Author: Sheila Quirke

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  

By Cindy Nysschen

You spend your life wishing. Wishing for a better, newer car. An awesome vacation. I know I do. Even now, just so I can escape the reality.

But my biggest wish is that we had taken our then eight year old son Matt to the ER sooner. That we had seen the signs. They were all there. How could we have missed them? A simple $45 blood test would have resulted in one less round of chemotherapy. But we aren’t doctors, now we know, or rather are far better educated. Now in my title of Mom, I have doctor/nurse in training attached to it.

It was 6:10 on a Sunday evening, December 2nd, 2012. I had gone to get us something to eat and gotten out of my parked car. I could see my husband walking out of the doors of the ER. He had his hands over his mouth. As I got closer I saw he was sobbing. And the only word I could hear was leukemia. For some unknown reason I had sensed what was to come. But still the blow, the words said out loud, were mind blowing. I started to scream. And sob. It took me almost half an hour to calm down, to be able to go see my son, my beautiful child.

Matt had been experiencing an off the chart headache.  He would be fast asleep and wake up screaming. He was so pale. Wouldn’t eat and would throw up randomly. The peadiatrician told me he had a sinus infection!! When I called back after 48 hrs and still no relief, I was told I had not given enough time. No runny nose but a sinus infection?

Five days later he was getting chemotherapy.

Matt was given his formal diagnosis on Monday, of Acute Promyeltic Leukemia, thirteen hours after we were told he had cancer. You can’t grasp it. When we had  gotten to the Children’s Hospital (90 minutes away), I kept asking if there was something else that had caused his blood counts to be so high. The nurse had said maybe…..

That Monday, he had a second CT scan and spinal tap with general anaesthetic. However the PIC line also had to be placed, he couldn’t have any more sedation, so that was done with local anaesthetic.

We were on the Bullet Train and we wanted off, but there were no stops in our future. The train has slowed now but it speeds up every now and than and you forget how to breathe. Than you tell yourself in/out, deep breath. We signed papers that said we had to do this, there was no other way. If we refused he would be sent home on hospice and would die very quickly. His white cell count almost doubled every day.  It was 68,000 on Monday.

I had to make the phone calls to our families overseas. The gasps still ring in my mind, the pain I could feel through the phone was unimaginable.

Tuesday he was unresponsive. The nurse taking care of him told me as a parent  I could call a CART. It would result in doctors from every corner of the hospital running to our room. I didn’t quite grasp what she was saying but did it anyway. Five minutes later and we had more than 10 doctors and nurses in our tiny room. Next thing we were running for the PICU.

When the doctor in charge of the PICU addressed my son’s heath care team, she told them first and foremost this is an autistic child,  they needed to get in place Speech and Occupational Therapy and any other service needed. I stood there thinking how I had forgotten that, how could I forget that? He was now my autistic cancer fighting child.

His diagnosis involved four rounds of consolidation. Between Consolidation 1 and 2 he received 50 doses of Arsenic Trioxide. We walked those halls every day (at first the three of us, my mom, Matt and I; then just the two of us). We would go to school in the hospital for an hour, then do his Arsenic which would take minimum of four hours. In total, by mid-July we had spent 106 days in and out patient at the hospital.

My Mom and Dad had flown out from South Africa as soon as they heard, a 36 hour flight at Christmas time.  My Mom got to stay for the maximum time allowed of 90 days. We were very blessed to have amazing friends that took in our older son (he was 15) whilst we were at the hospital. It was a lonely road. And we were so tired. Trying to juggle everything was overwhelming.

You keep expecting things to ease. For life to even out. We spent a week in the hospital this year with Chicken Pox. Then life hit us in the face again. And you struggle to deal with other hardships. My Dad lost his fight against cancer. Big things, small things come your way and it is hard to juggle it all. But we have no choice.

