The Jacob Pastel Story

“Dad, I have carpal tunnel” ~ I will always remember those words.
I was working in my office at home as it seemed like I did most of my life.

I stopped typing, looked at him and in a semi sarcastic but openly humorous reply I said “Shut Up Jake. You don’t have carpal tunnel”.

“Yes I do” he insisted. “It’s from working at my job. Now that I am 18, they are giving me too many hours and the repetitive work at the cash register is messing up my hand.”

“So what you’re saying is that the MAN is getting you down right?” I turned to Fish and said “Hey Fish, the MAN is getting Jake down.” Fish didn’t say anything, but just smiled.

“Jake, people your age don’t get carpal tunnel.” I said. “It’s probably something minor like a sprain or something. I’ll call the doctor and arrange for an appointment for you.

After three doctors visits, two MRI’s and a week at Children’s Hospital, we would find out that I was only half right. Jake did not have carpal tunnel. Unfortunately he had something much worse. A brain tumor called Glioblastoma Multi-Forme, stage 4. Jake's left hand continued to get worse and eventually both his left hand and leg would start losing feeling.

The next month would be spent traveling from doctor to doctor, clinic to clinic, and hospital to hospital trying to find the best treatment for this disease.

We were devastated and completely taken off guard that our tall, handsome son could have anything wrong with him at all. The news spread throughout our neighborhood in a matter of days. By the end of the week, we started receiving cards, and meals to help us survive the increased stress and work load that we were being confronted with. I was forced to stop working. My wife had to quit school. All of our time was spent trying to figure out the best plan of attack for Jake. After going everywhere from Children’s Hospital, to USD to UCLA and Cedars Sinai, we decided upon a course of treatment that included state of the art radiation and cutting edge chemotherapy using drugs that were not yet approved but had a very successful track record.

We began Jake's treatment about 1 month after his diagnosis. Now there were daily trips to USD for radiation, weekly blood tests, a chemotherapy regime and all of the side effects that came along with it. The treatment took a toll on Jake’s energy and the tumors had affected the left side of his body, especially his leg and hand. As Jake was left handed, he would have to learn to eat and write with his other hand. Being a senior in high school, we had to switch to home schooling in order that he would graduate. What should have been his best year at high school became a lonely difficult time feeling alienated from his friends and his life. The disease also took a financial toll on the family. Between the initial hospital co-pay and the ongoing co pays for doctors visits, physical therapy, lab tests and medicine co-pays we survived because of the help of family, friends and surprisingly enough, from people we did not even know or had never met.

One of these supporters was the Blue Ryno foundation. I got a call from Christian Kelly of the Blue Ryno foundation one day. Initially I felt a little funny talking to a stranger about my son and his sickness. After about a minute, however I felt completely comfortable as I could tell that the person on the other line was a true caring individual concerned about our welfare. This went right along with all the other people that were entering our lives. People we never even knew before who were trying to do whatever they could to help. Christian listened as I detailed the events of the past few months. When I was finished, he told me that the Blue Ryno foundation would like to help wherever they could. I indicated that anything would be helpful such as gas cards to help with the increased fuel expense of going to clinics and physical therapy appointments or help with food as Jake was on steroids for his condition which made him extremely hungry most of the time. Christian told me that would not be a problem and they would be happy to help. He was able to get us some gas and food cards, which helped immensely. We decided to pick them up at the foundation, as I wanted to meet the people that had volunteered to lend a helping hand

We stopped by the foundation on our way home from a clinic appointment at Children’s Hospital. We walked inside the modest office. I remember seeing only two desks and a couch. This showed me immediately that this was a foundation focused on other people, not themselves. Once again we had a very nice conversation with Christian but this time Jake was able to meet him. It was nice to see one of the people behind the foundation in person. Christian gave us the gas and food cards and again re-iterated that Blue Ryno would like to help in any way they could. In talking with Jake he discovered that Jake's biggest interests were in music and film. Christian offered that from time to time he might be able to get Jake into some concert venues to see and listen to music that he liked. There was also a possibility that he would be able to go backstage from time to time and meet the performers! Jake's eyes lit up. We could tell he was very excited about this. Seeing a smile on Jake's face was wonderful. As difficult as this disease has been, Jake has never once faltered or had a bad attitude. Jake had told me recently that he felt a little bit alienated from his friends, as their reality was so much different than his. As he said, “My friends are just living their life and I am fighting for mine”. It was not until this moment that I realized how much he was keeping inside. Jake and I left Blue Ryno and on the way home he started calling his friends bragging about how he was going to be able to see some concerts and meet the performers. For once he now had something he could be happy and even brag about. Later that week the B-52’s came into town at the Viejas Casino concert center. Christian arranged for Jake to have VIP treatment and he was able to meet the entire band. Viejas treated him like a prince. It was a great night for Jake, not the usual chemotherapy and radiation.

I have realized a lot about people and compassion since we began battling this disease. When you are faced with this type of challenge it is difficult to find anything about it that is positive. Yet what I have found is that there is a great amount of humanity present in the world. Despite all of our problems, there are many good people who want to help in times of crisis. The Blue Ryno foundation is a wonderful example of this. People we had never met taking the initiative to help someone in trouble. There is real comfort and happiness knowing people care and truly want to help others. It re-confirms my faith in the world.