The Battle of our Lives (Part 1 of 2)

The diagnosis

Our son had not been feeling well for a while. He wasn’t himself at all. He couldn’t focus in school and teachers were concerned.  We tried many times to talk to him but he had shut down. We kept on trying. We were worried. He is our oldest so this was our first experience with a teenager. We were hoping it was just a phase.

I talked to a few friends who had experience with raising teenagers and all seemed to agree that he was going through a normal rebellious teenage phase. Like so many others, he would outgrow it. It felt good to talk about it but I had a nagging feeling that this wasn’t “normal”.  That he had something going on inside that we couldn’t see.

We got a call from the principal at the school who told us that things are getting worse.  Our son was showing symptoms of something very concerning and they would like to talk to us.

We were filled with worry as we headed to the school to discuss our son.  After a lengthy discussion, we all agreed that he likely had health issues that needed to be addressed as soon as possible.

We made the appointment to see the appropriate specialist and our suspicions were confirmed. Our son had a life threatening illness that kills more people every year than car accidents. We were absolutely devastated. Our beautiful boy was sick and we could lose him. God help us!

We were scared, sad, and desperate for answers. We wanted to meet with the specialist privately so we could find out more about our son’s condition and what we needed to do. He told us that he could not tell us anything because that would be violating our son’s right to privacy. Going forward, he would be speaking to our son only when it came to his illness.

Our teenage son could die and we were being left in the dark. We were not to be part of his treatment plan. We would not be told if he was responding to it or not. We would not get answers. We were left on our own, in total shock and disbelief that this was happening to us. Many tears of worry and frustration were shed and many more would follow.

Not responding to treatment ...

Over the next couple of years, our son’s health had gotten worse. He lost a lot of weight. He couldn’t work and do things that normal people his age were doing.  He had to give up his music. He had been too sick to finish high school.  He was only a shell of his former self.

It was clear the treatment plan was not working for him. He needed something else. As for us, we were mentally, emotionally, spiritually, and physically exhausted. Living with the fact that your child could die of his illness at any time is exhausting and terrifying. It was made even more so when we were kept in the dark about his treatment. We had no say, even though we are the ones who would hurt the most if our child didn’t make it. God, please let our son make it.

Two doctors agree that he needs more...

Two doctors, who had been treating our son for various health conditions, felt that he needed more intensive treatment for his illness if he was to get better.  They both wrote referrals, which were sent to the specialists who had been treating him.

For the first time in a very long time, we saw a glimmer of hope in our son’s eyes. He felt that he might finally get the help that he needed. He might have a chance at a normal life.  He was tired of suffering. Oh how beautiful it was to see a smile on his face again. To hear him planning for the future.

We were hopeful as well. We waited a long time for this.

Request DENIED...

We waited for more than a month for a response from the specialist. In the end, he DENIED the request for different treatment. He wanted our son to keep on the same treatment plan, even though he wasn’t responding to it and his health was continually declining. It was his hope that one day our son would begin responding to the treatment.

Our son was devastated and completely out of hope.

We were shocked and angry. I cried. I screamed. I prayed.  

Our fight to save our son's life continues in Part 2: Click here