Engraftment and HOME!

We made it!  Ethan's new bone marrow engrafted on day 16.  Average with a sibling donor is day 19.  They gave him neupogen, a drug that helps your counts rebound faster, to help him get things going a little quicker.  They were worried about the paraflu that he had before going in causing more problems.  Right around engraftment, the mucusitis started going away, and he started to feel a little better.  They started to wean him from his narcotics, and started moving over from IV medicines to oral medicines.  This can be a little tricky with a little tummy that doesn't feel well, and with a tummy that hasn't eaten in weeks.  Overall, he did a really great job.  Medicine is still an issue.  It takes us about 2 hours each morning and night and A LOT of persuasion to get all of them down, but it does seem like it is starting to get a little easier.

This is his morning dose of medicine.  The two cups are mouth care, which he doesn't have to do at home anymore, but did 3-4 times a day in the hospital:

This is what we picked up from the pharmacy before we came home.  Apparently, Ethan was on the low end of medicines, compared to most bone marrow transplant kids.  I can't imagine more than this!

He saw a picture of a fellow cancer fighter when she got her bone marrow transplant with all of the pumps on her IV pole.  He was so excited to start getting more and more pumps!  Unfortunately, when he got up to his max, he was too sick to care anymore.  It was nice to see the pumps disappear one by one as we drew nearer to our coming home.

We got quite the list of cleaning that we have to do each day and week.  In order to get the house ready for Ethan to come home, we had to do a deep cleaning to eliminate as much dust and germs as possible because his immune system isn't working to full capacity, and won't for quite some time, so this is something we will have to maintain for a while as well.  These fabulous family and friends came to help me get it in order.  We literally cleaned the house from ceiling to floor.  The ladies were wonderful! My house has never been so clean!  And awesome Charles had the dirty job of cleaning all of the walls and ceilings!  I could never have done this without them!

At the end of treatment, it is tradition for cancer kids to "ring the bell".  They make it a special thing for the family, and the cancer child.  It is a huge milestone, because it means that from here on out (minus a few lumbar punctures with chemo in the spinal fluid), he is finished with actual treatments.  Now it will just be healing!  This is a video from his bell ringing ceremony. My parents were unable to make it because my dad just found out that he has prostate cancer, and had to go get some tests done himself on the day we rang the bell, but Merrill's parents came, and the kids came.  It was a lot of fun!

We came home 25 days after his transplant.  With the week we were in before this for radiation, this added up to 32 days of being inpatient.  It was such a wonderful thing to be able to come home and be together as a family!  The kids all wanted to be by Ethan.  I looked over, and this is what we saw.  Everyone as close as they could be to him.  It was so sweet!

These are the fun pictures of Ethan and Blake in their Donor and Recipient t-shirts.  Blake's says "bone marrow transplant donor", and Ethan's says "bone marrow transplant recipient".  They are so sweet together.  

And just a few more pictures from our stay!  Ethan grew quite attached to his blue throw up bags.  He has a list for Santa Claus, and these throw up bags with their holder (can't forget the holder) made it onto the list.  Not sure if it is funny or sad.  Probably a little of both!

Ethan LOVES legos!  We did hours and hours of building and playing with legos!  

Ethan with Daddy.  Not feeling so well at the moment.

I am so grateful for the many, many, MANY wonderful people we have in our lives.  There is not a day that goes by that I don't think of how much we have been blessed with so many people who help us in SO many ways!  This is not something that would easily be done alone, but I have never had that worry.  I can literally make one phone call, and have many helping hands ready to assist.  That in itself is a miracle and blessing.  

Sometimes I wonder- if I could rewind time, and somehow have the power to choose life without cancer, would I do it?  I can't say for sure.  This has definitely been (and still continues to be) a long, hard road.  But one thing I do know for certain, I would never have wanted to miss out on the things I have learned along the way.  I have learned of the innate goodness in people.  I have learned to never judge others because you don't know what they have going on in their lives.  I have learned what it feels like to be burdened with care greater than you ever before imagined, and have learned empathy.  I have learned even more personally the love of a loving Heavenly Father.  I have learned more personally how the atonement applies to me, and not only to me, but my loved ones.  I have literally felt my burdens lifted.  I have felt angels surrounding us.  I have truly seen miracles.  So while this road has been long and hard, there have also been many, many good things.  Things I could not have learned any other way.  For that, I am, and always will be grateful.

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.

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.