The J.I.M.M.Y. Foundation

 

"Just Imagine Making
Miracles Yours"

 

 

 

 

The J.I.M.M.Y. Foundation, Inc.

 

"Just Imagine Making
Miracles Yours"

  

  

  

 

 

Jimmyboy's Story as told by Gina Arena (January 2005)

 

 

Where to begin? My husband, Jim, and I have been married for 17 years. We have seven beautiful children, six girls Casey - 16, Jessica - 14, Victoria - 13, Amanda - 9, Jaime - 7,   Emma - 2 and one boy, Jimmy - 5, or as we call him "Jimmyboy". Although, our second daughter, Jessica, was diagnosed with autism at age 2, our life together as a family has been wonderful. We have continued through the years to try and renovate our house. It seems that every time we would begin something would happen to prevent progress. Jim got laid off, Jessica was diagnosed, Jim took a cut in pay to start a new job, I got pregnant - again, again, again and again. Money was tight but we always made it through, and became better people because of it. These past few years have been better financially, and we began preparing to add a second story to our home.  The foundation was put in to add to the kitchen and dining room. We were excited to finally be in a place to renovate our home. 

 

In September 2003, things just seemed to pile up for me personally. I had a panic anxiety attack in November 2003, and I suffered from a breakdown. It was very scary and did not know why this was happening to me or my family. My poor husband had to take over the household, and take time off from work. He did fantastic. You see, he works for The Town of Bedford, in Bedford Hills, New York and they all were extremely supportive of our needs. He also has his own plumbing business on the side, and that sometimes has him working late hours. All his customers were completely understanding, and were willing to wait for him. In his spare time, he is a volunteer fireman for the Katonah Fire Department. Plus, the holidays were approaching. I was in the hospital for 11 days, and continued treatment at a local day hospital for 15 more days. This was the best experience I have had in a long time. I was slowly getting back on track.
During my time at the day treatment, I would come home at night. Everyone was so extremely good to me, neighbors and the community cooked dinner every night for the family. I still kept asking why did this happen to me. I always have it so together. I started noticing that my son's left hand would shake, he would cry uncontrollably and sometimes just fall asleep. He would vomit in the car. I was sure he was suffering from separation anxiety due to my hospitalization. I called the doctor, and she saw him. We agreed to watch him.  Two weeks later, he was still having problems, and we thought it may be a reoccurrence of Lyme's Disease. We treated him for three weeks on antibiotics. Still no change, it was getting worse. Now it was the beginning of January 2004, and back to the doctor we go. She suggests seeing a neurologist. I call to make an appointment and miss the return call. Now the trembling is moving down to his left leg. We think he has developed neurological Lyme's disease.  I call the doctor on January 21st, and we decide to admit him to the hospital for all the tests, this way we can get all opinions. We are admitted, and begin seeing doctors. He is scheduled for an MRI on January 22nd, at about 6:00pm. What happened from there is a complete blur.





Click here to read more about the Arena's appearance on ABC's Extreme Makeover Home Edition...

At about 10:30 pm we were brought to a conference room and told words that will ring in my head for the rest of my life, "Your son has a brain tumor." No words can explain this statement. I needed air. My husband was worried because I was still recovering from my breakdown. January 23rd brought doctor after doctor, oncologists (why?), neurosurgery, etc. Surgery was set for January 27th, and there was a piece that could not be removed. It is located in a part of the brain that could not be touched. A partial resection of the tumor, during an 8 hour brain surgery, showed the tumor be an Astrocytoma slow growing, benign, but the type of cells that could become malignant if not destroyed. Jimmyboy did well through the surgery and was up and walking in no time. Chemotherapy began in February every Thursday for 10 weeks, two weeks off, then every four weeks with two weeks off. During this time he needed a blood transfusion. Our community was amazing. The blood drive set up in April brought out crowds of people. There was a two hour wait to give blood. We got 119 pints of blood, and scheduled another drive for two weeks later with a result of 85 more pints. The KFD held the blood drive in Jimmyboy's name, and people just wanted to help with something. Many local fire departments held blood drives in Jimmyboy's name in the months to follow. As said to us many times, "You never know when it could be you." Dinner, donations, gifts, blood and anything we could possibly need has been sent our way.

In May 2004, I began noticing neurological problems. On May 27th, and MRI showed that the tumor had grown, chemo had not worked, and another surgery needed to be scheduled. On May 29th, Amanda's First Holy Communion, Jimmyboy started vomiting uncontrollably, and I raced him, with my eldest daughter, to the hospital, missing the Communion. The doctors got him stable, and scheduled emergency surgery for June 1st - another eight hour surgery. This time Jimmyboy was very week on the left side, and no longer able to walk on his own. Therapy was started, and the strength was coming back slowly. His spirit was phenomenal. He just pulled people around him into his world. His hospital room was like a revolving door, everyone just wanted to be near him. He is a true bright light.

Chemotherapy began again in the hospital, this time two weeks in the hospital, two weeks home for the months of June, July, August and September. During all this time, our community held us together with more than any one person could imagine. They never stopped helping. September 5th, we had a five year old birthday party for Jimmyboy, and about 300 people attended. The local STAT flight helicopter landed in the field. What a beautiful, loving, celebrate life day. No one can even imagine that day.

