Our superhero!

Our superhero!
Our superhero!

Monday, November 4, 2013

An Attitude of Gratitude

Yesterday morning we were helping Jerin, my 11 year old, write his talk for Primary.  The subject was "thanking God in all things".  As we looked up some quotes from prophets, we ran across this one by President Thomas S. Monson:

"This is a wonderful time to be living here on earth. Our opportunities are limitless. While there are some things wrong in the world today, there are many things right, such as teachers who teach, ministers who minister, marriages that make it, parents who sacrifice, and friends who help.

"We can lift ourselves, and others as well, when we refuse to remain in the realm of negative thought and cultivate within our hearts an attitude of gratitude. If ingratitude be numbered among the serious sins, then gratitude takes its place among the noblest of virtues" (Thomas S. Monson, "An Attitude of Gratitude," Ensign, May 1992, 54).

I realized that I hadn't updated the blog recently, so I thought while giving an update, and in the spirit of November and Thanksgiving, I would have an "attitude of gratitude".  

Ethan finished his high dosage ARA-C with flying colors!  For those who don't remember, he got very sick with this chemo when he did it the first time, and that was with a much lower dosage.  He made it through all 2 weeks with only throwing up once!  I can't begin to tell you how relieved and grateful I was.  He lost his appetite, and didn't eat much, but for the first time, we actually used room service to order fries, corn, and cookies.  He ate about 1 fry each time, but considering he hasn't eaten hardly anything except yogurt and chocolate voluntarily over the last 2 years, this is HUGE progress for him, and I am so grateful for that!

I am ALWAYS so grateful for the wonderful techs, nurses, nurse practitioners, childlife specialists, doctors, and everyone else that make our lives just a little bit easier.  They are so patient and caring, and most of them have a sense of humor, which helps break up the monotony of the day in/day out of the hospital.  They truly care about our children.  One day Ethan was struggling being hooked up to the IV pole, and was crying.  One of our favorite nurse practitioners, Andrea, was in the room giving me an update on counts, etc.  She looked like she might cry she felt so bad for him.  She and Ethan get along really well.  She tried to comfort him, and made extra time later in the day to stop by and make sure he was doing ok.  She always says how much she loves Ethan.  We get told all the time by the nurses that they are fighting over who "gets" to take care of Ethan that day.  It makes us feel so loved and cared for, and I am so grateful for that!

After staying in the hospital for a few weeks, and waiting for Ethan's immune counts to come up, we were at our limit!  His counts were going down, and finally they stabilized.  On Friday, his counts were still at 0, but he next time they did the test on Sunday, they had made an amazing leap up to 500, which is the magic number to come home!  We were all thrilled that he was able to come home earlier than we had thought.  Heavenly Father knew we needed to have time as a family, and I am so grateful for that!

Now we are in the "wait and see" mode again.  Ethan will have a blood test tomorrow to see if his counts are to the point where they can get accurate bone marrow results.  If he makes counts, he will be going in on Wednesday for a bone marrow aspirate.  We should find out Thursday or Friday if he is in remission.  If he is in remission, we will begin the preparations for the bone marrow transplant.  If not, he will do some experimental treatments.  There is a possibility he will need to leave the state to do experimental treatments.  They have 2 treatments at Primary's, but a team across the country will look at his case and decide which treatment they think will work best for him.  Please keep him in your prayers that he may be able to be in remission!

As always, we are so grateful for our amazing families who have watched kids, brought us food, checked up on us regularly, and has offered to help where needed.  We are so grateful for friends and ward members who ask for updates, celebrate with us when we receive good news, and mourn with us when the news it not so good.  They have brought us meals twice a week every time we have been inpatient.  They have driven my kids to and from school.  They have sent gifts to Ethan to help break up the monotony of hospital stay. They have called and talked to me to let me focus on something different than blood counts, cancer, and worry for my family at home.  I am so grateful for my family who has been so selfless through all of this.  My kids don't mind that Ethan gets a lot of attention.  They rejoice with him when he gets a gift, or is able to come home.  They are so patient through all of it, even though this is extremely hard for them as well.  I am so grateful for a loving husband who does his best to ease my burdens, even though he is dealing with the same trial.  Who is willing to do whatever he can to make things easier for me, Ethan, and the rest of the kids.  I am so grateful for Ethan who has taught us to be strong, never give up, and face life and trials with an amazing attitude.  Last and most important, and I grateful to my Heavenly Father for giving me all of these blessings.  For helping me stand.  For answering my prayers when I am not sure I can make it through another day.  I am grateful for my Savior who suffered for the burdens that I carry so that I don't have to carry them alone.

Here are a few fun pictures from the last few weeks!

