Day 1 to 13 of our bone marrow transplant

In bone marrow transplant world, every day is numbered.  The day of your transplant is day 0, and then you number every day after that.  Today we are almost to our 2 week mark at day 13, and boy, has it been a roller coaster!

Our first week went about as expected.  Ethan was sick. He got mucusitis, which are like cankers in your mouth, down your throat and into your intestines. Thankfully Ethan's wasn't in his mouth, but he had a killer sore throat!  He was nauseous and completely stopped eating and for the most part stopped drinking.  He is living off of IV nutrition and fluids. He hasn't had energy, and has been having some bladder and bowel issues caused by all of the medicine that is going into his body right now.  His breathing was a little labored because of the paraflu that he had before he went into transplant, and the mucusitis closing off his airway.

Our second week was more of the same, only more intense.  His breathing became more labored, and he was put on oxygen.  We tried both a mask and a nasal cannula, but neither were working well enough for him.

The regular oxygen ended up not being enough, so we were sent down to the PICU (pediatric intensive care unit).  There he was put on positive high air flow.  

They tried to use this:

But Ethan wasn't going for that.  He fought them because he didn't want that on, so they settled on this:

After 2 days in the PICU, we were sent back up to our room in ICS.  The whole time we were in PICU, he just kept saying that he wanted to be inpatient, meaning he wanted to go back to our room, so he was happy to be back in a familiar place with familiar nurses.

The day we left the PICU, he also started fevering.  They said this was normal at that stage of transplant, but he had a fever off and on for 2 days. The fever is gone now, so that is good.

It has been so hard seeing him so sick and in pain.  He does 2-3 anti nausea medications, and he is on a dildaudid pump for pain (he was on a morphine pump, but it was giving him headaches).  He has several antibiotics, and he has some medicines to help him go to the bathroom since all of the other medications make that hard to do.  He is also doing some steroids to help reduce the inflammation in his throat.  The steroids are tricky because they could contribute to graft vs. host disease, but they were necessary to help him breath.  

Today Ethan has been breathing better and feeling better.  He has a white blood count of 200, which his new bone marrow produced all by itself!  This is a good sign that engraftment is in his future.  We are hoping that things are on the uphill now, but time will tell.

We have spent many sleepless nights both at the hospital and home.  There was one night that Merrill didn't get to bed until 9 am.  Ethan needs a lot throughout the night, and there are always nurses and BEEPING (oh, the beeping) of the monitors!  Blake decided he wanted to crawl out of his crib, so we are training him to sleep in his bed, but he has had a hard time with the transition, so even when we are home, we still don't get a good nights rest.  We just decided that we will not plan on sleeping, and if we happen to get a few hours in, we will be grateful!

I can't even begin to tell you how grateful I am to everyone who has taken such an interest in our family.  I am so grateful for the support we get from our family, friends, neighbors, and even people I don't know.  We are truly blessed to have such wonderful people in our lives!  THANK YOU from the bottom of our hearts!

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.