We wanted to post more about our journey since Eli’s graduation, but we first were busy with preparations, then with family and friends, then with napping. We have received so much support in our mourning and we have really delighted in visiting and reconnecting (and sometimes connecting for the first time) with so many people who care.
Some people have asked that we share some parts of the funeral services a bit more broadly. I feel context is important to the messages we wanted to share in that service so I am trying to reproduce the impossible here as much as I can. Please forgive my poor attempts. In many ways, “you kind of had to be there.”
The viewing was a well organized jumble of things about Eli that made our hearts ache and tears fall. It was a time of gratitude and things about Eli that made us all laugh. Maybe in another post we will go into that.
The funeral itself started about twenty minutes late because we just didn’t want to stop visiting with people. We are so grateful for everyone who came. We are sorry we couldn’t spend more time with each of you.
Here is the tri-fold program from the funeral itself. The “THIS IS VICTORY” (a quote from Eli a few weeks ago, see Elaine’s post “Death in Slow Motion”) page was on the front, and Eli’s testimony, which he was graciously invited to share in one of our church meetings a couple of months before, was on the back.
The music was beautifully done, and so perfect for how we felt. The prayers were just what we needed.
The text of Elaine’s Life Sketch and my part are included below. I don’t have the text of the Bishop’s or Stake President’s remarks. They were excellent as well, and reminded us of some very tender moments. They helped bring a spirit of inspiration to the meeting.
Life Sketch of Eli by Elaine:
Wednesday night, Eli and I were watching a movie while the other kids were off at their activities. He started having a hard time breathing and he was very, very tired physically and mentally and he was ready to die. He asked me, “Can I die tonight? I want to die tonight.” I told him that I could give him some medication that would help him rest and be comfortable. Then I asked him if he wanted to pray with me and he said, “Yes.” I knelt down next to Eli and I prayed for him to die that night so he could finally be at peace. He and I talked about how we had been fighting for so long and hard. He said, “Yes, we have. We are champions!” It was time for him to lay down his warrior’s sword and graduate from this life. An hour later he passed peacefully in his sleep, while his Dad, little brother and sisters sat next to him on the couch. My child’s prayer was answered.
On the night of May 13, 2008, about 11:30 pm, I was in labor and thought that my baby wouldn’t be born until after midnight, since I didn’t feel like much progress was being made. About 15 minutes later, Elijah was born at home. He surprised me that, just when I thought it would take forever, his birth was over. It turned out that Eli exceeded at surpassing expectations.
He was one of my early crawlers and explored everywhere as soon as he could. He has always been energetic and full of curiosity, and wasn’t afraid to talk to grownups. He also was full of wisdom, empathy, and kindness. When he was 4 years old, we were visiting my sister Mayreen in southern California and she fell in love with him as she took him with her on errands and bought him treats. When he talked to her daughters Kate and Becca, he called them “Cake” and “Beccup”.
When he was five, Adam and I went on a trip to Panama without the kids. When I called home to say hi to the kids, I was talking to Eli and told him we were visiting the jungle. He asked, “Did you see any monkeys?” I did not, but I brought him home a little stuffed monkey.
Eli wanted to be an inventor when he grew up. He loved taking things apart and trying to figure out how to they worked. One year Adam gave Eli a printer to take apart. After that, I kept finding printer pieces all over the place (I probably still have some). One of the things he wanted to invent is something that does the opposite of what a microwave does. So, instead of heating food up, it would cool it down. He called it a “megawave”.
With schooling, he didn’t like having to worry about which letters should be written in upper case and which should be in lower case. I tried to get him to write things correctly, but spelling and writing were not his strength. When writing notes to Aunt May-May, he spelled Aunt “A-N-T”. Since he already had won her over as an adorable 4 year old, she proudly signed all her letters to him using his spelling of aunt. I eventually stopped trying to correct his capitalization when he signed his name, so if you have something he signed, you will see that it has a capital E, capital L, and lowercase i.
