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Monthly Archives: January 2016
Well, I totally misunderstood Dr. Tolar’s email from Saturday, but I guess it let me have a couple good days while we prepared for our return to Minnesota. Kiira still does not need chemo before her boost on Wednesday as he wants to preserve her organs, but here are the numbers as they relate to types of T cells:
CD3: 48% donor (down from 74%);
CD15: 0% donor (down from 5%).
While she is on the way to losing her transplant, the hope is that the boost will add cd15 cells and they’ll increase because the cd3 is present and cd3 helps the cd15 in our immune systems. He said it’s unusual for the transplant to act like this–usually CD15 is higher than CD3, but by 6 months the numbers even out, so usually they’re either both around 100 or 0. At this point, the lack of cd15 is dragging down the cd3 and this scenario may be because she developed an antigen to the donor. This boost will use up the last of the donor blood, but if she has developed an antigen and therefore, antibodies, we could not use the same donor if she needs a second transplant. Keep in mind, she only had one perfectly matched donor. This was/is our best chance in my mind, but God has His own ways sometimes.
They will give Kiira the boost on Wednesday, test her in 30 and 90 days and decide where to go from there. She will remain on CSA, the immunosuppressant, so that means she will continue to be in her bubble (in a mask and not in crowded places) for at least 3 more months. Thanks to El Niño, it’s probably better off we stay inside anyway.
I can’t even fathom going through another transplant again, uprooting my family, hoping the second go is as easy on Kiira as before, but successful. I keep reminding myself, one day at a time, so today I got answers. Not what I wanted to hear, but I got them and now it’s just more waiting, and trusting.
Tomorrow she goes in the OR at 11:30 am CST, so please pray that she does well under anesthesia, she has no strictures in her esophagus, her biopsy heals quickly, and the central line goes in without a hitch and Kiira doesn’t pull at it. And for my girls at home, who said they are trying to be brave and not cry because they miss me.
We made it to Minnesota! The flight was on time and smooth, but Kiira was not a fan of sitting still for the 2 flights totaling 5 hours plus a layover and she made it well-known. One woman even told me after the flight that she was a pediatric nurse and thought about giving me tips for flying with children. Trust me, I tried just about everything–all my tricks with my other 2 don’t work for Kiira! If someone has tips for a 15-month old who wants to be on the move, doesn’t know how to talk well so she screeches to tell us, doesn’t eat much or take a bottle and only likes a paci for nighttime, and Benadryl does not knock her out, plus needs to be contained from germs and difficult to handle with her skin, please do give me advice! Anyway, this picture is from the beginning of the flight when we were both happy 🙂
Our dear friend Stacy picked us up in the freezing cold and had snacks, waters, our favorite Finnish breads, a toy for Kiira and other necessities that were such a blessing! Thank you!!
We are off to bed to start out a busy week of doctor appointments. I’ll admit, I am so, so sad I won’t be seeing Vanessa and Help Anton this week. I loved stopping in to chat with them each week, and it feels like something is missing here. But I hope to see a couple other kiddos who are here for their BMTs.
Please pray for good reports tomorrow when we meet with Dr. Tolar.
Today is a day of good news! After an amazing worship night last night with friends, many of them prayed over us and for Kiira with the hope that Kiira’s donor numbers would increase enough that she wouldn’t need chemo. Today I got an email from Dr. Tolar to tell us that the majority of her T cells are still donor (CD15 are all recipient), and the plan now is to give her a boost with no conditioning (no chemo or immunosuppression). We are so happy and I can’t wait to find out exact numbers on Monday, but going into this trip, this news made me feel so much better and all I can do is praise God for it as we witness the power of answered prayer once again.
Also, after about 4 days of favoring one foot and acting grumpy and in pain, yesterday Kiira was back to her cheerful self and walking on her own with a push toy. I know most kids go through this and it is probably exciting mostly to only the parents, but I am so happy to see Kiira reach this milestone, because I honestly wondered if she would ever walk. She never ceases to amaze me!
We fly out tomorrow and hope that Kiira does well on the flight and somehow we avoid any sicknesses that could be lurking on the flight. I am so glad my mom is joining me and can help me with ton of luggage we need to carry bandages, feeding tube and pump supplies, toys, and clothes for 3 degree weather we will arrive to tomorrow.
