Monday and we went over the basics of the BMT, but having done it before, we sort of know what to expect, although each one will be different. We also met with the dermatologist who determined Kiira’s rash is Nummular Eczema. This is good in that we don’t have a fungal issue to treat so Kiira’s transplant will continue as planned, but can be an ongoing issue to deal with.
Yesterday we had a day off so we took the older girls on rides and Kiira shopped. She LOVES getting out and is such an angel in her stroller. Being isolated after her BMT will be tough for her.
So we are thankful for today’s good outcome and your prayers. We keep taking one day at a time and it helps immensely. Also a big thank you to the sweet kids who sent Kiira some cards. Kiira loves to look at them.
Tomorrow is another early, busy day, so wishing you all a good night.
Day -16: Meet Kiira’s bone marrow donor–her big sis, Miia! We love each of our girls and this process isn’t easy on any of them. However, Miia gets to play such a huge role this time, providing an amazing gift for Kiira, filling all of us with hope, and we couldn’t be more proud of her!
Day -20 (hopefully!): Today’s appointments went so fast that we had an opportunity to meet up with the rest of family to visit the aquarium and have lunch. We want to give Kiira as many outside experiences while we can, because in 10 days, she will be in the hospital for about a month and then in isolation for 6-12 months. Kiira had such a busy day that she fell asleep and I got the rare chance to cuddle with her.
We had a brief scare today from the team that Kiira’s rash might be ring worm or a different fungal issue. If it is, she would need to be on medication for 3-4 weeks, which means the transplant would be delayed. However, it’s clearing up with hydrocortisone, which typically wouldn’t happen with a fungal infection. The dermatologist will try to sample some skin on Monday to rule out anything fungal. This would alter our plans dramatically, so though a call from her doctor today sounded more positive about the outcome, please pray it’s not fungal. On a positive note, where its clearing up, her skin looks better than ever. So maybe the rash was here to “protect” her skin from blisters.
The meeting with the dietician resulted in us increasing her calories but not changing any food content until after transplant. We don’t want to introduce any new factors since we start chemo in 10 days.
Thank you for caring about Kiira and keeping us in your thoughts and prayers!
Day -21: Today was a long day of appointments, including another echocardiogram and EKG. Kiira weighs in at 21.1 lbs, which is more than we thought, but still indicates weight loss since Nov. We meet with a dietician tomorrow and I’m gathering info about an anti-inflammatory gtube diet to give Kiira healthy calories to help her heal and grow normally. We found out her BMT is delayed one day, which means Kiira and Love for Baby Catt (born 2 day apart), will have BMTs on the same day!
Everything looks good so far and having gone through it before, we feel more at ease, although we know it can be a totally different experience. The chemo quantities are nearly the same, but they spread them out further, so we’ll be admitted 9 days before the BMT, on July 24th.
We have also been able to alleviate Kiira’s rash and dramatically reduce her itching. We hope now she can sleep more peacefully and not be in so much discomfort. We meet with a dermatologist next week and maybe they can figure out the cause (was it just heat, EB or something else?).
Tomorrow we go back for more appointments. Thank you for your prayers!
Day -23: We made it “home”! This time we arrived to a fully furnished apartment, which made moving in SO much easier than last year. I am beyond thankful for our insurance helping us with this process. They may not provide bandages, but they go above and beyond with treatments for Kiira to make the process easier.
We are getting settled in here and both of us work tomorrow, but hope to take some time to explore our new downtown neighborhood. The girls were troopers on this road trip but beyond happy to be out of the car.
We have some tough decisions and discussions ahead, so please pray that we make the right choices for our family. Thank you!
Day -24: Today we drove 8+ hours from Billings, MT to Bismarck, ND with a detour around the Theodore Roosevelt National Park, a part of the Badlands. It was incredible! We finally got to see buffalo and Kiira, in her true mimicking fashion, learned how to say that plus a ton of other words this trip. I have a great picture of the buffalo walking by Kiira on my other camera, but the pics below capture the day. We were chased by lightening storms and they finally arrived when we got to our hotel–with downpours and constant lightening, and a rainbow in a red sky! I just pray that Kiira’s bandages, which are stored on the roof bag on our van, stayed dry!
Poor Kiira sat in her seat all day and had to get bandages done when we got to the hotel. She was a champ though and let us tend to her new and old wounds. Her feet are still insanely itchy and dry and we just don’t want to resort to medicine. We look forward to meeting with all the doctors in Minneapolis next week and hopefully we can figure something out.
Late tomorrow we arrive in Minneapolis and have 1 day to get settled. We got Kiira’s schedule and every day is packed with appointments from the 13th-20th, but we have the weekend off to have our last weekend of fun all together until at least November. I am filled with anticipation and concern, but so ready to get started!