In September of 2018 at age 10, he found a bump in his left pelvis that the doctor thought was a calcified lymph node. He told us to watch it and if anything changed to come back. His Grandpa Lloyd died a couple weeks later on October 1st. A few weeks after that, Eli’s left leg was swollen, which was the same side as the enlarged lymph node. Something had changed, so we took him back to the pediatrician, who then sent us to Primary Children’s hospital, where he was diagnosed with a rare pediatric cancer called Rhabdomyosarcoma. We later learned that it was the equivalent of stage 4, which meant that the 5 year survival rate was about 8-10%. This was devastating news for us, but he took it like the fighter he was and started treatment November 2, 2018. The only concern he expressed was whether it was a cancer that could be passed on to his children, since he didn’t want them to have to go through this.
One day, not long after he started treatment, Eli and I were driving to the store, talking about the cancer. He told me then that if he could prevent all other children from dying from this cancer, he was willing to die for them. Little did I know that day that he would later have the opportunity to donate fluid and tissue to further the development of treatments for his cancer. Last month, after his 3rd chest drain was placed, the fluid we drained was donated to Children’s Cancer Therapy Development Institute and they were able to start a few cell lines of his cancer that will be shared with researchers around the world who are working on better treatments. The day after he died, tumor tissue was removed from his body for research. Who knows, maybe his death will save the lives of other children in the future like he wanted?
Eli went through a year and a half of treatment, including chemotherapy, surgery, and radiation. During which, he collected friends and admirers at the hospital and through our blog and on our various trips. He was loved by the nurses, doctors, and other staff at Primary Children’s Hospital and Huntsman Cancer Hospital, and they enjoyed it when he came for treatment since he was so full of life. In fact, last spring he had broken a finger while testing his gravity offset device. After getting an xray, his surgeon, who we hadn’t seen for awhile, had his nurse schedule an appointment for Eli. When we went in, the doctor looked at his finger, said, yes, it’s broken but it will heal fine, then admitted that he just wanted to see Eli. They spent the rest of the visit looking at a PET/CT that Eli had earlier that day and Eli wrote his own radiology report since the actual report wasn’t going to be ready until the next day.
There was no evidence of disease from May of 2019 until May of 2020. Eli had his port out on May 4th 2020, which had been used to administer his chemotherapy. The neighborhood celebrated and we surprised Eli with a parade in his honor. Two weeks later, shortly after his 12th birthday, the cancer was back and his chance of survival had dropped to 0% and we were told, while we were sitting in a resort on the Oregon coast in a virtual meeting with his doctors, that Eli had 2-12 months to live. When we told Eli, he cried a little, then said, “It’s okay.” Later, he said he made peace with his fate, and he continued to be the fun, adventurous young man he was.
Our family, friends, neighbors, and strangers rallied around us and helped us provide adventures to last a lifetime. Make-A-Wish built him a workshop for his inventing. We went on a variety of trips so he could do some of his favorite things, like digging in the sand on the beach, playing in the ocean, exploring the jungle, and swimming in pools. When we were in Florida, he brought his satchel, duct tape, and paracord. I bought him a shovel while we were there and he wanted to bring it back on the airplane with us. I looked at his suitcase, full of his gear, plus a coconut he’d collected on our adventures. I looked at Eli and said, “I don’t think TSA will let a shovel through security.” I got smart and bought him foldable camping shovels for his birthday.
Meanwhile, we did various treatments that helped slow down the cancer and we continued our adventures. From traveling first class to Cancun (thanks to my sister Jennifer’s skymiles) to driving up and down the west coast, we spent time playing on the beach, exploring ancient ruins, feeding manatees, visiting family, boating with grandpa, hiking through the redwoods, and swimming at Ant May May’s house. One nefarious adventure we had was on the California coast. We had spent the day at the beach and were heading back to May May’s house. Eli had been asking about getting a palm palm leaf, so when we had loaded everything up, Ant May May and Eli found a palm tree and obtained one of it’s fronds. He was able to check that off his bucket list.
