In the fall of 2010 our youngest son of three boys would be starting kindergarten. My husband had just returned from a year long deployment in Iraq. We are a military family that was fortunate enough to get stationed in Hawaii in September of 2007. In August life went back to normal after my husbands return from the war in Iraq. Ryan started school, he had been eager to begin for quite some time. One day Ryan came home from school and seemed wiped out, tired. He took a nap. This was unlike him however, he absolutely hated naps. He was usually always so full of energy. I thought wow! Kindergarten is wearing him out. He would wake from the hour long nap and eat, play, outside with his brothers and friends. Somewhere around the same time I noticed he wasn't eating the school lunch I had packed for him. Banana and honey sandwiches, or just a pepperoni sandwich were his favorites. When I asked him why he said he didn't have time to eat it all. Then one day a cough began. Ryan had a low grade fever it came and went. He stayed home a few days, then seemed better, he went back to school. But he came home coughing a lot. So the next day I took him in just to be sure it wasn't "walking pneumonia" he had had this years before. On the day I took Ryan in to be seen by our doctor, Ryan was literally running in the hallways. The doctor said lets get a precautionary X ray just to be sure, but he seems fine. Go home after the X ray and I will call you if I see anything. Well after the X-ray I wasn't allowed to take Ryan home. The X-ray technician pulled me aside and said look at your sons x-ray. I looked but had no idea what I was seen. It would be explained to me later that day. He said go back to the doctor who sent you here and tell him to look at the X-rays now. OK, I took Ryan back to the doctors office not realizing how bad this all really was. Into an ambulance we went that day to the ER 30 miles away. Tripler Army Medical Center, this is where Ryan would eventually come to spend lots and lots of time at.
Sirens blaring we arrived at Tripler, Ryan fell asleep on the way. But he seemed fine otherwise. He woke up, big bright blue eyes, looking at me...wondering. My husband was still on his way to the hospital he seemed to be taking forever but in reality I think he arrived about half an hour after the ambulance got there. The ER doctor pulled me aside and very matter of fact he said it looks like your son has a malignancy as he pointed to the X-ray. A what? It looks like lymphoma, I'm sorry he said, can I call anyone for you? I looked back at Ryan he was singing , moving his little head to some song, humming. I called my husband and told him to please hurry. I'm driving as fast as I can he said.
Were going to transfer him to the Pediatric ICU and oncology will be seen him soon. Wait I wanted to say, wait this is crazy! A malignancy? lymphoma? the ICU? Oncology.....I wanted to pass out to scream and cry but Ryan so happy so unaware. I held it together. My husband arrived. I remember him being very upset and I remember thinking they have to be wrong, they have to have mixed up the X-rays , you know like when they mix up those babies in the hospitals at birth. Yes that was it. It was all a mistake. Only it was not a mistake. The X-rays were his. Two pericardial infusions A giant mediastinal tumor wrapped around his airways, crushing his heart. One lung already collapsed.
Looking at Ryan you never would have known Nobody knew. Our world would be flipped upside down that day and the nightmare had only just begun. We were sent to the ICU that day, Ryan's fluid would need to be drained or he would drown to death and die. We didn't have much time. They sedated him, we held him as they stuck a tube inside of his little body to drain the fluid, a chest tube was inserted now. The oncologist came to see Ryan and us. Your son has cancer, we just don't know yet what kind. We are going to have to run some test. The diagnosis would be revealed in a couple of days "Non Hodgkin's, Anaplastic large Cell Lymphoma alk negative with variants of Hodgkin's disease" In the days that followed we remained in the ICU, Ryan was sedated a lot, heavily. Chemo was to begin soon, but not that day. Then he ended up under respiratory distress, they would need to drain more fluid. It was building up again. He struggled to breath even with the oxygen. The other side would be drained now equals two chest tubes. Ryan made it through those first grueling days of the diagnosis, we were warned several times, he might not pull through the sedation's, the tumor was so big, crushing.
Ryan would pull the this time, a central line was inserted into his chest. 11 days after being admitted we were free to take Ryan home. Yaaaay! A weekend pass. When we returned from the weekend pass, we were cleared to leave. To go home, and begin a new normal. This is what they called it. A new normal. And on and on we went. We were given a road map. What to expect in the year of chemo. a year of chemotherapy was what we were looking at. But Ryan would not be cancer free they said until 5 years out. Such a long time away he would be almost 11 by then.
We had his central line switched to a port. We were so thankful to not have those central lines dangling out from these wholes in his chest anymore. The port Ryan hated this thing. He had to be accessed "pokes" They were painful for him, synera numbing patches became a friend. Ryan would eventually go back to kindergarten when he was feeling well enough and when he was not immune compromised. Chemotherapy was inserted into him every three weeks. He would also receive Intrathexal methotrexate chemotherapy which is given to prevent the cancer from entering the cerebrospinal fluid around the spine and brain. I hated these injections. Absolutely hated them. But Ryan was a champ, he came out of the sedation all the time just fine. Sometimes he was wide awake after wards talking, giving me a thumbs up. He rocked! The doctors said this a lot. The first time Ryan received a blood transfusion, I cried. But he again was fine. His tumor was responding, doctors were very optimistic and they said he would probably to continue to respond this way for the rest of chemo. How I wish that would have been proven true.