Our road is not yet over. We still have ten months left.  Ten months of nausea, vomiting, and severe stomach pain. And years of worry. We are blessed he is with us, We thank God everyday. And we are humbled, humbled by a child who’s innocence has been stolen. Who has behavioral problems and only once did he get really mad. A child who now has cancer and hearing loss attached to his disabilities. He already had a number of things against him, now even more. But when you ask him what he remembers, all he says is that Jesus was there by his side all the way. He remembers little else of those first few weeks.

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September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  

By Timaree Marston

On December 10, 2012, we woke up in our home as a family one last time. We got into the car together one last time, and we drove to UCSF with our three-year-old son Caemon one last time. He was being admitted to the Bone Marrow Transplant Service and would begin his chemo conditioning regimen at 9pm. Before that, he had hours of tests and a fairly miserable scrub-down with a soap containing chlorhexidine, meant to remove as many bugs and outside germs as possible from his skin. His room from then on would be a clean room, one for which we would have to scrub in any time we left the hospital and returned.

Caemon was so cooperative that day with so many things. He brought his medical supply tacklebox, having left his medical supplies at home (even these had to be fresh). He had a chest x-ray and sat so very still, and while that dreadful bath had him protesting wildly, he happily changed into comfy clothes and took a nap with Jodi on the bed while I decorated his new room with trees.

But I can tell you that in my mind that morning, I wasn’t driving him to UCSF. When I woke up early, and he was still sleeping, I imagined staying home with him forever. I dreaded what was next, knowing the transplant itself could kill him. Every cell in my body wanted to hold tight to my little family snuggled up in our big bed and just never go. I wanted to see his hair grow back, watch him turn the lights on and off on our Christmas tree, dance with him free of tubes and hospital beds and worries about platelets. We had spent the last three days baking his favorite pumpkin muffins, going out at night to see Christmas lights on houses (in fact, one we visited all three nights we were home), lighting fires in our little pellet stove, and simply being a family with our own agenda, our own rules, our own space. If Caemon wanted to eat nothing but tuna sandwiches for an entire day, that was what he had. If we wanted to stay in our pajamas all day long, we did. We made messes, cleaned them up, hugged and danced and snuggled and played and read. It was bliss, and none of us wanted to leave it. In those moments, with our son the closest to leukemia-free he had been in who knows how long, it almost seemed possible to just forget about the hospital and just take our lives back.

But it wouldn’t be possible without a transplant. We all knew that. We all knew the leukemia would return with a vengeance in no time if we didn’t go through with it, but the instinct to go anywhere but that hospital was strong in me that day, and I fought it over and over again as we packaged all of Caemon’s clothes in giant ziplock bags, placed his toys in sealed plastic tubs, packed up our own suitcases full of hospital mom clothes, and drove to San Francisco.

That night, after the tests and the bath and after “Sad-Sad Boingy Tube” got hooked back up to the IV pole, and after Caemon and Mama had a nap, and I decorated the room with trees and lights and as much magic as I could muster, we sat together in his room, and we gave Caemon what he affectionately called his special BMT present: a little Christmas carousel that lit up and played music, something he had admired countless times the year before both in a store and in a book we had.  Caemon loved carousels, so to have one of his one was pretty fabulous. He snuggled up by himself in his bed, turned it on, and lost himself in it.

 

For nearly an hour, my son gazed at the lights and mirrors, listened to the music, and watched the little animals spin around and around. When the little bears riding one of the horses would come around, he would kiss his fingers and gently touch them. He did this over and over, speaking softly to the bears. He was a little boy, mesmerized by a holiday toy, and I found myself transfixed by the beauty of the moment, yet saddened too, for beyond the innocent smile and wonder, there was something else in my son’s eyes–a sort of resolve that came with being back in the hospital, hooked back up to tubes, submitting to treatments. To see a sort of knowing wash over him, to see him visibly coming to terms with leaving home and living in the hospital again broke my heart.