In May of 2021, Eli turned 13, almost a year after his relapse. He had exceeded expectations. However, the cancer began to get very aggressive and things didn’t look good. We went to Houston, after another trip to the west coast, and he participated in a clinical trial. We don’t know if it helped slow down the cancer, but we met some amazing people there and Eli continued to make an impact in the lives of those we interacted with, and they made an impact in ours.
At the end of July, after a detour to Louisiana to visit friends, we headed home and prepared to try chemotherapy again to try and buy more time. This time, though, it was too late. His lung collapsed and his cancer was growing like crazy and he was told he had weeks or 1-2 months left to live. I told my dad that it was time to build the casket. We did a few things to address the lung collapse and some painful tumors, but his condition continued to worsen and he was admitted to hospice for the first time. Our new super car friends did a tour past our house to bring a little joy to what we thought would be Eli’s very last days, but Eli wasn’t done yet. He started to improve and we threw in a few more adventures including making friends at the Renaissance Faire and FanX (a comic convention), taking a quick trip to Disneyland, visiting our friends in Vernal, and starting a leather working apprenticeship with Jim at This is the Place Heritage Park. All the while, he did his best to fulfill his responsibilities as a deacon at church.
As Eli’s health declined again, we adapted his activities to his dwindling energy levels and physical limitations, but he still continued to do things, meet new people, and generally live as full a life as possible. We particularly enjoyed daily visits from bunnies during the last week and a half of his life, especially the one he named Dustin. He also had a last minute Christmas light tour, courtesy of our wonderful neighborhood and the fire and police departments. That was the last time Eli was able to leave the house. He graduated this life on Wednesday, November 17, 2021 at 9:16 pm, after fighting cancer for over three years. He was 13 years old. It was a privilege to be his mother and I felt surrounded by angels as I prayed for his release from this life. He is at peace.
Before cancer, the worse thing he dealt with was recurring nursemaid’s elbow (that’s when a child dislocates their elbow–I got very good at reducing those dislocations). I would never ask to deal with cancer, but we experienced an abundance of love, mercy, kindness, and generosity throughout Eli’s journey, and I’m glad to have been surrounded by angels, both heavenly and earthly ones, who enabled us to get through this. I learned through this experience that God loves me and my family more than I ever realized and, time and time again, He made sure the right people were in the right place when we needed them. Your service means more to me and our family than words can tell and I thank my Heavenly Father for you. In the name of Jesus Christ, amen.
We wanted this to be as kid-friendly as we could, so we are trying to keep it short. But the time I have isn’t nearly enough to share what is in my heart. You are getting a very cut down version.
Every parent, from the moment they discover they are going to become a parent… and pretty much forever after, has experienced a swirl of worries about their children.
It often starts with concerns over providing for their physical needs: food, clothing, shelter. It quickly develops into deeper worries, like, “How am I going to teach this little child to be a good person? To share their toys, to be gentle and kind, and to really love others? To be responsible and to be resilient in the face of life’s inevitable cruelties and unfairness? To stand up for what is right even when it may be unpopular?” And on and on.
–Because, it isn’t enough for any parent to have just a well fed, protected child, that gets the best life has to offer. Every parent has a deeply rooted desire to help their child develop into something more, something greater. We want our children to become ..in themselves .. the sources of the best that life has to offer.
When Elijah was much younger, probably five or six, we went to a park near our home. As the other children played, Eli started swinging to cross the monkey bars, and being very young, couldn’t reach the next bar. He couldn’t go back either. So he cried for help. His mother and I were already close by and my first and very strong impulse as a parent was to simply rescue him. To lift him gently to the ground, hug and reassure him, and then send him back to his happy play.
But there was another parental part of me, admittedly much smaller and less intense, that thought, “This could be a good learning opportunity.” I looked, and he was less than a foot and a half from the ground, and I thought, “That’s not really far enough to get hurt. And the wood chips are pretty soft here. He can drop and he will learn to be less afraid in the future.” That lesson seemed valuable.
So we told him to let go and drop, assuring him it wasn’t far and that he would be OK. Well, this idea terrified him and he more desperately pleaded for help.