Sometime in February of 2011 Ryan was admitted to Tripler for a high fever. This was at about 5 months after the diagnosis. Our worst fears were coming true, X-rays revealed his tumor was re growing through the chemotherapy regimen were on. The dreaded fluid was back as well. Doctors said Ryan now needed a bone marrow transplant. we prepared to do bone marrow drives in case no match could be found in the national bone marrow registry donor system. First to check my other two sons though, Ryan’s brothers Jacob and Cameron. And we had a winner! Ryan’s oldest brother, Jacob was a perfect bone marrow match! Yes, we were going to be ok. Ryan now had to be on “bridge chemo” this was so we could shrink that tumor a little more, get it to respond and then we could be off to the transplant. This was to take place at UCLA in California. The chemo he would be on was vinblastine, a weekly dose. At about week three it was not working anymore. Now a second bridge chemo called ICE, Ifosfamide, Carboplatin and Etoposide. Srong nasty awful stuff. Ryan would be inpatient for this. It went over the course of five days. On the last day of the Ice treatment Ryan would suffer a seizure. Encephalopathy it seems from an allergic reaction from one of the components of the ICE. The Ifosfamide. He pulled out of this seizure a day later he was OK. But the Ifosfamide could no longer be given. We would need a new plan. So this component of the chemo was switched to Cyclophosfamide. Ryan’s stay in the hospital from this last round of chemo would be 19 days. He got to home for just a little bit over Easter. We came home colored eggs, visited with friends and had an egg hunt. We returned to the hospital two days later for our next dose of the modified version of ICE, and told to be packed ready to go to UCLA for the bone marrow transplant soon. It was on day three of the modified version of ICE now at the hospital, and I was watching him sleep, breath. This stuff was hard on his little body, we was losing so much weight, His spirits not as high as they use to be. He seemed so tired. I had the worst feeling now, this feeling that said something is just wrong. Doctors did an X-ray and well, guess I knew it somehow. Ryan’s oncologist walked into the room to give me the news, the dread that I was already feeling inside. The tumor re growing again and that fluid, yes...that fluid, it was back. And just like that the BMT was off the table. I was told that Ryan was not going to make it. Our doctor no longer willing to treat Ryan, as this was their last option and ours. They had run out of treatments, and only hospice could be offered. Ryan was going to die.
I wish with all my heart that this story had a different ending but it does not. That day Ryan reminded us about his make a wish trip. You see he had been granted a wish from make a wish, but between all the chemo and hospital stays and planning for that bone marrow transplant, we could not go. Ryan’s doctor to my surprise, said we will make this happen. So we went from being told to go home and set up hospice to being told we were going to DisneyWorld. Now instead of packing for the BMT, we packed for the rip of a lifetime, to give our Ryan his trip he so deserved, the last trip we would take together all the while knowing when we came home, hospice would be set up. I was still in denial. Once again the fluid was drained. We were given a pharmacy to travel with, shots to give medicine to take. An oxygen tank and Just coming off the modified ICE treatment, but days later we were on a plane to DisneyWorld in Florida. I did some research on this trip to DisneyWorld and found a clinical trial, SGN at the city of hope in California. I was desperate for something, anything. This could not really be it. There had to be something to save my baby! So back to California after two weeks in Florida. The stay was extended due to the fact that Ryan became sick, fever and well, on to Arnold Palmer we went for a four day stay. We had some hope after that stay at the hospital, grasping all the while knowing time, time was fleeting, my baby boy dying, but I could not accept it. I had to try something. Back to Hawaii now to see get this trial started in California We had to come back to Hawaii to see how Ryan was doing, and then a decision had to be made. So we got ready for California. We were hopeful Ryan’s tumor hadn't grown though and that the plural fluid in the lining of his lungs had stayed at bay....we were wrong. Scans showed and I knew in my gut it had returned just less then three weeks from his last chemo treatment, it was re growing and fast...this monster! Dam this monster! DAM THIS CANCER!!! A trip to pack for now, and one to unpack from simultaneously...a family to mobilize a dog to find a home for children to remove from the end of the year at school, and for how long? Who knew. We flew out after days of arriving back in Hawaii via a air force medical flight, All for Ryan, all for my baby. I am so grateful for our Doctor, nurses, everyone who made this happen, to give Ryan one last chance at a trial drug. He cried when he said good bye to everyone, hugs and goodbyes, maybe he knew what I could not accept. He might not make it back. We arrived in California in the middle of the night. The boys and I stayed at the Ronald McDonald house and Josh and Ryan went on ahead to the city of hope. We would be there six weeks. Six weeks with THREE different chemotherapy regimes to try...another biopsy , again I was desperate, desperate that the new biopsy would show something, maybe they had it wrong after all, the original biopsy was not good enough they concluded, and to know for sure if we had a plan B, C, we needed to redo this....so we did (regretfully) This biopsy was a nightmare. It still is and I think always will be. Ryan survived it somehow, he made it but the biopsy left him with profuse internal bleeding, he now had three tubes coming from his frail little sick body instead of the original two to drain the plural fluid. Now one was inserted through the front to drain the blood. I was fuming! Hysterical, doctors assured us the bleeding would stop. It did not! A couple days of this with round the clock blood transfusions and they finally tell us He would be dead in 24 hours unless they take they took him back into surgery immediately. So we hugged him and told him to stay strong! We asked so much of him, to endure and keep enduring, keep staying strong baby...and he said "ok". They wheeled him down the hall on that gurney and inside I felt myself dying...he wanted to listen to Eminem, the song, Not Afraid... maybe for the last time. We blared it on my IPOD, and we said "you can do this" "we will be right here when you wake up" but inside I feared the worst, how could he survive this surgery too?...his lungs already crushing under the weight of that monster, his tumor lay over his lungs, heart, wrapped around his tiny airways...
