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Unfortunately we have not been able to update this webpage as often as we had hoped, but you can get more frequent updates on Kiira and her battle with Epidermolysis Bullosa (EB) through her Facebook page
Join us for Quarter Craze, our annual MOMS Club fundraiser, on Thursday, May 18 at Cattlemen’s Restaurant in Roseville. The event takes place from 6 p.m. to 9 p.m. Tickets are $3 per person in advance; and $5 at the door. Ticket price includes complimentary appetizers and a cash bar. Be sure to bring plenty of quarters for the live auction with some great prizes from local businesses and events, such as SF Giants, NASCAR race, Oakland A’s Tickets, and more!! This year’s proceeds will go to help Kiira and spread awareness about Epidermolysis Bullosa. Kiira Kinkle was born with recessive dystrophic epidermolysis bullosa, a rare genetic condition in which her skin blisters with the slightest touch. Bandaging her limbs are the only way to help prevent, but also treat her wounds. The bandages and medical expenses of such a condition are ongoing and expansive. We hope to see you at on the 18th!
When: May 18th from 6-9pm
Where: Cattlemen’s Rocklin, CA
Buy tickets: https://www.eventbrite.com/e/moms-club-quarter-craze-2017-tickets-31899684816
Learn More: https://www.facebook.com/events/1037449219693350/
Day +275: The past couple of weeks have flown by. Everyone is over their strep and Kiira’s labs on Monday showed improvement–symptoms of hemolytic anemia are getting better and Epstein Barr Virus is coming down. We are thankful for the positive trend!
We got our dates to return to Minnesota for the 1-year checkup in mid-July. It’s hard to believe it’s nearly been another year. During the visit, we have an opportunity to do a special skin grafting procedure, Cellutome hematopoietic graft, for Kiira’s chronic wounds. They would use a vacuum-like device on Miia (Kiira’s sister and BMT donor), a painless procedure that grabs the top layers of skin and put those cells on Kiira. The trial hypothesizes that those areas would have long-lasting effects of wound healing, because the skin would be producing collagen VII (which Kiira is missing) in that area of skin. Kiira’s knees and hands would be our top priority, but it can only be done on areas with open wounds at the time of the procedure. The lightest friction on her knees–the act of sitting on the floor and stretching her leg out, blisters her entire knee. Other areas of her skin are fine with much more friction, but not her knees. We don’t know if the grafting works since this is the first year of the trial, but we are hopeful that in combination with the BMT, it will further strengthen Kiira’s really fragile areas.
Thank you for your continued prayers!
Remember, if you are in the area, come meet Kiira on May 18th from 6-9 pm at Cattlemen’s in Rocklin, Ca for a fun auction event with loads of prizes. All adults are welcome and remember your quarters to bid on prizes. You also do not have to stay the whole time to get your prizes. If you have any other questions, please message us. Hope to see you there!
Day +265: Thankfully, I made my trip for the weekend while Jason held down the fort. It turns out he and one of our girls had strep throat and Kiira had an ear infection, possible ruptured ear drum, and her cultured wound came back infected. Strep A hit them all and with Kiira chewing on her fingers, touching her ears and neck, it’s no wonder the strep spread to other parts of her body. Thank goodness for antibiotics though, because they all feel much better and hopefully we got Kiira’s infections before they get out of control. She is more energetic and even enjoyed the outdoors tonight. Love seeing that smiley face again!
Day +259: To the person in front of me at Starbucks, thank you for leaving a gift card specifically for Kiira! She loves to go with me, even if she isn’t feeling well. She has had a fever on and off, a cold, thrush from the steroids, an entire palm missing skin, a large head wound, and other wounds that are possibly infected, all of which probably contributed to her white blood cell count skyrocketing this week. She missed our entire Easter celebration and we laid low all week trying to remove any cause for more injury and allow her time to heal. We had so much fun last week, meeting up with friends, playing hard, and her sisters were off for spring break, but the activity took its toll. However, there is good news too! Kiira’s labs show the steroids are eliminating the antibodies causing her anemia and the Epstein Barr virus counts are lower.
Tomorrow I head out on a 4-day trip and I hate to leave Kiira when she is feeling so miserable. Plus Jason has been pretty sick all week, but I’m praying they feel better tomorrow so that they can get through the weekend in better spirits.
Day +247: Kiira has accomplished a new milestone–a forward roll! She is so proud of herself and so are we! Though she has a couple of skin tears on her forehead from her attempts over the last week, thankfully her hair protects the top of her head.