During August, Jim and I had to make the painful decision that we were no longer able to be effective with Jessica's treatments for autism. After a long, long discussion, we made the decision that it was imperative to get her the right help and residential program. Miraculously, a fantastic program in Cape Cod had an opening, and she would begin there at the end of September 2004. With everything going on, we were no longer able to meet her many needs, and this facility would. It was a very heart wrenching decision.

At this point I started realizing why I had my breakdown. I realized that I had to have that before I could go through all of this. I would not have gotten through all of this without the right preparation. Things happen in steps, for a reason, and God's plan was just that. Next, I realized that I would have never been able to let Jessica go. It was pure selfishness on my part. I wanted to protect her forever, but what good was I doing for her. She needed to blossom. Again, if this had never happened, I would never have let her go and become a young woman. God again has His plan, and if you think you will get there from point A to B, you are mistaken; you take the long, hard, bumpy road. Just because I have it all planned out doesn't mean it will be going that way. I am learning very quickly.

September 2004, brought more neurological symptoms, and the doctors agreed to repeat an MRI, which revealed tumor growth again. Chemotherapy was stopped, surgery scheduled again, and more deficits to the left side. Radiation was the next option. It was put off because of his young age and brain development. There was no choice anymore. I was very worried about radiation and the damage it does to the healthy tissue. I started researching, and found Proton Acceleration Treatment at Loma Linda University Medical Center. This pinpointed radiation treatment has no exit point and spares surrounding tissue. The doctors agreed this is where we should go, and we began the process of making plans.

There are only two operating machines in the country, one in Boston and one in Loma Linda (the creators). Two more are due to open soon. Boston did not have the space to treat Jimmyboy, and Loma Linda accepted him for treatment. Again, another path that needs to be followed.

We came in October 2004, to Loma Linda for one week for planning of his treatment. It was difficult being so far from home, without our support systems and just meeting new people. Reliving the past year was difficult for Jim and I, and we were faced with decisions and what the side effects would be. We were scared.

The planning was done and back to New York for 2 and a half weeks while the staff at Loma Linda Proton prepared for his treatment. We flew back in to Ontario, CA again on November 14, which is very difficult at this time because Jimmyboy is so weak, not walking and fragile. We were due to come back on November 13, but Jimmyboy started having seizures and was hospitalized in NY for observation.

This is when the real hard time began. He missed the first week of treatment because he had a cold, and brought him to the hospital for dehydration during the first week. We had rented a condo in Redlands, CA. We moved in with Jimmyboy and started treatment on Monday morning. By Tuesday, before Thanksgiving, he could no longer speak, was seizing uncontrollably and basically we thought we would lose him. His heart rate was up over 200 at times, eyes were glazed and had no ability to communicate. He was admitted, got the seizures under control and took him home to the condo on Sunday after Thanksgiving. It was very scary. He was speaking again slowly. By Monday the same problem started again, fever, can't speak, etc. The medication seemed to be giving him a reaction. Back to the hospital, took him off medication and still not speaking. Got to take him home on Friday, December 10, meanwhile, while he was in patient he was finally having some treatments. We also learned that although he is not able to walk or use left hand, the ability to regain it is there. It will take extensive physical and occupational therapy. The following week my family flew out to spend time with us, and local organizations and friends back home made it all possible. We had a great time at Disneyland with the family, and Jimmyboy was heartbroken when they all left on December 22nd. So was I. I checked with doctors and surprised my family and flew in on Christmas. What a beautiful weekend it was. It was good to be home for a few days with the family.

So, now we are back in CA, and it is New Years Day 2005, and Jimmyboy has 15 treatments to go.  Well, as most of you know, I came home with Jimmyboy for Christmas. Jimmyboy's reactions disappeared while we were home. We were unable to get a flight back on Monday night so returned on Tuesday night. Daddy Jim came with us because we had a lay over in Phoenix, and it was a good thing he did because the flights were delayed because of weather. What an extremely bumpy ride from Phoenix to Ontario, CA. Anyway, we then realized we were at the wrong terminal compared to where the car was, and we walked about a mile in extremely heavy rain. There were tornado warnings we found out later. I put my coat over the stroller, Jimmyboy never got wet, but Jim and I were a different story. We really had a good laugh. It is nice to enjoy the things in a different light. These things really don't bother us anymore. So, back to the condo we went, to ants that had taken over the place, and Jimmyboy starting to have another reaction. We figured out that they probably also bombed the place to get rid of the ants. Wonder why he was having such bad reactions. The next day for treatment, packed up the condo, signed new paperwork for new place, moved in that night and Jimmyboy has been great ever since. All three of us spent quality time together until Jim's departure on New Year's Eve and landed at 8:20 am on New Year's Day. I am sure the girls were thrilled to see him. He will bring Jessica back to school on Sunday, January 2nd. Jimmyboy and I miss him very much, along with the family. Before Jim left Jimmyboy ate 7 ham sandwiches throughout the day. Making up for lost time - yes SEVEN.