Another round

After a longer than planned wait (not complaining), we are back in the hospital for another round of chemo. Ethan's counts stayed low for a while, which is typical of him, and we had to wait an extra week to get his bone marrow tested. After a few days of anxious waiting, we found that 1% of his cells are still leukemia cells. We are getting close! The doctor did say that it is still likely that he will need to do even one more round after this one to get him completely into remission so that we can do the bone marrow transplant.

For this round, we are inpatient for 5-6 days. Then we will go home for about 3 weeks, barring a fever or illness, and then be admitted again for another 3-4 days for some more chemo. After that, we will wait for counts to come up so that we can do another bone marrow aspirate and see where we stand.

Ethan has been happy and has a lot of energy.  I am continually amazed at his patience and happy attitude. As long as we are honest with him, and tell him what is going on, he generally doesn't complain. He just does what he has to do and is a trooper about it. He is such an example to me of taking what life gives you and making the most of it. My favorite moment of the day is when we were headed out of his hospital room to pick out a toy, and he passed his nurse, and so casually (and out of the blue) said "I have a little bit of cancer" and just kept walking. It was so cute! We all got a laugh, and the nurse assured him that we were going to get that out of him!

We have been so blessed throughout this experience, and again and again I am amazed at the love and generosity that people show our family. This would definitely be a much more trying experience without those around us and our Heavenly Father and Savior lightening our load!

Home again!

We are home!  Ethan was able to come home on Tuesday, after pleading eyes towards the doctor.  His ANC (or immune counts) were at 200.  She said she usually likes them to be at 500, or at least close to it before she sends patients home, but I think she saw the disappointment in my eyes, and said we could come home after all!  She was confident he was on the rise, and he was doing well. 

It has been such a blessing to be with my family again, and to spend time with them this week.  I have missed being all together.  I have missed my soft bed, and all of the other conveniences of home.  Ethan is thriving and doing well.  If it weren't for his bald head, you wouldn't know anything was wrong.  He has been happy, and energetic.  It has truly been a blessing.

Ethan will go into clinic on Wednesday for a blood test and a bone marrow aspirate.  They will know within a couple of days whether he is in remission.  If he is in remission, he will prep for the bone marrow transplant.  If he is not, he will be admitted for another round of chemo identical to this round.  It is uncommon for the patients to go into remission in one month, so it is likely we will need to do at least one more round of chemo.  Of course, we are always hopeful that he will go into remission and shorten the process, but we are geared up to do whatever needs to be done.

In Relief Society (a women's meeting in the LDS or Mormon church, for those who don't know), we talked about having a positive attitude.  I have found many things to be grateful for throughout this experience.  I have a loving husband and children that are willing to do what needs to be done without complaint.  My husband has been such an amazing support, and strength to me.  He has taken on the household and duties with the children with amazing grace.  My kids have been awesome!  The older kids watch Blake morning and afternoon each day, and have done it willingly.  I have thought a lot about how this experience will shape them.  Merrill and my families have been so supportive, and have visited us, helped watch the kids at home, and stayed with Ethan while we do things with the other kids or go to our church meetings.  Our neighborhood and ward members have helped by bringing in meals, helping financially, watching the kids, and just being supportive in general.  We have had many offers of prayers and support from people we know from a distance, and even people we don't know at all.  And of course, we have a loving Heavenly Father who is always there to listen to us, and our Savior, Jesus Christ, who suffered and died for us so that our burdens could be lightened.  We have learned much throughout this experience, and I will be forever grateful to those who have shown us the love and support that we have needed at this time. 

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.

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!

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!

Take 2

Since we are starting into chemo treatments and all the craziness again, we thought we would start up the blog again to keep people informed as we have a lot of people asking questions, and it is easier to keep others informed in one spot rather than call with new information each time.