To follow up on our last post, more tests came back indicating that Kiira does have hemolytic anemia again (antibodies are attacking her red blood cells), as well as the Epstein Barr Virus. We resumed steroid treatment and will check her levels again in a week. The first year after a bone marrow transplant can be full of ups and downs. We knew this going in but having to go through it twice, it’s been nearly 2 years of it now and while I almost feel immune to any less-favorable news, I know it’s more likely just suppressed. However, I still don’t regret the BMT and have faith she will overcome all of these “side effects” of having a lowered immune system. Besides, she is happy and is deemed our family comedian; she certainly doesn’t let any of this “stuff” take her down. So how can we not be filled with gratitude for her beautiful presence in our lives?
Day +243: Kiira had labs today and though they’re ok for now, they seem to indicate she might still have antibodies attacking her red blood cells because her counts changed to abnormal levels since stopping steroids last week. We aren’t doing anything at this point, but I’m hoping she stabilizes on her own in the next week so we don’t have to start another round of steroids.
Kiira had a busy week at the park, gymnastics, first time at our church in nearly 2 years, and just being so fun! We’ve had a couple of injuries but I’m letting Kiira play, climb, slide, run like a regular kid and every toddler falls. She is healing quickly still and we have no need for pain meds and no infections. I can’t believe how much joy she brings to our lives!
Remember, if you can join us, come out on May 18th for a fun night of prizes, including SF Giants tickets, floor seats to Sacramento Kings next season, Santa Cruz Boardwalk tickets, local businesses, and more! Event link is in the comments.
Day +235: Kiira has been a busy girl! She attended her first friends’ birthday party, had a couple play dates, still doing gymnastics and has become quite the show off. She asks me if her clothes match and wants me to video her singing or dancing. She is attempting to ride a bike and a scooter. She can do all this and rarely gets blisters or cuts at this point. We gave her the last dose of steroids for the anemia yesterday, which means she only takes 2 medications now: miralax and an anti-reflux med. We are so fortunate, as we see so many others list off a dozen or more medications to help with all the EB complications. I’m hoping labs this week show she maintains normal levels of everything tested so we can stay out of the hospital and off medications for awhile.
I feel the need to mention that this past week a 10-year old boy and a 30-year old with EB passed away. The fight for life with EB is hard and I can’t take one day for granted with Kiira. I keep praying she will live a long life free of pain and complications; that a cure will be found for all who suffer.
Day +126: We had some wonderful family time in Tahoe this past weekend. There were some experiences that showed me the love and generosity of others. I’m thankful for my mom, aunt and uncle, but also a few strangers who touched our lives. It still amazes me how God works through people, especially when they probably don’t even have any idea. So just remember, you may never know how your small (or big) gesture can affect someone.
As for an update on Kiira: Kiira developed a rash on Thursday that’s gotten worse. There are no other symptoms and it’s not itchy, so it might be Graph vs Host Disease (GVHD), which means Miia’s cells are attacking Kiira’s body. Though it can be a bigger issue, it’s a sign that Miia’s cells are effectively working in a Kiira’s body. They aren’t doing a biopsy to confirm it, but it’s somewhat typical as you wean off immunosuppressants. We hope it doesn’t develop into the gut or liver, but in the meantime, we are treating the rash.
Today we drew Kiira’s lab to recheck her CMV. I didn’t realize not all lab techs can draw from a central line, so it meant getting poked. There is a class I can take to teach me to draw blood from the lines, which I might do. It’s pretty amazing all that I’ve learned as I care for Kiira. I feel like I’m getting my nursing degree after all.
Thank you for your continued prayers. Kiira is still doing great and these little hiccups don’t seem to affect her at all.
Day +118: The last week has been a whirlwind–two Thanksgiving meals, Christmas decorating, unpacking/reorganizing the house, visiting friends and family, and back to school/work this week. The girls all have a lot of fun together and I love watching them play and help each other out. It’s also been an adjustment, understandably. The girls had been without me for 4 months and now they have to get used to another parent around, but also want to be with me nonstop. We’ll get adjusted soon enough, but I’m just glad they show Kiira so much love and that we are all back together again.
We did find out Kiira’s CMV is back, so please pray that it goes back down on its own now that we are weaning off the immunosuppressants. We will retest it again next week. We also start feeding therapy soon since she still isn’t really eating. I’m hoping it will come back to her quickly after a few sessions.
Over Thanksgiving I spent a lot of time thinking about how thankful I am for so many things. I’ve had amazing friends, family, and strangers show us support and it has really helped our family endure the hardships EB brought upon us. I’m thankful Kiira had 2 opportunities do a BMT, both covered by insurance. I’m thankful that though we had to do it twice, both times Kiira had no real complications. I’m thankful Kiira has had no strictures in her esophagus or infections in her skin. I’m thankful for my husband who did an incredible job holding down the fort here, but being so supportive of me from afar. I’m thankful EB has caused no developmental delays in Kiira. I’m thankful Kiira’s sisters love her and push her to achieve more rather than treat her differently. I can go on and on. God has provided in so many ways, through so many means. And though we still pray for a cure for EB, we are thankful we aren’t on this journey alone.