Transplant day!

Finally!  The day we have been working towards since June!  Our morning started early.  Brayden and I got up at 4:30 to get ready.  We had to leave the house at 5:15 to get up to the hospital in time for Blake to check into same day surgery.

Blake had a lot of fun at first:

But then he decided this isn't all it's cracked up to be.  Doing vitals and putting THEIR pajamas on are not his favorite:

Going to the playroom waiting room to play made it all better though:

They gave him versed to make him relax, and took him back.  Then we waited.  Merrill was upstairs with Ethan, so I was grateful that Brayden was willing to come with me to help me.  He and Blake formed a special bond while we have been in and out of the hospital so much.

After about 1 1/2 hours, Blake was finished.  We went back to get him.  He was very, very sleepy!  We could move him around however we wanted, and this boy was NOT waking up!

After about 2 hours of waiting for him to wake up, they finally decided to wake him up with a cold wash cloth.  He woke up and enjoyed some nice applesauce.  

Then we headed to Ethan's room.  Brayden decided to veg on the hospital bed since Ethan was up playing!

After eating some lunch and waiting for a bit, we all donned our party hats.  It was time for a celebration!  They gave Ethan some Benadryl so he wouldn't have an allergic reaction to the bone marrow, so he was a little sleepy for his celebration :)

All of the available doctors and nurses came in to sing Happy BMT (bone marrow transplant) Birthday!  They are all wearing gowns and masks because Ethan has paraflu and rhinovirus.  They wear these to protect other kids from getting it too.

 They gave both Blake and Ethan gifts for Ethan's new "birthday", and to Blake for making his new birthday possible.

It is tradition for the staff to guess what day the transplant kids will engraft.  They make bets and put their money in the envelope.  Regardless of who wins, they give the money to Ethan!

My awesome hubby drew Ethan a lego batman on his whiteboard for him!

All of the staff signed Ethan's banner, and they hung it in his room:

Getting ready to hang up the bone marrow.  Double and triple checking everything!

This is Jordyn our nurse.  She is special to us because she started us on blinatumomab (our experimental drug that saved Ethan's life), and she was here to hang his bone marrow, which saved his life as well!

Here it is!  From Blake to Ethan in one day!  Blake's (and now Ethan's) bone marrow!  They do this just like a blood transfusion and put it into Ethan's central line.  This is the easy part for Ethan.

The cute brothers playing on Ethan's bed with daddy, or more like Blake hoarding all of Ethan's new cars :)

After an exhausting day, they both took a nap next to each other :)  I love them so much!

These are the t-shirts they gave Blake and Ethan.  Blake's says "donor", and Ethan's says "recipient".  We didn't get them on them before they fell asleep!

This is Blake's bandage on his back.  He has been such a trooper!

It has truly been an exhausting, wonderful, magical day.  I have been so worried about Blake having to go through this.  The boy has been amazing!  He was up and playing.  Climbing on things, jumping around, running, and laughing.  You can tell he is a little sore, but he is doing much better than expected!  He is our little miracle worker!  

Ethan has been up and down a little bit over the last week.  Today was a good day.  He was feeling well and having fun.

Now we just wait for engraftment.  The average for this is 21 days, but it ranges from about 2-6 weeks.  In the meantime, they will be watching for graft vs host disease, fevers, mucusitis and any type of infection or illness. 

I am so grateful to my Heavenly Father that we were able to do this today.  That the experimental drug worked.  That Blake was a perfect match.  That Ethan is doing so well.  That we have so many AMAZING people around us offering love and support in every way.  I have seen so many miracles and tender mercies throughout this whole process. 

Our miraculous journey

It has been far too long since I have update, and many things have happened.  Last update, Ethan was getting ready to go in for a bone marrow aspirate to see if he was in remission.  He was not.  His leukemia counts were up to 54%.  He was not responding to the chemo.  We were frightened, and unsure of what the future held for us.

