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After 7 days of driving and staying in a hotel, we made it to our new home to find a freshly cleaned house, a welcome package from a sweet family in our bible study group, and friends and family ready to help us unload. We love our new home and are busy unpacking and settling in. Unfortunately our TV cracked in the move, but we all got here in one piece, thankfully!

The girls were so excited to be back and explored the entire house, and they scattered their toys in each room faster than we could put things away. It’s so hot here, so poor Kiira already has a face rash and we have to figure out a way to keep her cool with all the bandages and long sleeved footies. I wish her skin was tough enough to crawl in a onsie, but it’s just not. At least winter is around the corner, maybe.

It was so great to see familiar faces and we look forward to seeing more over the coming week. Kiira goes in for labs on Monday and has her first doctor appointment on Tuesday.

Our journey in Minnesota feels surreal, already like a distant memory. We don’t know what the next season in life holds for us, but for now we are just enjoying being home.

Today is also Kiira’s first birthday. I wish we were having a huge party and she was smashing her face in cake, but instead she gets to ride in the car for hours as we drive from Minnesota to California over the next week. We went to see Mount Rushmore, but since it’s windy here and wind stirs up spores that can make her very sick, she had to stay in the car and we took turns looking at it. Yesterday, Kiira scratched her eye. It was horrifying, because we could see the skin on the eyeball was peeled back and she wouldn’t open her eye as she cried in pain. I’ve read it can take days to heal, but miraculously, when she woke up, she was able to open her eye today without pain. She has a little redness on the outer corner, but even the pulled skin we saw on the eyeball last night is gone or healed. Thank you for your prayers, because God answered them!

So a one year old–I wasn’t sure she would live to see her first birthday since Epidermolysis Bullosa can lead to death especially in the first year, but she did and she is thriving. She weighs 21lbs and is 28″ tall. She shakes her head no, signs “thank you”, says several words, stands holding on to things, and adores her sisters. She has an infectious laugh and strong temper. Despite having EB, she doesn’t let it slow her down. I am so blessed by God’s faithfulness in providing for her and our family as we adjusted to her medical needs. We pray her second year leads to continued healing and instead of being riddled with fear, that we can celebrate all the joys of toddlerhood.

Day +100: This day is so significant in the BMT world. It marks the earliest possible day you can go home and we got the final word that Kiira can go home!

With that said, we are wasting no time and packing like maniacs to leave tomorrow. We can no longer take our scenic southern route, because Kiira needs to be back home to see a doctor as soon as we get back in town. We did not get the engraftment numbers back yet (tells us how much is her cells vs the donor’s), but we know she has a very good T-cell count and no B cells because of the medication she took to get rid of the Epstein-Barr Virus. It will take around 6 months for those cells to return. Both T and B cells are a vital part of your immune system, so we still have to keep Kiira safe from germs.

Though our journey here is done, at home she will still go in for weekly labs and doctor visits and she will be on an immunosuppressant that will keep us from taking her to gatherings with kids and large crowds, including things like church and even big family gatherings at holidays. While that is disheartening, Kiira’s health, especially in the midst of flu season (flu has a high risk of death in immunocompromised people), is of utmost importance to us and we are so beyond blessed to be able to go home at day 100. We will come back to Minnesota for a week in early January to do another biopsy and round of tests.

We can’t say enough good things about the doctors and nurses at the University of Minnesota Children’s Hospital. They took care of Kiira like she was their own and we are so happy we came here to get her treated. We continue to pray that her donor cells are growing and improving her skin every day!

Day +96: Just to update everyone, Kiira is back home and sleeping after a long day at the hospital. The procedures all went well. She has another 5 holes on her leg where they took the biopsy, but it is close enough to her previous biopsy site that she will only have one set of scars. They tried to do the endoscopy through her gtube site, but the hole had healed up around the tube too well and they couldn’t fit the scope through so they went in through her mouth, which is a little scarier due to the possibility of damaging her airway. Everything went great though–there were no strictures and the inflammation that they saw in her initial scope is gone too! In preparation for her 6 month visit we will have to get her fitted with a bigger gtube, but I think that is a pretty simple procedure. The central line was removed without any issues and it is already so nice not to have those ports dangling from her chest.