The bigger parental part of me surged with compassion and a strong desire to rescue him from his aching arms and terror and made me doubt the wisdom of letting him fall. “What ifs” began to plague me with thoughts of sprained ankles and broken legs and concussions and thoughts of “What kind of parent lets his child suffer like this?” and “Just save him already!”.
But that other part that wanted him to grow and face life with a little less fear and trepidation began to reason with my protective side. If he did sprain his ankle, I thought, or break a leg or whatever, we’ll just take him to the ER and it will still be a valuable learning experience. It will be good and he will learn things he wouldn’t otherwise learn.
So his mother and I continued to encourage him to just let go and drop, that he would be OK.
He couldn’t hear us over his tears… or at least couldn’t understand what we were trying to teach him in this brief moment. He was afraid, and understandably so. He had never experienced something like this and it was scary. He didn’t have the past experiences to measure the risk and rewards or to see the big picture or the potential futures.
Seeing him like this was painful for us, but that deeply rooted parental desire to give him the chance to grow and develop won out… just barely. And we chose not to rescue him in that moment.
And eventually, and it felt like an eternity and was heart-wrenching every moment, his little arms aching so much he couldn’t hold on anymore, he let go and fell.
He tumbled into a seated position and looked a bit dazed, then looked at us.
“Dad!”, he exclaimed in amazement and disbelief, “I didn’t die!”
Instantly, that parental part of me that wanted him to be more saw another growth opportunity and blurted out, “Yeah! Do it again!”
Well, another look of terror crossed Eli’s face, but only for a moment, and a big grin immediately replaced it. He ran around the play structure, climbed onto the platform, reached out to the monkey bars, swung out and held on for a moment. I saw that fear cross his face again, but to his eternal credit, he mustered his courage again and dropped. He fell to the ground and laughed.
“Again!” I said. Eli again climbed the platform, swung, dropped, and fell again. And again and again, until he lost interest and moved on to other games.
I recognize I took a risk that day. It might not have gone nearly as well as I hoped it would. But, as a parent, I felt like I knew Eli well enough and the situation well enough to give him an opportunity. And he took that opportunity and turned it into something precious. Something he learned and grew from. Something that helped him become more for the rest of his mortal life and beyond.
God, our Heavenly Father, loves us far beyond our current understanding and He knows us perfectly. He sees so much greatness in us that we just can’t wrap our mortal minds around it yet. But He is teaching us and giving us precious opportunities from moment to moment.
Elijah’s cancer has been one giant moment full of infinite opportunities. Yes, it was terrifying and hard, painful and sickening, heart-wrenching and unfair in the worst way. It was also courageous and tender, strengthening and inspiring, heatwarming… and unfair but in the best possible way. We have been blessed in ways far beyond anything we ever deserved, sometimes directly from God, but mostly indirectly through everyone here and so many more that couldn’t come.
Because Elijah, despite his imperfections and failings, was faithful and dedicated to God, and through repentance always tried to be and do better, the grace of Jesus Christ transformed his spirit, little by little. Because he was on the right covenant path, pointing in the right direction when he passed out of this mortal world, that transformation will continue on.
At some future day, Elijah will overcome this first death that he has experienced now, this separation of his great spirit from his little pain wracked and diseased mortal body. Through the power of the resurrection of the Messiah, Jesus Christ, his own little body will be purified, made strong and whole and perfect, never again to feel physical pain or suffering. It will be bonded to his spirit, inseparably connected, never to die again.
And then because he endured faithfully to the very end and relied wholly on the merits of Jesus Christ, that second death, the separation of Elijah from the presence of God Himself, will be overcome for the last time.
I imagine that on that day, Elijah will kneel down before his Lord and his God, and he will say, not with amazement and disbelief, but with a confidence born of a lifetime and more of faith, “Father, I didn’t die.”
And the Lord will crouch down, take his hand, raise him up, probably give him a big hug, and say, “Enter now into my presence my beloved son, and go no more out. Rest with me.”
And then Elijah will begin his real life, his eternal life, one that the eye hath never seen, neither hath the ear heard, so great and marvelous things which God hath prepared for him.
In the name of Jesus Christ, Amen.