Erik’s fight

We all have our reasons for supporting Kids Cancer Care.  Mine is my son, Erik. By the grace of God, he is with us today. He is among the lucky ones, who can say that they beat cancer. In his case, not only did he beat cancer; he beat cancer twice!

When Erik was only two years old, he was diagnosed with acute myeloid leukemia. That was just over seven years ago. Like all families of children diagnosed with cancer, we were devastated.

On March 21, 2010, I brought Erik to the emergency department at the Alberta Children’s Hospital, because his leg was hurting. He had also been developing some unusual small bumps on his chest and neck that were turning purple. I remember paying for only one-hour of parking, thinking we’d be in and out in no time. The doctor ran some blood tests and the results were shocking.The reason his leg was hurting was because his bones were expanding from the internal pressure caused by the rapid growth of leukemic cells in his bone marrow.

Eirk & Paul Mask
Erik and his father Paul early into the cancer journey

Erik was immediately admitted into the oncology unit and a team of doctors quickly produced a custom-tailored treatment protocol of intense chemotherapy. That anticipated one-hour visit to the hospital turned into six months.

The Alberta Children’s Hospital, a place we had never even been to before, became our second home. My wife Carol moved in to the hospital with Erik to help provide around-the-clock care.  Our family was instantly torn apart. I visited them every day after work and then returned home to care for our other two boys.

Back then, our oldest boy Alex was four years old and our youngest boy Sammy was only a baby. Occasionally, they could visit Erik. However, because of his compromised immune system, this wasn’t often. Special precautions were often required of anyone entering Erik’s room. This involved removing outside footwear and clothing and using sanitizer. Visitors often had to wear a hospital gown, gloves, a hair net and a mask to prevent what could be a deadly infection because his immune system was so compromised by the chemotherapy.

On September 17, 2010, after six grueling months, we were finally discharged, with the great pronouncement that Erik was in remission — meaning that they could not detect any leukemic cells through blood tests. We continued with frequent follow-up visits to the hospital and numerous additional blood tests over the next year.

On the one-year anniversary of his discharge, we hosted a large celebration, with over 100 people. Erik had beaten cancer and we celebrated loud and proud. AML is an aggressive cancer with only a 50 per cent chance of survival. We felt incredibly fortunate and wanted to share that blessing with the entire world.

After a continued period of compromised immunity and ongoing precautions, our lives slowly returned to normal. Erik started pre-school sometime in January 2011 and returned, with some limitations, to certain extra-curricular activities.

Erik Central Line PJs
Not overly impressed with the central line in his chest

After two wonderful years in remission, our worst fear came true. On December 1, 2012, very early in the morning, Erik climbed into our bed, complaining that he wasn’t feeling well. After a short time, we noticed that he was rapidly losing control over his balance and neurological functions. He lost his ability to speak and then could not stand. The entire left side of his body was effectively paralyzed.

I rushed Erik back to the hospital. They ran more tests and confirmed that the same cancer was back. CT scan images revealed that leukemic cells had completely infiltrated his brain. This could not be detected through his regular blood tests. A spinal tap and bone marrow aspirate further revealed that the cancer had spread throughout his bone marrow and central nervous system.

At this point, the prognosis was grim. I had always believed that if Erik’s cancer returned, he would not survive. I thought for sure this time we would lose our son. The oncologists, on the other hand, maintained a positive level of guarded optimism. Erik was immediately re-admitted and placed on an even more intensive regime of chemotherapy.

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After relapsing, Erik’s only hope for survival was a bone marrow transplant, which this generous Texan Brent Lewlling made possible by undergoing surgery to donate his stem cells through a bone marrow transplant

The only hope of surviving this relapse was through a bone marrow transplant. Unfortunately, no one in his family was a match for Erik, so they had to search the international stem cell database. Luckily, three perfect matches were found and the process of further testing and screening these anonymous persons began.

After several months of living at the hospital and going through the horrors of treatment all over again, it was time to prepare Erik for the transplant. This involved completely eradicating every living cell in his bone marrow. First, Erik was subjected to radiation every day for a period of three weeks, starting with a period of direct radiation to his brain, followed by a period of radiation to his entire spinal cord and brain and, finally, by a period of full-body radiation.

After this intense radiation, they administered an additional super toxic dose of an ultra potent chemo drug, in order to ensure complete annihilation of the cancer cells. This was also administered directly into his spine. They said that Erik’s body had to be destroyed before they could rebuild him. They literally took him to the brink of death. I didn’t know which was worse, the disease or the treatment. He required frequent blood transfusions, he was taking countless medications to combat the plethora of side-effects, his skin was burned and peeling from radiation, all his hair fell out again, and he lost so much weight, you could see his bones.

On April 19, 2013, we were discharged again. This time, Erik’s recovery was very slow. For more than a year, he had very little energy and could not keep up with his brothers and friends. His weight also remained the same over the next 15 months. Eventually, his energy returned in leaps and bounds and, today, Erik is an active nine-year-old, engaged in many sports and extra-curricular activities.

Erik has come through the worst of it, but like so many childhood cancer survivors, his battles are really only beginning. The cancer treatments that saved his life, left him with learning problems. When Erik was spending precious time at the hospital, he should have been at school learning to read and write.

As a result, Erik fell behind in school, which started to affect his confidence and interest in learning. But last fall, Erik started participating in weekly tutor sessions with a tutor through Kids Cancer Care’s new Education Support Program.

With the dedicated support of his tutor and his mom, Erik is starting to make gains. He’s learned to do double-digit subtractions in math and his reading comprehension is improving. He’s also less anxious about learning, which is key, because he’s more willing to give things a try now. He knows he can get there, if he works hard and focuses. Despite having missed two years of school, Erik completed grade three last June (2016) and started grade four this fall.

Carol & her boys
Erik gets big hugs from his mother Carol and brother Alex.

We thank God every day for saving our little boy. We never take one single day for granted. We understand just how quickly and unexpectedly everything can change. The night before his relapse, Erik was training for a karate tournament. We were sparring in the living room and he was strong and fierce. Within only a few hours, he had to be carried to the hospital, in a paralyzed state, suffering massive seizures. He had been functioning perfectly, with brain cancer, and no one had a clue.

While we rejoice privately in his survival and hug and kiss and tell each other, countless times a day, how much we love each other, we are reticent to host any type of public celebration. But last July, we did host a celebration after finding Erik’s stem cell donor, a young man named Brent Lewelling from Beaumont, Texas. We flew Brent and his family to Calgary for a reunion and had a great time getting to know this hero who save our son’s life. We celebrated that day in honor of Brent and his generous decision to endure surgery to donate his stem cells and save a boy’s life.

But for the most part, we live with this uncomfortable balance between joyful appreciation and fearful insecurity. We can never again be certain of what is happening inside Erik’s little body or of how much longer we will have together. But, then again, none of us do. That is one of the profound mysteries of life.

So, I say CARPE DIUM! Live every day like it’s your last!

~ Paul Gracia, Erik’s father

View Erik’s YouTube video here

Erik’s photo gallery