We’re hoping to get the engraftment results during Kiira’s final clinic appointment on Friday. Praying for high numbers meaning no boosts!

Day +91: While our hearts still mourn the loss of Abigail yesterday, we wanted to update you on Kiira. She had what will most likely be her last physical and feeding therapy on Monday. She got to go on her first swing in physical therapy, but she wasn’t sure what to think of it. We will miss Niki and Kristen so much as they’ve become a part of our weekly lives and helped Kiira immensely. Kiira also had her last central line bandage change, as long as all goes as planned to remove it on Monday. So exciting! She had an eye exam and hated having her eyes dilated but the doctors did a great job with her, as all the doctors here have. Kiira has a slight astigmatism. It’s likely that it will go away with age, but could get worse, so they’ll keep an eye on that. Eye problems, usually due to frequent corneal abrasions, are very common with EB. Kiira has never had a corneal abrasion, but they’re painful, and can cause eye damage, so we hope to avoid them if at all possible.

Yesterday we went in for labs, but don’t have the results of those yet. The staff told me they heard rumors of us heading home, so it feels more of a real possibility. We have an appointment on Friday with Dr. Tolar. It’s been awhile since I’ve seen him, so I look forward to it.

As for an update on our apartment, they told us again that we have to pay through November, unless they get it rented out early. By coincidence (or God), our cousin has a connection with the owners so we are trying to get their help with this rule. In the meantime we are also trying to go from the bottom up, so hopefully someone in the chain will excuse us from the November payment.

Today my mom and I took the girls for one last trip to the Mall of America and Jason enjoyed his day with Kiira. We ran out of some of our bandages since we got here early, didn’t get bandages in the hospital, and had to go up in sizes. Thankfully Kiira hasn’t had many injuries in several days, so it buys us time while we wait for them. We have a ton in California, but we didn’t pack enough for here.

Yesterday we saw Kiira sign “thank you” for the first time, so we captured it on video. It’s so adorable to see her communicate more and more.

Please pray for Abigail’s family as they prepare for her funeral this Saturday. I know they can use help with medical bills and funeral expenses, so if you feel moved to do so, you can access the gofundme link on her Facebook page Prayers For Abigail Updates.

Day +84: I want to clarify our recent posts. Epstein Barr Virus (EBV) came up as a result of Kiira’s lowered immune system due to the chemo and radiation. It’s a common virus but very serious in immunocompromised people. We are so thankful that it only took one treatment and aside from a little nausea, Kiira didn’t seem impacted by the virus or treatment. We hope it continues to stay away because it can cause her to lose her transplant.

Kiira still has Recessive Dystrophic Epidermolysis Bullosa (EB). The bone marrow transplant will never take that away as it’s a part of her DNA. The hope is that the donor cells will help her make Collagen VII so that her skin will be tougher–less blistering and faster healing. However the full benefits of the transplant can take years. It does seem that Kiira’s skin is getting a bit tougher. Crawling takes its toll because of so much friction, but we see other little changes–we tried a normal onsie on her today. As a newborn, the seams were enough to cause blisters, but with these normal clothes, she had no issues. On the other hand, she fell on the hardwood and tore the skin on her forehead a few days ago and today fell against my leg and I had soft leggings on, but it was enough to tear the skin off her cheek. Also now when she gets hurt or a blister, she cries, which she didn’t usually do until recently. So she still very much has EB, and we hope her skin will get stronger as time goes on.

There is no way I could put her in a normal day care or class at church or have just anyone care for her. She still requires delicate handling, but we’ve come so far from the days where we would only touch her with aquaphor on our hands or carry her around on a pillow. And I’m so thankful for that.

It was such a joy to see Kiira in the video that The Butterfly Fund put together (see previous post). This organization and so many people have showed us an outpouring of love that we could never repay. Thank you!

I am fighting a bit of a cold and I think the girls already had it (even Kiira had a bit of a runny nose), but please pray that it doesn’t affect her any further.

