Our superhero!

Our superhero!
Our superhero!

Tuesday, July 16, 2013

Bone marrow miracles

This has been a week full of bone marrow information! On Wednesday, we found out that Blake is a bone marrow match for Ethan. This is a miracle in itself, as only 30% of bone marrow patients find a relative match. Each full-blooded sibling has a 25% chance of being a match. With Blake being his only full-blooded sibling, he didn't have the best chance of finding a relative match. The other part of the miracle is that they test for 6 genes in the stem cells, and Blake is a perfect 6 out of 6 match! One more part to the miracle is the timing of Blake's birth. We found out 3 days before Ethan was diagnosed that I was pregnant with Blake. Had we found out about Ethan first, I think we would have waited to have another baby until things settled down. On the other side, we had tried for several months to get pregnant before it happened. About 2 months before Blake was born, Viacord sent information to our doctors with a new program that they do. They save the siblings of cancer patients cord blood for FREE for 5 years. Had Blake been born earlier, we would not have been able to save Blake's cord blood. Keep this in mind as you continue reading.

We met with the bone marrow transplant specialist today. He confirmed that we do have enough stem cells saved in the cord blood that they will not have to use Blake himself as the donor. It will be all cord blood. They also told us that because we are using cord blood, it decreases several complications considerably. Some of the complications that are more common in transplant patients, such as graft vs host disease, or the cells not grafting at all, are dropped down to 5-10% because the cord blood stem cells are immature, and ready to take hold on a person. They are also "spunky" so to speak, and will fight their way in. The cells are also more pure and have not been exposed to diseases or immunizations. The bone marrow specialist said it is rare to have a siblings cord blood because first of all, not a lot of people are able to save it, and second, if you do save it, it is only a 25% chance that it is a match. This is the only case that he can think of that he has done that they have enough cord blood saved that they don't have to use the sibling at all. It is truly a miracle to have these stem cells, and the timing of Blake's birth. He is our little hero right now. I know our Heavenly Father had this plan for us. I know He saw the big picture, and it is such a testimony to me that He is in charge, and that we need to trust Him.

The biggest hurdle now is getting into remission. He will have his bone marrow tested between each month of treatments to see if he has reached remission yet. We were told today, however, that his spinal fluid test came back negative of leukemia cells, which is good news and shows that his body is at least responding to the chemo.

As far as the bone marrow treatment goes, they will get him into remission, and then he will have full body radiation for about 6 treatments. Then they will do high dosage chemo, where they will entirely kill all of his existing bone marrow. Then they will thaw Blake's frozen stem cells and transplant them into Ethan. They should know about 3 weeks after if the cells have grafted and are beginning to produce blood. It is truly a fascinating procedure, and it's amazing the technology we have!

As far as other news, Ethan has had a fever for the last 5 days, and it was found that he has mild pneumonia. They are not super worried because they caught it very quickly, and got a handle on it fast. They immediately put him on antibiotics to treat it, and it seems to be getting better. Now we are just waiting for his counts to recover, and we will be able to go home for a week or so before we start the next round of treatments.

As always, I am amazed at the love and generosity of people. They seem to know what we need, even before we know what we need sometimes, and are so willing to give. I am also so grateful grateful to my Heavenly Father and the knowledge that He is aware of me and my family. My heart is full from the many blessings and miracles we have seen.

Sunday, July 7, 2013

Tender mercies

As I sit in our hospital room today, I can't help but think about all of the tender mercies our Heavenly Father has given us these last few weeks.

I was able to attend sacrament meeting here at the hospital today. That in itself is a huge tender mercy to me. I don't know of anywhere but Utah that would offer sacrament meeting in a children's hospital. I went downstairs a little nervous that I might be the only one there, but as the meeting began, there were probably around 100 people in attendance. There were a few nurses, and a few  people who work life flight using this as their break from work. There were people who had never attended an LDS meeting before. There were children in wheelchairs, or only in diapers wrapped up in blankets. People from all walks of life, but unified for that moment. The meeting was only 1/2 hour, and I think we heard 5 testimonies, but the Spirit was strong, and the normalcy of being in a church meeting and partaking of the sacrament was extremely comforting. I am grateful for this tender mercy.