Thinking back to all of that now is so hard because I know what he was about to endure, and I wonder if he was anxious about it. I wonder if he had any idea what was to come. I don’t know. I know that it was scary for all of us and that we maintained more hope than I ever imagined could be mustered, that we did everything we possibly could to save our son. A year ago today began the greatest fight of our lives, and while I know I wouldn’t—couldn’t—have changed anything, I still sometimes wish we had just stayed home, lit a fire, and snuggled up on the sofa with a big stack of books and our beautiful, beautiful boy.

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This post originally appeared in the blog, C is for Crocodile, where Caemon’s two moms write about his cancer treatment and their grief. You can also follow Caring for Caemon on Facebook.  

 

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  

By Anita Wagner

As we walked up to the mortuary where we had viewed, touched, and seen my beautiful little boy’s body silently laying there, still, just three years ago, the place we had him cremated at, I wondered how I was going to get my brain to tell my voice to speak, to tell the person, the poor stranger at the front desk, why I was there.

Images of touching Ryan’s dead little body ran through my head, my hands ran over his fuzzy hair, his stomach was flat now, no more bloating from the chemo. No more pain. My fingers gripped his lifeless hands, my lips kissed his cold little checks that still felt so very much like him — too much like him.

“I need some certificates,” I spit out somehow, “To fly with my son.  My son was cremated here three years ago his name is Ryan.” I placed a small square white box wrapped in cloth on the table to show her and I said, “This is Ryan’s ashes.”

She had kind eyes, and a sympathetic look instantly that made the tears well up inside of me and then the tears just fell, but I spoke, “I need to take my son’s ashes on a plane, we are traveling with his urn and a small box, this box.” She went to the filing cabinet to retrieve a small white sheet of paper.  “Aaahh, Ryan,” she said with a sad smile.  “How old was your baby?” I said Ryan was six. She looked down and then back up and said with a gentle smile, “Where are you going?”

It’s funny how some days I can plan a party, head to the beach with friends, campfires, s’mores, drinks, laughter, weekends filled with nonstop agendas, busy weekdays and nights with dinner, homework, playing taxi to my two boys, scheduling their music lessons, watching my oldest son now 15 turn into a man practically — he’s shaving now, my twelve year old dealing with all the struggles of middle school, but something never feels quiet right.  Something is always a little off. The empty feeling still has not gone away and I don’t think it ever will.

I stopped waiting.

Today I packed away some of Ryan’s things.  Sold his beloved 4X4 orange jeep power wheels.  OUCH! That hurt just about as much as I knew it would. He was not his things, and I keep telling myself that. It still hurts like hell, though, to see all that is left of all that he last touched go away! His room still is filled with all his favorite pillow pets, khung zhu toys, Legos, and far too many beads of courage, a ukulele he will never play. So many things, but it’s hard to part with them.

It was so very hard to part with Ryan.

My family of now four is getting ready to partake on a journey. A journey of lifetime — a two month trip to Europe.  We’ve never been there, unless you count my husband’s layovers from his military deployments, but we don’t really count them. We will be headed to Ireland, France, Italy, Spain, Germany…the most important part of the trip is Germany.

It will almost be Christmas time there when we arrive in late November to Bavaria. Years ago I showed Ryan and my other two sons pictures on the web of Bavaria’s Christmas market. Like something out of a movie. Beautiful Christmas lights dazzled, people filled the market which was covered in bright white Christmas snow, and Ryan began to cry. Not sobbing, but tears streamed down his cheeks and I said “Why are you crying?” He responded, “Because it is so beautiful that I just want to go there,” as he wiped tears from is cheeks.

Well now you will Ryan, now you will, as I wipe the tears from mine.

My family of now four will spread the little white box of Ryan’s ashes in all the beautiful places he will never go to while my mom watches Ryan’s urn, his ashes all that remain of his body. Sometimes life doesn’t go as we planned and sometimes you just have to take a deep breath, and “just keep swimming.”

This is it.  This is what we’ve got and I’m going to give it my all and make the best damn life and memories I can because I am living for Ryan now too.  We all are. We are all living for Ryan now, and he will go wherever we go . . . always.

Poem by Robert Frost