Off to the hospital!  Mickey Mouse is buckled in next to Ethan!

A ward member got Ethan this GIANT Mickey Mouse.  He was Ethan's pal throughout his hospital stay.  When I would leave the room, he would frequently say, "Well, and least I have a friend with me, Mickey Mouse"!

Pet Therapy dogs are always fun!

This is Ethan's fort he made out of the couch at the hospital and his blankets.  He would lay inside of it and watch Mickey Mouse on his iPad!

A friend let us borrow her fun toys, and Ethan made a creation!

Playing Candyland!

Eating his fries :)

Physical therapy brought a trampoline to play on!

Wednesday, October 2, 2013

High dosage ARA-C

The past few weeks have been a bit of an emotional roller coaster for our family. Ethan finished his 2nd round of chemo in his relapse. Our hopes were high that he would be in remission, and we would be able to move on to his bone marrow transplant. After the first round, his leukemia cells were down to 1%, so we were hoping the second round would take care of the last remaining cells. We came in for a bone marrow aspirate last week, and anxiously awaited the news. The following day, we got a call from Ethan's doctor. The news was not good. His leukemia cells were now up to 10%.  We were informed that Ethan would need to do the third round of treatment, and that if this round doesn't work, then we would need to do some experimental treatments. It was hard news for our family. The thought of the treatments not working was very frightening as a parent and a sibling. 

We were admitted this morning for chemo treatments. This treatment is supposed to be the hardest of all 3, which I believe. Ethan has done this chemo before, and he had a fever, and a lot of nausea. This time, it will be a high dosage form of that chemo. They said that nausea and fever are very likely. He will be rotating between 3 different anti-nausea med's every 2 hours. They watch closely for mouth sores and bacteria infections. The chemo can be hard on the corneas, so he will likely do eye drops every 4 hours, including the night. As the doctor put it, this is good and bad that it's such a hard chemo. Good because it wipes his cells out (hopefully including the leukemia cells), and bad because it is so hard on the kids. 

Once again, we have felt our Heavenly Father's love for us. Our wonderful home teacher came and gave those who wanted a blessing last night, including Ethan, and there were some amazing promises in those blessings. I know that this is happening for a reason. I know there is much that our family and myself personally are supposed to learn from this. I know that there is something bigger that is supposed to come from this that can't happen any other way. I am so grateful for the gospel and the peace that it brings to my life.

Thursday, September 12, 2013

High dosage methotrexate

We are back inpatient doing high dosage methotrexate. This consists of doing 1/2 hour of a very concentrated dose, and that is immediately followed by a less concentrated dose that runs consistently over the next 23 1/2 hours. This chemo can easily damage the kidneys and bladder, so they have to make sure he goes to the bathroom every 2 hours (the chemo is in your urine), including the night. If the chemo sits in his bladder for longer than that, it can cause problems. If he is unable to go, they give him extra fluids to MAKE him go. Needless to say, we are both a little tired this morning!

We will wait for his chemo to finish, and then we will have to stay until his methotrexate levels are back down to where they won't cause damage. They said we will probably go home Saturday.

After this, they will wait for his counts to come back up, and then do another bone marrow aspirate to see if he is in remission yet. If he is, we will start the process of the bone marrow transplant. If he is not, we will move on to the next phase.

As the doctor put it yesterday, "the next phase is a pretty big one." He will be doing two days of inpatient, then go home for 5 days, and then come back in for more treatment and stay until his counts recover, which could be 3-4 weeks. The part I dread about this phase is the chemo he will be doing, called ARA-C. He had a REALLY hard time with this one last time he did it. He had a fever, and was extremely nauseated. This time, the dosage will be even higher than last time. I am praying he is in remission, and will get to skip this round!

Other than this, everyone has been doing well. I know the other kids struggle sometimes with having the family separated, and fear of what will happen to Ethan, but I am grateful for a loving husband that reassures them that it is ok to be sad and afraid, and teaches them how to deal with their emotions.

I am also grateful to the Young Women in our ward who put on a yard/bake sale to raise funds for our family. The extra expenses of driving back and forth, and food at the hospital, etc. certainly add up, and that has been a HUGE blessing to us. I am so grateful for all the support we have been given emotionally, financially, and every other way! We have been truly blessed!

I am grateful again for the gospel. I have seen evidence that is too sacred to put on a blog that our Heavenly Father has spoken to our little Ethan in ways that a 3 year old can understand, and has shown him that He loves him, and is here for him. It does my heart good to know that he is being comforted through this trial that no one should have to go through, let alone a 3 year old.

Thank you all again for your love and concern!

Monday, August 19, 2013

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!

Sunday, August 4, 2013

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. 

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!

Thursday, June 27, 2013

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.