Ryan Dustin Wagner was diagnosed with lymphoma on September 29th, 2010 and exactly 10 months later to the day he would be gone.
He no longer lives in this house on Robison lane but I feel him everywhere. He lives in our hearts now.
I watched my beautiful radiant shinning energetic loving boy wither and fade away. I watched Ryan live a beautiful life. Then I watched Ryan suffer. And then I watched Ryan die.
* * *
I think we were doomed from the start. Ryan did well on the chemotherapy regimen for awhile but it didn't take long to stop working and the giant tumor in his chest was still growing, despite the chemotherapy.
A bone marrow transplant was to take place soon. Ryan's brother was a perfect 8 out of 8 bone marrow match! Bridge chemotherapy was needed until we could get the tumor under control, but Ryan almost died from it. He had a seizure and could no longer be given the main component of the bridge chemo called ICE. So we next tried vinblastine.
We just needed to get the tumor under control to go to the bone marrow transplant.
We would literally go from packing to fly to California for the bone marrow transplant that would save him to being told: "Stop packing. He isn't going to make it."
The bone marrow transplant was off the table. There were no further treatments for Ryan. He was going to die.
* * *
Hope was fading and almost gone, but I wouldn't let go. And Ryan wasn't ready to go either. I could see it in his eyes: that spark, the will to live -- it was still there. I had to try something.
We found a clinical trial at the City of Hope in California, and we were air evacuated on a medical flight from Oahu. We would be there six weeks trying to save Ryan.
We tried three different chemotherapy regimens there in those six short, agonizing touch-and-go weeks. None of it was working. Ryan had pleural effusions the entire time he was there. So he had two chest tubes inserted in his chest that drained into two large containers. I measured the fluid everyday, hour by hour, with hopes it would slow down. In hopes it would stop. But it didn't.
Ryan would suffer here, and it is the suffering that kills me. It is the suffering that wakes me up at night in a sudden panic and my heart hurts for any pain we caused him to have. Ryan would be intubated twice at the City of Hope in order to save him. Twice was enough, and I could not allow him to be intubated again. A third time, I believe, would have killed him.
We tried and we tried to save him.
We held on to the hope that one of these chemotherapy drugs was going to be the one. We weren't even sure the effects they would have on Ryan, as these were all drugs designed for adults with cancer. None of them were intended to be used on a child.
One night, as they were trying to lower the dose of Ryan's pain killers through his IV, he seemed to be breathing heavy. My husband was sleeping right by Ryan's side, and I was up sitting beside him, holding his hand. It was dark in the room except for the lights from the machines that pumped his meds and antibiotics and nourishment and all the lines plugged into him. He looked like a tangled mess, and he was breathing so hard and sweating.
Ryan said to me, "I feel like I am in a Jacuzzi."
I held his hand and thought: This is it. He's going to die here right now and I feel so f----- sick that I am just going to let my baby die. I didn't even wake up my husband because I was so scared, but I didn't want to scare Ryan. I didn't want Josh to see. I just wanted to hold Ryan. I told him I love him. And then I just couldn't take it anymore. I woke up my husband. I called the nurse. Ryan made it through that night, but in the morning, I realized something: We can't let him die here. Not in the hospital.
I called my son's pediatric oncologist in Oahu and told him we were ready to come home. He had us all on a medical flight home to Hawaii that evening under the terms that I was accepting hospice care and ending treatment.
They warned us that Ryan probably would not make the flight home - but we had to try. We signed a 'do not resuscitate' order. It would be along 5 and a half hour flight back to Hawaii, but Ryan would make it.
* * *
When we brought Ryan home to Hawaii he seemed happier, more alert, more alive. He could no longer walk, and he didn't look so good. But he was feeling better, I think, to just be home.
The doctors gave him two weeks to live.
We took Ryan to see a beautiful sunset at the beach one night. He asked to go. He wanted to go to the Japanese Buddhist temple with koi ponds that he used to love going to. We did what we could with Ryan to keep him happy.
Inside though, it felt like we were all dying.
Ryan would die exactly two weeks after we brought him back from California, in my arms at home in Hawaii. We sat out on our patio with him. I told him how proud we were of him and that he had been so so strong. Then I told him, "I know you are tired, Ryan, and you can go now. I will always love you, I will always love you, and you will always be with us, Ryan."
We cried. We screamed. The screams came from Ryan's then-9-year-old brother Cameron. He screamed like he was on fire: "Ryan don't go! Ryan come back!"
The screams would come from me days later and they haven't really stopped. I used to scream so loud and cry so hard that my throat would become raw and sore. And I couldn't scream anymore until the next time it hit me: crushing, pounding waves that knock me down flat on my face sometimes.
* * *
Ryan had the most beautiful memorial service at the last beach he ever swam and played at. We call it "Ryan's Beach" now. Over 100 motorcycle riders from the island paid tribute to my little boy and gave us a biker escort to the memorial spot at the beach. Over two dozen surfers did a traditional Hawaiian paddle out with us while my family paddled out in a canoe to spread Ryan's ashes.
The conch shell blew, and I released Ryan's ashes into the sea. White doves were released upon the shore. Pink plumaria petals were strewn into the ocean. A Hawaiian kahu conducted the service, and my husband and I read eulogies in front of surfers, bike riders, friends and family.
Ryan was truly loved.
I still struggle with accepting that Ryan is gone. I still scream from time to time. I still see him running on his beach. I still hear his little voice laughing, and I still wish with all my heart that I could change it all.
I replay scenarios in my head over and over and think of all the 'what if's.' What if...
I know I will always feel sorrow, and part of us will always be sad.
We live for him now. And for his brothers. Sometimes, I want to fast forward the time until I can see my baby boy again, but I remind myself of all the things I would no longer get to do when I die. I will no longer get to live for Ryan when I die. And so I take a deep breath and try and be brave and just get through the days.
We laugh. We cry. We hurt immensely for what we lost. We have regret and we have sorrow, but we have joy that we had Ryan. He is our light, now and forever.
* * *
We have the hope that one day childhood cancer will be cured. We have the hope that our children will have beautiful lives and - somehow - use the past to guide them. I tell them to live for Ryan now. He will be in our hearts' forever.
But he should be here with us. He should have had a fighting chance to live, and he never did really. I will advocate now for the rest of my life for Ryan, and for all the children of this horrible disease. We need to do more for them. Why does the vast majority of the public seem unaware of the real statistics of childhood cancer? Why is there not more funding for pediatric cancer research? Why was Ryan's lymphoma not diagnosed earlier? Why? Why? Why?
On the night Ryan died, when I told my son Cameron that his brother was gone now, he screamed back at me: "You are wrong, mommy! He will always be with me. He will always be with me!" And Cameron was right: Ryan will always be with us.
We miss you, baby boy. More than all the grains of sand in all the beaches of the world. More than all the stars in the universe. To the moon and back, times infinity!
We will see you again, Ryan, someday over that rainbow."
* * *
In loving memory of Ryan Dustin Wagner, 2.5.05 - 7.29.11
Ryan Wagner's family started a foundation, Ryan's Light, in his honor to fund a music therapy program in Hawaii for children with cancer. Ryan's Light Foundation →