A Journey to Find the Truth and a Cure Part I

My Son

This is a series of articles that cover some of my son's journey including his cancer, chemo after effects and late effects, seizures, natural aids, and what I discovered in my research. I'm hoping it will help everyone in some way who can relate to this story.

My son had leukemia at 3 1/2. Yes he survived the cancer, thank God, he is now thirty two years old. He had one of the most prevalent forms of leukemia, ALL (Acute Lymphoblastic Leukemia). ALL is a blood cancer that starts in the bone marrow and spreads and mainly affects children from the ages of 2 to 5. Because of the treatment he underwent he has seizures, they continue to this day.

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Back to the Beginning

I remember the first clue that told me something was wrong and it was a big clue. He had been standing and walking like children are supposed to be doing at 3 1/2, he had hit all the milestones, but that day he was crawling again and wouldn't stand up. He looked so tired.

His pediatrician referred us to a major college hospital which was two and half hours away. I honestly don't remember the trip, but I don't think either his father or I will ever forget the day they told us he had leukemia.

We were stunned, silent, then crying and I know that I felt anger. Back and forth the emotions ran.

There were at least four doctors and interns who had filed into the room to give us the news. None of them could meet our gaze. They looked like they wanted to be anywhere but in that room giving us the diagnosis.

Our immediate questions where:

• Why? WHY???? He was 3 1/2 years old! WHY????

• How do we make him well?

The why I would learn many years later and at the time we chose chemotherapy "to cure" him. Now I would never chose chemotherapy. Although I do not believe in chemotherapy anymore, I do think the doctors and nurses thought this was going to make him well although I still wonder if they were in our situation would they have chosen it for their child. I do believe it was God who made him well; not the chemotherapy.

I'll never forget how we failed him. We chose not to go in with him for his first spinal tap. The sound of his screams and crying will never leave me. I vowed to never let him go through any of this alone again. I carried him into the operating room to get his port. We were always in the exam and treatment rooms with him. We stayed in the hospital with him; always. The hospital was a teaching hospital and there would always be someone coming in to look at him. The doctors and then maybe a half hour later the interns. He couldn't get any rest, so we finally told them that they all needed to come in at the same time to see him.

It was so heartbreaking and almost surreal. We held each other up to be strong for our baby. So many people back home were praying for him. Unbelievable gifts were given to support us as best they could during this time, but the prayers we knew were the most important gift of all.

He had his first seize, grand mal, when he was 4 yrs old. They figured it was the methotrexate that they were giving him intrathecally. `That treatment was halted, but the rest of the cancer treatment went on for three years. There were lots of days of crying, pleading with him to take his "medicine", cleaning up vomit, sleeping with him all wrapped up in his port line; it was all a nightmare. No child should go through this.

His seizures were very sporadic his next one being 8 years later! Then the next being 9 years after the last and 5 months later, then 3 months, 9 months, 8 months, 11, and then as few as 1, The time between has decreased. It's been all so very unpredictable. This all started in 1997?? and to this day he has seizures. Not daily like some people have (God help them), but once every few months is too many for anyone. He sometimes has what we call spells where his hearing goes and his vision is off. At times these have turned into grand mals. If you've never seen anyone have a grand mal seizure thank your lucky stars because it's one of the worst things you can ever witnessed.

My son is on a pharmaceutical because we didn't know what else to do. It's called Keppra. He tried medical marijuana but there wasn't enough information at the time on what the dose should be etc., but he tried it with what little knowledge we had on how to use it; so needless to say it didn't work for him.

In the next article I'll share what I've learned through many years of research. I'll never give up and I always tell him "we'll figure it out".

"We'll figure it out."