Monthly Archives: May 2015

We have to start off this post thanking everyone for praying for Kiira, because once again, prayers were answered! I got a call on Wednesday that the donor is willing to donate and though she still has to pass her physical, we have a tentative transplant date of June 30th, which means work up (blood work and Kiira’s physical) will begin June 15th. The donor’s physical is scheduled for the end of this week and then we should have results the week of the 8th. We will then know for sure whether or not we start the 15th. So we arrived in MN 2-1/2 weeks early but it has been nice getting settled in and acclimated to this city.

They call the days before transplant negative days, transplant is day 0 and then you start counting up. The goal would be to be released from care at day +100, which would be right around her 1st birthday. So if all goes as planned, we are at day -30.

Over the past few days, we finished grocery shopping, ordered mattresses (so we don’t have to sleep on the floor anymore), and enjoyed hanging out in our apartment, and even snuck in a few naps! We also got internet, so Jason is back to work and I start back this week. Thankfully we can both work from home! We went to the Mall of America and it’s quite expansive! We’ll probably take the girls on rides another day, and we didn’t even come close to walking the whole mall, so at least we’ll have something for the kids to do in the upcoming weeks. Miia is starting to talk about missing home and her friends, so we have told her to write letters to her friends and she has been going to town. I think I’ll need a lot more stamps!

Kiira is making good use of her time out of the car seat to go from sitting to laying to rolling and scooting backwards. Her sisters model crawling for her and I have no doubt she will be on the move soon. I will probably have to add more bandaging to her knees and wrists at that point and I’m sure she will “scream” at us more for keeping her from getting into things, but keeping her wound- and infection-free for the next 2 weeks is my priority.

I have LOVED doing bandages right away in the morning. Though I’m only half awake, Kiira is very calm and we get through the changes quicker than ever. We are still only doing her hands and feet. Occasionally she will get a blister in other areas like in her armpit or behind her ears, but overall keeping her clothed prevents new blistering. The biggest issue is her fingers–with leaving them more exposed, only putting them in gloves, and allowing her to play and move more, they frequently blister. Plus, she is losing most of her fingernails–she has 4 left. Every time a nail is about to fall off, it starts with a blister in the nail bed. Despite how incredibly painful I think it should feel, it doesn’t seem to bother Kiira. We are so happy to be in MN and to have our BMT date. Finally our countdown can begin!

Prayer Requests:

1. Pray the donor passes her physical, and we can proceed with the BMT as planned
2. Pray that Kiira stays healthy and can withstand the treatment she will receive
3. Pray that we have patience with each other and adapt to our new home

Here is an account of our roadtrip from California to Minneapolis:

Day 1: And we are off to Minnesota! Our first stop is Twin Falls, ID. We got an apartment in St. Paul and we are still waiting on our donor’s physical, so we are taking our time driving from California. Kiira is staying healthy despite the sickness that has passed around our family over the past 2 months. We hope to keep her strong so she can make it through chemo as easily as possible! Our first day was a very long drive through Nevada. The scenery was beautiful, but lonely in that there were hardly any cars and no houses or towns. I’m not sure which I heard more: “Mommy?” Or “Are we there yet?”, but the girls were troopers! We arrived around midnight and took our time in the morning so that we could be rested for our next stop: Craters of the Moon, ID.

Day 2: Today we explored Craters of the Moon and drove through the surprisingly beautiful state of Idaho. We encountered rain several times–we wish some of it went to Ca! We had dinner in Jackson Hole, Wy and by the time we arrived to our hotel in Teton Village, it was another late night. We saw a marmot, bobcat, deer and elk, but we are still on the lookout for moose and buffalo! Kiira was so great all day and we find that doing her bandages early in the morning, makes the rest of the day much more pleasant. Taking this road trip is a great mental break from what we are about to put her through. We love exploring this country!

Day 3: Today we took a much needed day of rest. We slept in, ate a leisurely breakfast, and the kids played in the pool. We planned to drive through the Teton National Forest, but unexpectedly, Kiira threw up, so we had to give her a bath and redo the dressings on her hands. We drove for about an hour to get some beautiful shots of the mountains, but we decided to turn around and complete the drive tomorrow. Thankfully Kiira seems fine now, but again, we pray she stays healthy!

