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Monthly Archives: April 2016
Day +300: I’m not sure there is a point of still counting how many days post transplant we are since we might as well consider Kiira back to pre-BMT status, but 300 days… At this time last year we put our house up for sale to prepare for a move to Minnesota. We left everything we knew to give Kiira the best chance available at this time. Now we face the same decision–do we put her through another bone marrow transplant in Minnesota? The option is available to her and we have a call scheduled next week with Dr. Tolar to answer our long list of heavy questions. It doesn’t help that we can’t find any families who paved the way for us, so this time we have no one else to ask about their experience with a second BMT.
Despite the very difficult decisions we face, we celebrate that Kiira finished her immunosuppressants last Friday. Although we are supposed to be careful about being outside or around too many people for another 6 weeks, she got to play with her sisters in a wagon and she LOVED it. It was so fun to see her being out and doing things they do.
Kiira is still pretty happy but started throwing frequent fits, especially at meal time. We’ve already had 10 months of feeding therapy, and come so far, but this is just the next challenge of childhood. She also fights us popping blisters and yells “don’t touch!” Kiira has been injuring herself a lot lately, but behind her smile and strength to try her best to be a normal kid, these wounds are always hiding. EB is a brutal life sentence.
We ask for prayers to help us make the best decision for Kiira and our family and for Kiira’s skin to get stronger. Thank you!
Day +292: Today we received the unfortunate news that Kiira’s donor cells continued to fall. As before, she doesn’t have any donor myeloid cells (CD15) but the lymphoid cells (CD3) are still there (27%, about 10% down from before). This would mean that we may not be able to sustain the graft (the transplant) long term and we will discuss the options when we return to Minnesota the last week of June. 😔
We know you don’t need to be 100% engrafted to see skin improvement, so even the little bit of donor cells left could still be helping Kiira, but I don’t know what happens when they both fall to zero. I guess it will be as though we never did the transplant.
It’s definitely not what I hoped but I know it doesn’t change what we do day to day or who Kiira is and what she is accomplishing. I know I can’t look to a year or five years down the road, and I need to take each thing as it comes. All the things I hoped a transplant would alleviate in Kiira’s condition, (daily bandage changes, being ultra-careful with touching her, a longer, less painful life, etc) will just continue to be a part of our daily lives.
I appreciate the prayers, that we will have patience and wisdom to make the right decisions for Kiira and that her skin will strengthen now in a way that only God can provide.
Day +287: On the 12th Kiira turned 18 months old. She is walking almost exclusively now, talking up a storm and finally, 10 months later, eating like a champ. We have so, so much to be thankful for. While others are fighting for their lives or in the hospital, time and time again, choking on esophageal lining or fighting infections, Kiira is home and thriving. My head knows I should be thankful, but the concern and anxiety is never ending. Now Kiira’s iron is low, so we are starting her on iron supplements. The back of her neck has been rashy (heat, hair, a shirt?) but now is full of crusted sores and blisters. It’s an area we’ve never had issues with and I hoped wouldn’t be, but it reminds me just because we don’t deal with an area yet, EB eventually takes everything. That is why we need a cure. There are some amazing doctors working hard on it and we pray that God helps them figure it out. Soon.
Day +284: Today we took Kiira’s labs to find out her 90 day engraftment results since her boost of donor cells. Please pray the results are better than the 30 day test so that we haven’t completely lost the bone marrow transplant. We are waiting for results of this test before we make our arrangements to go to Minnesota for our one-year follow up in July. I so badly want the transplant to have worked!
Kiira’s finger, only one week later and days of pain and bleeding, has closed up and is on the mend. We are back to using gloves on the hand, but our “old-fashioned” wrapping was the best way to protect and heal the finger quickly.
Thank you for praying for Kiira and our family.
Day +279: Kiira had occupational and physical therapy today, but it was mostly an assessment of her current abilities and a plan for her future–to keep her core strong and give her multiple ways to get around in case something is injured. For example, crawling, walking on her knees, or walking. There’s a chance she will need a wheelchair to get around for any distance or longer length of time (like school), but giving her optional ways to move, could delay that, just as she is currently using the back of her injured hand to crawl.
Having a child with so many needs, really takes a village and I am so thankful for my aunts and mom who step in at a moments notice. There are so many others too, and although I’m capable of caring for my kids and home, it’s so nice to have some duties relieved now and then. Today the older girls had soccer but with the nearly 90 degree weather, it’s way too hot for Kiira to be outside, so once again, I needed a sitter and my aunt stepped in. Thank you! The heat makes Kiira’s skin worse, so we’ll have to be creative with the summer heat.
In the picture, Kiira put on a brave smile for the camera while we tended to her still bleeding finger. Miia covered her ears and huddled in a chair during the crying and Aliisa distracts herself, but later told Kiira she is so brave. Kiira will need her sisters so much, but I hope they learn how to be compassionate, strong, and faithful because of Kiira.
Thank you for your continued prayers and loving on our sweet Kiira. You provide us with encouragement that helps us face each day. Thank you!
Day +278: Yesterday Kiira had her final feeding therapy. Her therapist feels Kiira is making great progress with eating and the weekly visits with the in-home occupational therapist can assist us going forward. She was a joy to work with and brought us so far over the last 5 months, but it will be nice to have one less thing.
I had the opportunity to get away with a friend for the weekend. It was so nice to spend time at the beach, which is my favorite place to be. Jason took wonderful care of the girls and I am so grateful that he is willing to care for 3 kiddos by himself so I can get a break.
When I walked in the door from my trip, Kiira’s finger had just been stepped on by a sibling and it tore nearly all the skin off. It’s the first time we gave her Tylenol for EB related pain because she was inconsolable. Every time we bandage it, it’s excruciating for her and she screams “no, no, no!”, and looking at it makes me feel sick because the outer skin is just loosely encasing the raw meat of a finger. But despite the set back, Kiira found a way to crawl using the back of her hand and hold toys or a cup without the use of most of her fingers. She always finds a way.
Tonight a very sweet friend brought us dinner, took on the long, difficult task of feeding Kiira dinner, cleaned up the kitchen, helped with the kids’ homework and read to the girls. It was such a blessing and set a peaceful mood for the house for the rest of the evening. Thank you Asha!
I still have my good and bad days or moments. In front of Kiira I try to validate her pain, but remain positive and hopeful. On my own though, I cry with her, for her, because I can’t take this away from her. But she just smiles and gives us kisses as though to say, “It’s ok that you can’t take it away. I still love you. I’ll find a way to live with it.”