We were told we would be doing experimental treatment either in Philadelphia, Denver, or here in Salt Lake City.  We were so grateful when the study we needed opened up here at Primary Children's Hospital.  The study is called Blinatumomab.  It is so cute to hear little Ethan say it!  The drug pulls your t-cells (which are immune fighting cells) over to the cancer cells like a magnet, so that the t-cells can destroy the cancer cells.  This treatment works in about 50% of those pediatric patients who participated in phase 1 of the study.  We were the 4th participant in the US and Europe who participated in phase 2 of the study.  The first at Primary Children's.  It has some crazy side effects, like seizures and neurological issues.  We were blessed that the only side effects we dealt with was a fever for not even 24 hours.  He did so well!  We were in the hospital for both Ethan's birthday and Thanksgiving, but it was a small price to pay for the treatment he was receiving, and the hospital made both occasions special.  The nurses let Ethan spray them with silly string at midnight on his birthday (he was still awake), and gave him some amazing gifts!  We took the kids up to celebrate on his Birthday, as well as grandparents, and my good friend Shersten.  It was a lot of fun, and turned out really great.  An organization called Icing Smiles made Ethan an amazing Mickey Mouse cake, and we had a special cancer mom start a facebook page for others to wish Ethan a Happy Birthday.  We got some really great videos and posts.  We felt so grateful and blessed!

Two weeks into treatment, Ethan did a bone marrow aspirate.  The final results were .06 leukemia cells.  This was AMAZING!!!  Two more weeks later, as he finished treatment, he was declared in remission.  This was truly a miracle to our family, and for little Ethan!  I could not sing enough praises for this drug.  Ethan was able to regain his energy, and acted like a normal little boy.  We have not seen this for over 2 years.  It was simply a miracle!

Now we are preparing for his bone marrow transplant.  He has completed many tests in the last couple of weeks, and has done 3 days of cranial radiation.  On Monday, he will be admitted to the hospital, and will do 4 days of total body irradiation twice a day.  Friday and Saturday he will do chemo.  Sunday will be truly a "day of rest" for him, and then Monday, the 13th, he will receive his bone marrow transplant.  His little almost 20 month old brother will be his donor.  Blake will go up early that morning do draw bone marrow from his little body.  This will require approximately 100 punctures to his hip bones.  Blake will recover, they will screen his bone marrow, and then we can head up to Ethan's room.  Early that afternoon, Ethan will receive Blake's marrow.  They throw a little "Birthday" party for Ethan, and give both Blake and Ethan gifts.  We are excited but nervous at the same time. It is hard to see little Ethan have to get sick again.  It is hard to have to put my sweet little Blake through so much pain on his brother's behalf.  All in all, I am so grateful that we have this opportunity.  That Ethan is in remission.  That Blake is a match.  That we even have the chance to do this procedure.  It is all truly a miracle!  I am so grateful to my Heavenly Father for these answered prayers!

Throughout this last month, we have been so blessed.  We have had many gifts and donations end up on our doorstep anonymously.  A sweet friend in Arizona who lost a child to cancer, threw a party in her daughters memory for Ethan where people donated funds.  This was a great surprise.  I had a sweet friend bring us walkie talkie's so that when our other kids are sick, they can stay in the basement and call is if needed so they aren't around Ethan to expose him to illnesses.  I had a great-aunt send us an amazing donation in the mail as part of their Christmas Jars tradition.  We were able to go on the Polar Express thanks to the Mascot Miracle Foundation where we met Santa and received presents.  It was truly a magical night.  We were able to attend The Piano Guys concert with VIP tickets.  So many well wishes, and prayers and concern for our family.  It has truly been an amazing journey!

Here are a few fun pictures from over the last few months.

The Piano Guys through a couple of wonderful friends, gave us VIP tickets to their concert.  It was SO much fun!  Ethan loved it!  We got to meet them after, but it was after midnight, so Ethan was asleep.  

Ethan getting his EKG

Getting ready to be sedated for his first day of cranial radiation.

Ethan's little mask he wears for his radiation.

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!

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.

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!

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.