Day 4: Today we were overly ambitious in thinking we could do Yellowstone in one day. With the lower road to Old Faithful closed, we had to drive all the way around, adding about 2 hours to our drive. Then we added all the stops to see buffalo, sulfur pits, and waterfalls, and we didn’t even make it to Old Faithful so we found a hotel at the West entrance in Montana and will try again tomorrow. I’m not sure everyone in my car likes my “fly by the seat of my pants” attitude this trip (usually I’m a huge planner with an itinerary), but we’ve seen God’s incredible creation, had some family time, and we still have a warm place to sleep each night. Counting my blessings!

Day 5: We started the day with the goal of seeing Old Faithful so that we can continue driving East. It was so cold, but only had to wait about 25 min for the geyser to erupt. The kids just wanted to eat snacks in the car, so they cared less, but I was excited to see it. Then it started pouring so we started our drive to Cody, Wy. Unfortunately, or maybe a part of our adventure, the bison were slowly walking the roads today and added 90 minutes to our drive. It was really fun to see them so close though. Our drive through East Yellowstone was so different. We saw the devastation of fire and lots of snow. We exited Yellowstone and entered a new area of Wyoming that had lush fields full of deer, sheer cliffs, and huge ranches. We have 3 days left before we get to Minnesota, so I’m trying to soak in the landscape and relaxing days in the car, before our days are spent looking at hospital walls. Please pray that the donor’s physical comes through quickly and she is ready to go ASAP and that Kiira stays healthy in the meantime.

Day 6: We spent nearly all day in the car today. We encountered rain, snow, deer, more Bison, coal mining cities, and a fog-covered Mount Rushmore. It was pouring rain, but we went anyway, just to say we’ve been there. Unfortunately, we could barely make out a face. I think everyone is about done with this drive, but I’m not. Because I know what happens when we are and I’m not ready. EB scares me, but putting Kiira through a BMT scares me too. I know God opened these doors for us, and I have to believe it’s to make not only Kiira’s life better, but help be a part of a cure for those suffering with severe genetic diseases/conditions. I just need to feel that peace now! Did I mention that Kiira’s upper lip is fusing to her gums? I keep fearing for her fingers and toes but didn’t realize how quickly it can happen in her mouth. There are no bandages to try to prevent that! So I guess it’s best we get to Minnesota sooner rather than later…

Day 7: Today we crossed South Dakota and ventured through the majestic Badlands. It was quite impressive! We ended up in Sioux Falls and we will be in Minneapolis tomorrow.

Kira has started this really loud squeal to tell us she is hungry or tired. It is quite ear-piercing in the car, but her sisters are doing better as the week goes on and it’s been fun watching them come up with games to play. They have told us a few times that they want to go home, but we tell them we are headed to our new home. I’m sure it will be an adjustment for all of us! We do love the lack of traffic and 80 mph speed limit though.

Day 8:
We arrived in Minneapolis and to our new home! Everything is unloaded (in the pouring rain), and now we are taking a trip to Ikea, grocery store, and to pick up our generously donated couch from Prayers for Cole, a baby with HJEB, who started work up for his BMT today. The girls are excited about their new home!

Last night Kiira threw up again after feeding her rice cereal (the last time was several days ago). I don’t know if it’s EB related (throwing up food can be due to strictures), or if she is allergic to rice or if it was due to the milk I put in (although the first time was breast milk and second time was formula). So just pray it’s not EB related.

We have another prayer request: I heard from the hospital and they have been unable to reach Kiira’s 8 of 8 match. Since she is a complete match, Dr. Tolar wants to wait and keep trying to reach her. Please pray that she is willing and able to donate ASAP.

Thank you all for your prayers for us during our trip. I’m glad we have some time to get settled in before jumping into the hospital routine, so I know God’s timing is coming into play, but I just want to make sure the best match is available for Kiira to have the best opportunity of coming through this BMT.

  Kiira seems to respond really well to music. In the midst of crying, I turn on some music and she instantly calms down. It is helpful during bandage changes because I can sing her a song or put on her music, and the calming effect allows me to change her bandages more quickly. My husband and I have always enjoyed music as well (if only we had musical talent ourselves!), but there is one song that now affects me like no other. 