After the sacrament, they had a representative come and teach Ehan a short primary lesson, and sing some songs. It was really sweet, and it made him feel special, and still included in church activities. I count this as another huge tender mercy!

Another tender mercy I have been thinking a lot about is how many people are so willing to help us. We have had so many family, friends, and ward member willing to help that our relief society president (and my good friend) told me that the only problem she was having is that there are so many people willing to help!  All of these amazing people are helping care for the kids, bringing meals to my family, visiting us at the hospital, helping with our yard, praying for us, and so many other things! We have felt the love and support from so many people, and this has brought about special moments and feelings of comfort and peace.

One of these special moments came by way of our primary. Last week, all of the primary kids made Ethan cards, and the presidency put together a little gift basket for him. As we read the cards sitting together in his hospital bed, he was so happy that all of the kids were thinking about him, and that they drew pictures of Mickey Mouse :) When we finished the last card, on his own, he started singing primary songs. We sang a few songs together, and then he said " Mommy, I have one more card from Jesus". I asked him what it said, and he told me it said "I love you. I will help you feel better. I love you, Jesus." This was such a sweet moment with my little boy. He has been so strong, and has gone through so much, but he rarely complains, and he has so much faith-even at just 3 years old. It is easy to see why we should all "become as a child".

I have felt my Heavenly Father's love, and His calming presence so much this past week. I am so grateful for the gospel, and the tender mercies that He is so willing to give us, and I am so grateful to each of you who help those tender mercies come about!

Thursday, July 4, 2013

Back in the saddle again

Here we are again! We got to the hospital Monday afternoon. Ethan had a chest X-ray, an echocardiogram, and an EKG. He did great besides having to take his shirt off for the X-ray. He was not a fan. We got up to our room and our doctor came to tell us that his port was out of place, and he might have to do surgery to get it fixed. They tried to do a power flush (push saline through his port really fast) to try to pop it back into place, but after yet another X-ray (this one much harder than the first), they found that it was still out of place. They gave us the option of either doing a new port, or a broviac. A broviac us basically the same thing as a port, but it doesn't sit under your skin. He will need this to do his bone marrow transplant anyway, so we opted for the broviac, hoping to save a surgery in the future. There is more care with the broviac because you have to change the bandage every 7 days, and flush the line daily, but we figured the benefits outweighed the inconveniences.

Tuesday before surgery, Ethan got a visit from Blake. The bone marrow team wanted Blake to come in for a blood test to see if they are a match. I felt SO bad for Blake. It is hard to bring him in and have him poked and prodded as well. Blake did AMAZING, though! He didn't even cry. the picture above is after his blood test with the teddy bear and wooden car they gave him. he was awesome, and I am counting that as a huge tender mercy! Blake will be the best match for Ethan because he is the only full-blooded sibling. We also have Blake's cord blood saved. Viacord does a program where they save the cord blood of siblings to cancer patients for 5 years. I am so grateful we have this. If they are a match, the cord blood has an easier time grafting because the stem cells are immature, and haven't attached to a person yet. We are praying they are a match, and should find out in about 2 weeks if he is a match.

After fasting from midnight until 6:00, Ethan was finally able to go into surgery. All went well with surgery, and he was able to start chemo using his broviac at 11:00 that night. He has had chemo for the last 3 days now, and is doing pretty good considering all his little body is going through. He has of course been pretty tired, and his chest is sore from the surgery, and his appetite that we have worked 2 years for has gone down the drain, but he has been in good spirits, and he remembers to tell everyone please and thank you. He is such a sweet boy. I am sure if I were in his position, I would be a bit of an ogre, but he has been amazing. 

As far as our treatment plan, it looks like we will be here for 3-4 weeks, then we can go home for about a week, and then we will be back up here again. He will do this for 2-3 times, or until he goes into remission, and then he will do the bone marrow transplant which will be a stay of 4-6 weeks without complications. I am so grateful to everyone for the help that has been given and offered. I see no possible way of this working without the help and prayers of so many people. A sincere thank you from the bottom of our hearts!