September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics. The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action. Read more about this series and childhood cancer HERE.
By Anita Wagner
Ryan Dustin Wagner was diagnosed with lymphoma on September 29, 2010. 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 live a beautiful life, then I watched Ryan wither and fade away, then I watched Ryan die.
Ryan did well on the chemotherapy regimen for a while, but it didn't take long to stop working and the giant tumor in his chest was re-growing through the chemotherapy. Sometimes I think we were doomed from the start.
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 the it. He had a seizure and could no longer be given the main component of the bridge chemo called ICE. We had to try a modified version, it was our only option and we were still hopeful.
We would literally go from packing to fly to California for our bone marrow transplant to save him to being told to stop packing, he wasn'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.
Just like that, all the hope 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. His will to live was still there. We had to try something. We had to fight. We found a clinical trial at the City of Hope in California. We were air evacuated on a medical flight from Oahu to City of Hope. We would be there six very long weeks trying to save Ryan.
We tried three different chemotherapy regimens there. None of it was working. Ryan had these pleural infusions the entire time he was there. So he had two chest tubes inserted in his chest which drained into two large containers. I measured that fluid everyday hour by hour in hopes it would slow down, in hopes it would stop, but it didn't.
Ryan would be intubated two times 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.
One night Ryan seemed to be breathing very heavy, it was labored. I was up sitting beside him, holding his hand. It was dark in the room except for the lights from the machines that pump his meds and antibiotics and nourishment. With all the lines plugged into him, he looked like a tangled mess. He was breathing hard and sweating and he said to me "I feel like I am in a Jacuzzi." I hold his hand and think this is it, he's going to die right now and I feel so sick that I am just going to let my baby die here, I feel so hopeless. Ryan made it through that night but in the morning I realize something. We can't let him die here. Not in the hospital. It is time to go home.
I call my sons pediatric oncologist from Hawaii. He had us all on a medical flight home that evening under the terms that I was accepting hospice care and ending treatment. They said Ryan probably would not make the flight home, but we had to try. I signed a Do Not Resuscitate (DNR) order, and it would be a long five and a half hour flight back to Hawaii.
Ryan would make it through the flight. 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 wanted to go to the Japanese Buddhist temple with koi ponds that he use to love going to, so we took him. 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, and I talked to him and I told him somehow in a trembling voice, "We are so proud of you. You have been so strong and I know you are tired Ryan, you can go now. I will always love you! We will always love you! You will always be with us Ryan, always!" We cried, and there were horrible screams that came from Ryan's then nine year old brother, Cameron, my middle son. He screamed like he was on fire! Screamed like his baby brother was dying "Ryan don't go! Ryan come back!"
The screams would come from me days later and they haven't really stopped.
I use to scream so loud and cry that my throat would become raw, so sore until I couldn't scream anymore. Crushing pounding waves of grief knock me down flat on my face sometimes. I still struggle with accepting that Ryan is gone. I still scream sometimes. I still see him running on his beach, I still hear his little voice laughing. I know I will always feel sorrow.
Sometimes I want to fast forward time so 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 then 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 sorrow but we have joy that we had Ryan. He is our light now and forever. We have the hope that our children will have beautiful lives and somehow they will use the past to guide them. I tell them to live for Ryan now, he will be in our hearts forever.
On the night Ryan died, I told my son that was screaming, "Cameron he is gone now." He screamed back at me, "You are wrong, Mommy! He will always be with me, he will always be with me!" 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.
Ryan Dustin Wagner Feb5th, 2005~July29th,2011
Favorite song -Eminem, Not Afraid. Favorite color - orange. Favorite food - homemade pizzas, tacos, bananas, honey buns. Favorite games -Angry Birds, Zombie Farm , and Monopoly.
We fund a music therapy program here in Hawaii for children with cancer called Ryan's Light. Please read more about the foundation and Ryan.
If you're looking for all of the posts in the Childhood Cancer Stories: The September Series, you can find them catalogued HERE.
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