When you have a baby, you hear Brahms’ lullaby every time a mom moves from labor and delivery to the recovery floor. I think the intention is to celebrate the baby that goes with the mom, but in my situation, Kiira went to the NICU, not to the room with me, where she belonged. I had to hear this song all through the night and day, and I would get so angry about it. What about all the babies in the NICU?What about the moms who didn’t get to bring home a baby at all?  Thanks for the constant reminder that other people are having babies, most of which are healthy and get to stay with their mom to do skin to skin or breastfeeding or just cuddle them through the night. I still have yet to truly cuddle Kiira and she is nearly 7 months old! 

I was visiting a newborn at the hospital where Kiira was born and it felt oddly emotional. The feelings of anticipation and excitement of having a baby as we walked in that fateful day in October to get induced, to the feelings of fear, extreme sorrow, and anger about not bringing home our baby girl when we left, flooded my mind. And then I heard the song, the dreaded lullaby.  I’m beyond overjoyed at the new birth in our family, but that song. Ugh. I feel for the new moms who have to hear it tonight while they lay empty handed and I wonder if they will hate the song as much as I do. 

 We were sent a cd with children’s songs from a sweet woman who puts them together for sick children. I think it’s such a wonderful ministry because so many children love music. I hope to find a song or playlist to use during Kiira’s upcoming hospital stay that brings her comfort and joy. 

Kiira was approved by Kaiser and the BMT panel, so we are full speed ahead. The donor, a 48 year old woman from Europe, is an 8 of 8 match (markers they look for in the blood cells–the better the match, the less likely Kiira will reject it) and has been contacted. We are waiting for her to complete her physical exam, but estimate a date to arrive in Minnesota on May 25, which means we need to leave in a week to make the long drive from California. 

Usually I am a stress case, but I feel at peace about this. God has opened so many doors for us since December 30th when Kiira got assigned a hematologist who believed a BMT could help her. We have approvals, a complete match donor, a potential apartment and someone offered us a couch, an accepted offer on our house, my nephew was born before we leave, and so many other little things, have lined up perfectly. None of it is my doing–God has his hand on our family and I see the amazing ways in which He is working. 

That’s not to say that I’m “excited” about this trip. I mean who wants to leave their home, family and friends to live in a place where they have to put their child through something far worse than they’ve ever had to endure themselves? Not me! I didn’t sign up my daughter for EB and I’m not looking forward to putting Kiira through an extreme experimental treatment–I am looking forward to getting it over with so we can get back home with what we hope is a healthier baby. 

 While we wait to go, we have a slight issue with the gtube. It’s common, but Kiira has granulation tissue forming around the site, so we have to treat it with a steroid cream to remove it. Plus, despite Kiira’s chubby cheeks, she has been falling down the weight charts from 50% to less than 15%. Though this happens to many kids, EB kids never seem to catch up again because healing requires so many calories. I haven’t been overly concerned since she is happy and doesn’t seem lethargic or anything, but Kiira’s GI doctor said to get her to gain more weight do she will be healthy and strong to endure the BMT. We have to increase her intake by about 11-15oz/day, which means extra tube feelings. I’ve had to use the tube some when her mouth causes too much pain to eat, but we don’t use it regularly, so that will be something to get used to.

  Kiira has been active–rolling all around the house and just barely starting to scoot backwards. She is also eating rice cereal now and loves it! She still kicks as much and as fast as possible, so though she gets no time on her feet, she is keeping her leg muscles active! We also give her more freedom with her hands now so she can grab toys and of course she tries to pull everything to her mouth.

For now, we are just waiting for our final arrival date, packing up our house, and starting to say our goodbyes since we are leaving on May 19th. 

Prayers:

1. The donor’s physical goes well and they’re able to donate as soon as possible
2. Kaiser approves our housing and people have furniture to temporarily donate or sell us for the several months we are there. 
3. We all stay healthy as Kiira will soon go through chemo and lose her immune system
4. Kiira’s BMT is successful–she recovers quickly, has 100% engraftment and it cures her EB so that she can live out a normal life
5. Our family can feel daily rejuvenation and peace so that the stress of going through all of this doesn’t tear us down.