Category: Childhood Cancer Stories 2014

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 Melissa Davis

“Sometimes being a brother is better than being a superhero. “- Marc Brown.

For our family,, my daughter’s superhero is her brother.

Our daughter, Brynlee was born January 20, 2011.   She was our little miracle. It had taken me two years to get pregnant. I can honestly say I didn’t take a second for granted with her. I was fortunate enough to  be able to take off from work her first year of life. I was there for every first moment — first smile, rolling over, first laugh, first crawl, first food, etc.   I dreamed of all the things we would do together as mother and daughter when Brynlee got older; manicures and pedicures, prom dress shopping, wedding dress shopping, becoming a grandma. I didn’t think I would be able to have anymore children, but to my astonishment, eight months later I was pregnant with another little miracle, our son, Ryan.

Life was nearly perfect.

Then, on August 26, 2013 our nearly perfect life was shattered.  We brought Brynlee to our pediatrician because her eyelids had been swollen and she was sweating at night. Her doctor did bloodwork and 10:30 that night we received a phone call no parent should ever get. We were told to bring Brynlee to the hospital immediately. Her bloodwork was abnormal and it could be leukemia.

I went into shock. It had to be a mistake. Not my baby girl. I remember my husband carrying Brynlee to the car. Tears streaming down my face as I followed, thinking not my beautiful baby girl. I sat in the back of the car with her as my husband drove. I held her hand and stroked her face and hair while singing her back to sleep.  I prayed to God to make it be a mistake.

That night our baby’s innocence was taken away. She was poked more times than I could count as they tried to get a vein for more bloodwork and an IV line. After being in the ER for about three hours, a doctor came into our room to confirm our biggest nightmare, “Your daughter has cancer, but the good news is…” – yes, she said there was good news, “…if she was to get cancer this is the one you want her to get. This was the good kind.  She has the most common and most curable form of leukemia, an 80% cure rate.”

Let me tell you right now, there is NO cancer you want your child to get and there is NO “good” cancer.

We were admitted that night. My dreams of Brynlee’s future fell to the wayside as she began the fight of her life. About two weeks later Brynlee was discharged from the hospital and we were reunited with Ryan. He was so excited to see all of us again. Around that time we also learned that Brynlee had some rare chromosome issue that could cause her leukemia to be resistant to chemo.

On day 29 of treament, every leukemia patient gets a bone marrow biopsy. It is part of the protocol. 95% of children go into remission the first month of treatment and then continue chemotherapy for approximately another 2-3 years.  Unfortunately, Brynlee didn’t go into remission. She failed the induction phase. We couldn’t believe our daughter failed a test.  We joked around that this is the only test she is ever allowed to fail in her life and it better not happen again, but in my mind, all I kept thinking about is what the doctor said the first night. That this was the “good” cancer and now we were receiving more bad news.

Because Brynlee didn’t reach remission she went from high risk to very high risk and would need a bone marrow transplant, but she would need to reach remission first. I couldn’t believe only a month into this and our baby was going to need a transplant. We began the process of looking for a donor. Myself, my husband, and Ryan were all tested.

A few weeks later, the nurse practitioner told us the good news that Ryan was a match. There is a 25% chance of a sibling being a match. Tears of joy streamed down my face. Finally, some good news.  It was better than good, it was amazing. There was a reason God sent Ryan 17 months after Brynlee and we had even saved his cord blood, which the doctors said we would use to spare Ryan surgery. Now all we needed was Brynlee to get into remission.

The next month, Brynlee still wasn’t there. By the fourth month, we were told that we had done all the standard chemo and if she didn’t reach remission our options were running out. Can you believe it? Only four months into treatment and we were running  out of options. Four months of getting bad news when this was the “good” cancer. Brynlee’s second chance at life was right there, waiting for her, yet if she didn’t get into remission we couldn’t do the transplant.

Thankfully, five days before Brynlee’s third birthday we received the news that Brynlee was in remission. I dropped to the floor with such relief and just cried. Our son was going to give our daughter a second chance at life.

On March 20, 2014, Brynlee received Ryan’s cord blood, but the doctors weren’t confident it had enough cells, so the next day Ryan went to surgery where the doctors took bone marrow directly from his hip area. About three hours later he was walking all over the hospital as if nothing happened.

Today, we are 6 months post transplant. Brynlee is doing very well and we are adjusting to our new “normal.” Brynlee and Ryan will always have a special bond. Neither one of them comprehend how special their bond is, but when they grow up, they will. Ryan has accomplished more in his two years of life than most accomplish in their whole lives.

He will always be our superhero!

**********

And from me, a note of extreme gratitude as we wrap up this 2014 September Series.  Those of us in the childhood cancer community know it is not easy to witness our pain, sadness, and devastation, and we are grateful that hand in hand with those things you also see our hope, our wishes, our efforts to fund research specific to childhood cancer.

If you were moved by these stories, please consider matching the awareness you have now gained with some tangible action.  There are many national and local organizations dedicated to funding research to better understand and treat childhood cancer.  Our family supports the efforts of St. Baldrick’s, the number one funder of pediatric cancer research in America.  On March 28, 2015, we will host our 4th annual shave event in Chicago.  I will post a link as soon as it is live for folks to register to shave or volunteer.  

Other organizations whose work we support is Alex’s Lemonade Stand and Cookies for Kids’ Cancer.  

Thank you, as I say, from the bottom of my broken heart, thank you.  

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.

********** 

Tomorrow, the 2014 September Series comes to an end.  If you like what you’ve seen here at Mary Tyler Mom and want to stick around, please subscribe.

Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.

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.

 **********

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.