Matt’s Story: Wishing

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 and his Mom, shortly after diagnosis.
Matt and his Mom, shortly after diagnosis.

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.

Kids with cancer often feel so lonely, even when surrounded by people.
Kids with cancer often feel so lonely, even when surrounded by people.

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.

A recent photo of Matt on a good day.
A recent photo of Matt on a good day.

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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.

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