Reflections: Our journey with Ethan

As we near Ethan's bone marrow birthday (January 13), I can't help but reflect on where we were a year ago, and in turn, reflect on our journey with Ethan from the beginning.  Ethan was a special spirit that we as a family were privileged to take into our home for a short while.  I can't even number the things that he taught us in his short life.

I look back to when he was born, and the special role that he played in bringing our step family together so that it didn't feel like a step family. He was such a light to us, and we loved him instantly.

He only had a short 22 months before we took our bruise laden little boy to the doctor, calling a doctor friend ahead of time so she could vouch for me that I didn't abuse my child.

Ethan was diagnosed with high risk Acute Lymphoblastic Leukemia (ALL).  As a parent, you only want the best for your child.  You never want them to be sick or hurt or afraid - but to be told that your child would most likely be all three of these things for the next 3-3 1/2 years is almost unbearable.  You wish you could take this from them, but knowing that this is impossible, you forge ahead, understanding that this is the hardest thing you will likely ever do.

So you put a smile on your face:

The boys all shave their heads to match their brother:

And hospitals, chemo, and tubes become a way of life:

Then you hope, and pray that things will turn out in your favor. Meanwhile, you do your best to live a normal life.

You celebrate Birthdays and Christmases

And throw a HUGE party when he eats SOMETHING, ANYTHING!

We did our AMAZING Make-a-Wish

Then after a long 21 months of treatment and chemo, Ethan relapsed.  We spent even MORE time in the hospital doing chemo

And visiting with therapy dogs

Building forts in the hospital

Finding ways to entertain ourselves

Hanging out with his "best friend" Mickey Mouse

and his other best friend, Piggy

Doing physical therapy

And music therapy

Then after finding out the chemo wasn't working, we did a study drug, Blinatumomab, which worked!

Then we did cranial and full body radiation, and then a bone marrow transplant with sweet little Blake as his perfect matching donor!

2 months later, we got the bad news that Ethan had relapsed again....  We tried our favorite drug, Blinatumomab, but this time it didn't work.

 Our last option was to head to Seattle for another experimental treatment, a t-cell therapy treatment.

The therapy didn't work the first time, so they offered to let us try again a second time.  Unfortunately, the chemo they do beforehand sent him into a tailspin, and we almost lost him. He spent about 3 weeks in ICU before he was released to the cancer floor again.

Ethan's kidneys shut down, and we couldn't do the t-cell therapy until they had recovered. We waited and waited. In all, we were in Seattle for 3 months. The kidneys never recovered in Seattle, but we decided that it would be beneficial to bring Ethan home to be with his family while we continued dialysis and waited for his kidneys to recover. We were so glad to have Ethan and daddy home!

Being home was good for everyone. Ethan's spirits skyrocketed. He regained his strength and was able to walk and play again. We got some really good family time in.

Ethan's kidneys were recovering but very slowly. Unfortunately, they recovered too late to go back to Seattle to retry his treatment. His leukemia was out of control. About a month after we got back from Seattle, we were told there was nothing else we could do. Ethan would be put on hospice. We were told that he would have anywhere from a few days to about 8 weeks left. Most likely it would be somewhere around 3 weeks. Ethan had talked about Halloween for months, and had talked about his Birthday and Christmas since his last Birthday and Christmas, so what else could be done but to make sure he got to celebrate those holidays one more time, and make some family memories? We found out on October 15th that Ethan's fight was almost done. Our ward chipped in as they had for the past 3 years, and each had a role to play in our celebrations with Ethan.

On October 21st, we celebrated Halloween. Our neighbors bought candy, dressed up, and we went trick-or-treating. KSL heard about our story and was there to cover it.

 October 22nd, we decorated for Christmas!

 Others decorated throughout the week too!

Thursday, October 23rd, we celebrated Ethan's Birthday a month early (his birthday is actually November 24th).  By this time, Ethan's story had spread throughout a lot of the world!  Fantasy Con held a parade in his honor.  Complete with a bagpipe, police cars, and Fantasy Con characters!  Ethan had had a REALLY tough day that day.  He had spent most of his day at Primary Children's.  He was in so much pain that they gave him a Dilaudid dose (equal to morphine) to help ease the pain, as well as some extra doses of oxycodone.  As we went outside to celebrate his Birthday and watch the parade, he lit up.  I am sure he was still in pain, but for that moment, he forgot just a little bit.  He was so happy and excited!

 

Next would come our Christmas Eve on October 24th.  We had Santa arrive in a fire truck.  We went for a ride around the neighborhood in the fire truck and then Santa took us inside for some private family time.  He handed out gifts, and joked around with the kids, but my most favorite part was when he sang Christmas carols with us, ending with Silent Night.  Mrs. Claus and I had a hard time keeping our tears in check.  It was beautiful, and peaceful, and the Spirit was so strong.  It will be a moment I will always treasure.  Then we came outside to a yard full of carolers with candles and a live nativity.  We then took a wagon ride around the neighborhood to look at the Christmas lights our neighbors had put up 2 months early to let sweet Ethan celebrate. It was magical!

 We celebrated Christmas on October 25th. We had many, MANY gifts from neighbors and people we didn't even know. It was truly amazing!

 We also had the Torres family come that day.  Diego and Gabriel gave Ethan their entire stuffed animal collection.  What a sweet family!