Yesterday we took Ethan into clinic for his regular chemo and check up that he was doing every 4 weeks. When they did his blood test, his platelets were low. They said it was pretty common, and attributed it to a cold he had had or just being on chemo in general.  They planned on checking his blood again in a week just to make sure they were rebounding. He also had a lumbar puncture where they drew and tested his spinal fluid. Our doctor called us later that night saying that they were worried, and they thought they had found leukemia cells in both his blood and spinal fluid. They asked us to return today for a bone marrow aspiration. Our wonderful home teacher came and gave Merrill a blessing, and assisted Merrill in giving both Ethan and myself a blessing. There were some amazing things promised us, but nothing specific to Ethan's diagnosis. 

After fasting all morning, Ethan had his bone marrow aspiration as well as another lumbar puncture.  Before he even went in, our doctors said they needed to chat with us after they did the aspiration. We knew it wasn't good news. The wonderful doctors did an amazing job of explaining to us that Ethan's cancer had in fact relapsed. He will have to undergo very intensive treatment for the next 1-3 months, depending on how he responds to the treatments. They said one month is pretty unlikely, but two or three months is more realistic. The goal is to get him into remission again. When he reaches remission, they will do a bone marrow transplant. This will involve more treatment to kill his stem cells, and then the transplant itself, followed by monitoring to make sure it takes. They said this hospital stay would be 4-6 weeks, barring any complications. Needless to say, the poor kiddo has a rough road ahead. 

He will be admitted on Monday for about a week. They did say, however, that more often than not, they will send you home only to have you come back again with an infection, and they end up staying about a month. We are hoping to be one of the lucky ones that will get to stay home :) Ethan will have another long road ahead of being cooped up. They said he will not be able to go out much from the time he starts treatments until 6-12 months after his bone marrow transplant. 

We are hopeful that all will go well, and Ethan will be able to fight off the cancer. He is an amazing little boy with such amazing spirit. He has matured so quickly, and is super obedient. I am so grateful that he has such a fighting spirit about him.

Again, I am so grateful for the help we have received, and the help offered. I don't know how we could make it without the help of our wonderful families and friends. Also, I am so grateful to our Heavenly Father for the blessings of peace and comfort that he offers us. I know without a doubt that he is aware of our family and aware of Ethan, and I am so thankful for that knowledge. 

While this isn't easy, we will buckle down and go again. We will fight until there is no fight left. 

Doing well!

It has been a while since we have updated the blog, so we just wanted to do a quick update.  Ethan is doing quite well.  He has regained his energy, and is running around and playing.  The only difference in him from pre-diagnosis, is that he is a little more tired, a little more clingy, and he won't eat!  He is doing really good, though.  We are still going in for weekly chemo treatments.  He has 2 weeks left, and he will be finished with his 2nd phase!  Whoo hooo! 

He has received blood a couple of times, and had a hard time with some of the chemo, but we have been greatly blessed that the chemo he really struggled with hasn't seemed to effect him as much this time.  We are SO grateful for that!  Ethan also got a new picc line again.  His old one was leaking.  They moved it to his other arm, which has been very confusing to him.  He keeps handing me and the nurses his right arm, and then searching to see where his line went before he remembers that it was switched to his left arm!  It's really rather cute!  He also developed antibodies in his blood, so it takes an overnight search to find a blood match for him now, where it used to just take a couple of hours.  This makes things a little bit harder, because if he needs blood, we have to go back into clinic the next day instead of doing it while we are already there. 

After this phase, Ethan will be doing a few hospital stays.  He will go in for 3-4 nights every other week for 2 months (so a total of 4 stays).  None of us are looking forward to doing the hospital again, but hopefully all will go well, and it will just be a few days!  The chemo they will be giving him requires him to be monitored, and to be on fluids. 

As a family, we are adjusting to our "new normal", and looking forward to Christmas.  The kids are so great to help with whatever Ethan needs, and they know more medical terms than any kid should, but it has all become second nature to them, and us! 

If Ethan's treatment stays as planned, he will be doing 6 more months of chemo before he goes into maintenance, where he will still get chemo, but only once a month.  He has to wait for his blood counts to rebound between each month, so we are hoping to be finished in July, and then go into maintenance.  Maintenance will last another 2 1/2 years.

As always, we have truly been blessed by both our Heavenly Father, and so many of you!  We are so grateful for the blessings we have received, and wish you all a very merry Christmas!