Ryan made it through the surgery! My little superman everyone began calling him. We were still in fear. Countless numbers of transfusions, chemo treatment, antibiotics, insertions of tubes, around the clock medicines in and out went the nurses....all day and night. Ryan had to be intubated from that surgery, intubated but alive and a week later extubated. Then just when things looked a speck better, more chemo to try as the trail was not working, a biopsy to re wait the results of, Ryan had another episode when he could not breath, he began to de-saturate, doctors asked what do you want us to do? SAVE MY BABY I SCREAMED! They re intubated Ryan to save him and an agonizing week later extubated him again...and he made it. How was he even still alive?
Next rounds of chemo ARA-C and Clorfarabine...doctors said it might kill him, we said we have to try it, we have to see if there was even a small chance, and it was a slim chance but we tried. All awhile the fluid does not stop, and his tumor markers skyrocketed...it is not working. We try one last chemo regimen Gemicitabine, and Vinorelbine. All in all Ryan was on three different chemo regimens at the city of hope. We were told, everything was “a trial” they gave him chemotherapy that was used for adults. No one really knew the effects these chemotherapy’s would have on a small child. But they were our only option. It was try it or end treatment. We chose to try. Ryan had moments of peace, moments of him that came out and he was still Ryan inside. We felt we could not give up. He played when he could, mostly bored games, He spoke when he was awake, he still held on to his sarcasm, his sense of humor was hysterical. He was strong yet his body weak. He had the dignity of an adult, I was so in aw of him.
One night as Ryan is having a hard time breathing, I get this feeling as I look into his eyes, this feeling that says with everything inside of me "its time to go home". In the morning scans confirm my thoughts...this too is not working. It was not an easy choice to end treatment for us still We so desperately wanted something, some hope to cling to before we left California. Doctors gave one last dose of the trail chemotherapy SGN...as we were convinced we simple did not give it enough time the first time around, and maybe just maybe all we needed was more doses. A final injection and a lot of phone calls scurrying and scrambling. mountains were moved to get us home to Hawaii that evening. I am forever thankful to everyone who got us home to Hawaii, back to our home, back to the island Ryan loved, the only home he would ever remember. Hawaii was where he belonged and the one thing I feel a little comforted by is that he made it back home alive. Family came to say goodbye, they would not be seeing Ryan again. My baby made the air force flight home, even got to hang out in the cockpit briefly. What a view it was! Leaving los Angeles...goodbye California and goodbye city of hope....so much for the hope, but we held on as long as we could, and so did Ryan, like a champ...just kept holding on. We arrived back home and Ryan’s doctors said he has a week to live, well Ryan lived two. He requested things like a trip to the Japanese temple on the island, we took him, he wanted homemade pizza, we made it, sunsets at the beach we watched intently, played board games, slept together, built lots of legos, visited with friends, and watched his favorite movies...E.T. , Rambo, Cloudy with a Chance of Meatballs, Lilo and Stitch, lots and lots of Family Guy(his favorite show)
My baby boy passed away July 29Th 2011, in my arms surrounded by his family, all the LOVE , and the light inside us all. We sat outside one last time to see the stars under a beautiful Hawaiian night. We told him how proud we were of him, and how much we loved him, and would always love him. It was time to rest now. My AMAZING little boy you will live forever in our hearts and souls, forever in the hearts and souls of so many people. We love and miss you Ryan, more then all the grains of sand in all the beaches of the world, more then all the stars in the universe, to the moon and back times infinity!!!!!!!!!!!!!!!!!!!!!!!
We will see you again sweet baby boy, somewhere over that rainbow~ meet you on the other side
All our love