Ethan made it through Christmas morning before he started to get really sick.  He had a fever of about 104 all weekend. 3 days after our "Christmas", on October 28th, Ethan passed away. 

His viewing was on Halloween, October 31st.

His funeral was the following day on November 1st.

As I reflect back on Ethan, and our journey with him, there were many, many, hard things.  To name a few, it is insanely difficult to see your child suffer. It was hard to be split into two different places as a family.  There were long, long days in the hospital.  Even when we weren't inpatient, our clinic days were long and hard - sometimes up to 11 hours.  When we weren't in the hospital, Ethan's immune system made it so that we couldn't go out and do many things.  We missed out on a lot of things with the other kids, and they had to sacrifice a lot.

I have always said that the blessings outweigh the trials, and this was not an exception.  As I have reflected the last few days about the last 3 years, I can't help but notice the blessings.

We have had AMAZING nurses and techs:  Irish, who would always stop by, even when he wasn't our nurse, to smell Ethan's "stinky feet".  There was Joyce and Kathy, who always went the extra mile to make all of us happy.  There was Eric, who we dubbed the "night ninja", because of how quiet he was in the night. We knew when Mitch was our nurse, we wouldn't be lacking on adult conversation, because he would take the time to come and chat.  There was Jordan, who was our nurse who hung both our blinatumomab, and Ethan's new bone marrow - both of which gave us extra time with Ethan.  Aubrey was the nurse in charge of our case when Ethan passed, and she spent time crying with me as we made hospice arrangements.

We can't forget Dylan, who was Ethan's home health nurse.  Dylan was one of Ethan's best friends.  Ethan wouldn't let anyone change his dressing besides Dylan. He even had to come to our house once to take a band aid off, because it didn't hurt as bad if Dylan did it.

All of these nurses and many more, were always so patient, and would laugh at Ethan's stubbornness.  They became his friends in every sense of the word.

We had some amazing doctors, nurse practitioners, and fellows, both on the oncology and bone marrow side.  They always took the time to listen and answer questions, no matter how many we had, or how absurd they seemed, or even how many times we had asked the same question before.  "Dr. Jack" would sometimes text us late into the night answering quetions, or sometimes on his own just because he knew we had had a hard day.

I think of our amazing social worker, who was always available, and took time to truly nurture and care for our family.

There were many other cancer families, who reached out and supported us, answering questions, dropping our chemo off for us at the drop station, or just understanding.

I think of the many, many people who have donated blood and platelets.  I would guess Ethan had at least 100 blood and platelet transfusions, and sometimes they would have to call people in to specifically donate to Ethan because he had an antibody that was hard to match.

I think of the Rendon's, who helped us get tickets more than once to fly to Seattle and back.

I think of the pharmacists, who knew us by name, and would always take care of us.

I think of the fundraiser's: Smith's root beer float party, an online auction, donations sent in the mail or dropped off on our doorstep, Cyprus Credit Union, and Go Fund Me.

I think of our family support. My parents who lived with us a good part of the last year to take care of Blake while we were in the hospital.  My sisters, who babysat, cleaned house, and offered support in any way we needed.  My brothers, who would text just to say they loved us.  Merrill's parents, who put in an air conditioner so that Ethan could be comfortable, and helped in many, many other ways.  Merrill's sisters who also cleaned, brought meals, caught up our blog for us, and offered us support.

I think of the ladies who came to watch Ethan and/or Blake for us, sometimes learning nursing skills themselves, so I can run to the store, go visiting teaching, or take another child to the doctor.

I think of the many organizations who did things for us quietly, and without fanfare: The Mascot Miracles Foundation, with Felix Falcon, who volunteered to go trick-or-treating with Ethan.  BYU, who came and played basketball with the boys at our house and invited us to a practice and game.  ReAl Salt Lake, who came with Leo the Lion and Luke Mulholland after Ethan passed away to bring us a signed jersey with Ethan's name on it.  Luke invited the boys to play Fifa 15 with him, and we watched as he played himself in a video game for the first time!  Also, all of the many other organizations who have done special things for us throughout the last 3 years.  They have all truly made a difference.

I think of the many people who we heard from throughout the entire world who offered us their love and support, sent cards and packages in the mail, or dropped things off at our home.

I think of the hundreds who sacrificed their time to make our last week with Ethan one that we will always hold dear.

I think of our neighborhood, especially our ward family, who were there for us every step of the way.  They offered love, support, meals, financial help, babysitters, and any other help we needed throughout the entire 3 years (and more).

People often ask me how we did it.  I say that we didn't do it alone.  We had a whole army here to back us up.  I have learned so much about compassion, love and charity by watching these people serve our family in so many ways.  I can never adequately thank them for all they have done for us.  I hope they all know how much it has meant.

Looking back our journey, we had so much hope:  Hope for health, hope for a cure, hope that the next treatment might work and save our little boy, hope for Ethan's future and our future with him.  Now we STILL have hope - just focused in a different direction.  We have hope through our savior's atonement and ressurection.  Hope of eternal life and eternal families.  This hope won't fail.  This hope is built on faith in knowing that our Heavenly Father is aware of us.  Knowing that our Savior suffered and died for us so that we could live again, and knowing that our family will be together again, that we will see our sweet Ethan again, and that we will have a joyous reunion that day.  I am so grateful for this hope, this faith, this plan of happiness.

FAMILIES ARE FOREVER!