Thank you and God bless you for following Kiira’s story!

Day +73: Today Kiira is 11 Months old. With bandages and clothes, she weighs 21lbs and is about 28″ long. She doesn’t eat or drink, but she says her versions of mama, dada, up, ball, and diaper. She dances whenever music comes on and keeps trying to pull up on furniture. She isn’t strong enough to do it on her own yet, but she is getting stronger every day. While we are trying to keep her from getting sick, she likes to crawl to the shoes and put them in her mouth. She can turn the Xbox on and off, take selfies on the phone, and loves to play with her sisters. It’s so cute to watch her follow them around. She is easily entertained and loves to laugh, but has a temper too. She does not want to be held in place for bandages or diaper changes. Thank goodness for her pacifier, music, and distracting toys.

Kiira is a joy.

Day +72: Although overall the clinic appointment today was uneventful, we found out Kiira’s Epstein-Barr Virus (EBV) numbers are back up. This virus is very serious for bone marrow transplant patients and they’ve been watching it closely. I was so excited last week when it nearly disappeared on its own. Kiira still has no symptoms, but since it came back, they are planning to treat it with one dose of Rituximab, which will hopefully knock it out for good. I don’t know any details about when it will take place or what to expect. Once again, she acts like nothing is happening to her, and is as happy as can be, except when we hold her down for gtube feedings and bandages, because she just wants to go, go, go.

We had hoped to visit Lake Superior in the next couple of weeks, but Kiira’s doctors gave us a list of reasons why she shouldn’t go. A cabin is dirty, the forest is full of spores and bacteria, too far from the hospital… I’m not sure how this will advice will impact our plans to drive home with her in potentially 30ish days, but it made me realize that even though she is doing well, we have to be so careful not to jeopardize that.

I also have been spending time researching new clothes (something other than footies) and shoes for Kiira. I have no idea what will work over her bandages, but nothing is simple with EB and now a low immune system to consider when making plans.

While Kiira still won’t eat, she loved drinking from my cup, so maybe we’re skipping all the baby stuff and jumping to “big girl cups” as my girls call it.

Please pray that the EBV will go away and not affect Kiira at all. Also, I received news that a friend’s baby passed away unexpectedly today (not EB related). No matter the reason, it is impossible to understand why. Please say a prayer for this family tonight.

Day +69: Kiira had clinic today and good news–all of her numbers are coming up on their own now that the EBV is gone, so she didn’t need any transfusions.

While the whole blood panel is important, these are the 3 main measurements the BMT team looks at in her blood, and all increased:

Hemoglobin: 9.6
WBC: increased from 3.7, but we don’t have today’s number.
ANC: 1.3

These results are all an answer to our prayers and although they can go up and down, we hope they continue to increase to normal levels.

Plus, today we had no blisters to pop; any day without blisters is a great day! We hope to see many more days like this now that we are further out from transplant.

We were supposed to drop down to going to clinic once a week, but we actually have to go in every day this week for something. As inconvenient as that might be, I can’t complain because Kiira is doing great!

I try to keep up with other families on this journey and today we learned Rally for Raul is heading here on Sunday to start his BMT process. There are still many others suffering greatly from EB and even the BMT process. Please keep them in your prayers, along with Kiira (although God deserves a lot of praise too).

Day +62: Kiira had an IVIG infusion today. We started the day with a quick visit to the moms of Anton and Abigail and then we were stuck in the infusion room for the next 4 hours. I think it’s my fault, but Kiira threw up before we even started, so she got a sponge bath, clean outfit and bedding and then we finally started the infusion. She was sleepy from the Benadryl but was so busy crawling around and pulling up on her knees on the crib that she only slept about 15 minutes. She did great and she took a long nap when we got home while we worked and took the girls to the pool. Today we also said goodbye to Love for Baby Catt. They’re just starting their journey and waiting for approval to get a BMT. They also brought Kiira a fun new toy, along with new gloves and tights that our insurance won’t cover. Thank you!

We will have more updates on Friday about Kiira’s BMT numbers. Praying the engraftment is high and Epstein-Barr Virus (EBV) numbers are undetectable!