We will keep you updated about our doctor visits in Minnesota and appreciate your continued prayers!
Day +188: As a parent, it’s awful to feel helpless. Right now all we can do is wait for a cure, but in the meantime Kiira has another huge blister covering the top of her foot by her ankle, wrapping around to the bottom. The bottoms of her feet have never been affected before and I somehow hoped they never would be so that she could walk with more ease, but now that it’s been injured, it’s that much more susceptible to injury again. This one is painful to her, so anytime she tries to stand, which is about every minute, she winces in pain and either stands on only one foot or falls down. All we can do is try to relieve the pain by popping the blister every time it fills, applying cream, and rewrapping her with ever-increasing bandages. Tonight, during a second bandage change today, the foot even looked swollen. Plus she now points to her fingers and does a half cry whenever they hurt, multiple times a day and deals with mouth blisters frequently. (Don’t worry–she is still overall happy). I’ve come to grips that Kiira has EB and will always have it, but seeing this new level of pain, where it’s starting to inhibit her, breaks my heart and realistically, it’s just the beginning…
There’s been a lot of discussion in the EB community about pain management. Most kids are on morphine or much stronger drugs and the push for marijuana use for EB (a more natural remedy) is prevalent. Kiira has never been on pain meds, besides a couple days after her gtube surgery and BMT. I’ve heard the drugs make the skin worse, cause personality and emotional changes including hallucinations and I have to imagine affects learning as well. I haven’t felt like she has needed them because her her pain is acute and temporary and things like distraction work so well during bandages changes. I wouldn’t give my other girls morphine for a cut on their knee, but when it becomes chronic pain, the need for better pain management will arise and we’ll cross that bridge when it comes.
We heard from Dr. Tolar about her biopsy report and it shows she *might* have very minimal collagen VII present from the October biopsy. His feeling is that you don’t need much, so it might be enough to make her skin stronger. Maybe it’s helping parts of her but not her fingers or feet, which are at their worst. It has only been 6 months and hopefully the donor cells are increasing and we will see better results in the next 6 months, but watching a lot of other stories confirms that a BMT is not even close to a cure–it just buys us time. I haven’t lost all hope–I know doctors are working so hard and gene editing trials on animals is getting further and more successful, but it’s still a long way off. Kiira was given to us for a reason, and it’s our job to not just care for her, but also show her the unconditional love of God until her cure comes.
On a note of thanksgiving, thank you to our bible study group for planning to bring Jason and the kids meals while Kiira and I are in Minnesota. In the midst of your own business and hardships, you are blessing our family and we are so thankful! Also to the girls’ school for promising to love on them while I am gone–I know it’s only a week, but it’s comforting to know they’re in good hands while I focus on Kiira.
Thank you for your continued prayers for our sweet girl!
Day +184 / 6 Months: Happy New Year! 2015 was by far the craziest year for us. I don’t have a specific set of resolutions, but I’m sure Kiira will still take up much of time and thoughts and I’ll try to integrate improvements to my own overall well-being in between. We are hopeful and holding on to our faith that Kiira will continue to thrive and we will do our best to love on her and help her flourish.
It’s been 6 months since Kiira’s Bone Marrow Transplant, a day that is kind of like a new birthday for her, a new chance at a life with less severe EB. It feels like a lifetime ago that we packed up our house and moved to Minnesota for the BMT and have since returned home. We had a great Christmas with family and fun New Year’s Eve with friends like old times, so we are slowly putting our lives back together. We face many unknowns about the success of her BMT, but we hope for many answers when we return to Minnesota in about a week.
Kiira is getting 4 teeth at once and has been biting her fingers and been grumpier than usual as a result, but it will be fun to see her with more teeth. Today we gave her a full bath, bandage free, which are few and far between, but every time we do, I’m reminded how much she loves them at this age, so I should do it more often. Her feet are healing slowly but they look much better than last week and the extra padding is helping so far.
We also got her biopsy images back today from early October, but I have no idea what they mean. The hope is that she is creating Collagen VII and they are producing anchoring fibrils, which is like the glue between our layers of skin, and necessary for her to stop blistering and peeling back skin with the slight friction. I imagine the images will be explained to me in Minnesota.
I’m so unbelievably thankful for your prayers and support. I don’t know how I would have made it through the last year without them and I know we will continue to need them for a long time to come. So thank you and wishing you a very blessed 2016!