“We make a living by what we get, we make a life by what we give.”

Winston Churchill

Our son, Jake, has a brain tumor. We are a very private family, so a year ago, we would never have considered telling the most personal details about Jake’s diagnosis and condition on a website for the world to see. It has been a journey to come to the realization that the only way for us to help our son and countless others is to find a better way to treat his cancer. We can’t do it alone. We are sharing Jake’s story in hopes of letting you know how to directly help him. Finding a cure for pediatric brain cancer has evolved to become our mission in life. We hope you can help.

At the age of 7, Jake had trouble balancing on his right side. Whether it was playing hockey or running the base paths he always seemed to favor one side. While our initial concerns were dismissed as childhood clumsiness, we pursued the issue until a neurologist scheduled an MRI for June 7, 2005.

Tuesday - June 7, 2005

We went to the Connecticut Children’s Medical Center for the MRI. When they sedated Jake we were able to give him one last kiss goodbye, and we were led to the waiting room. Little did we know that we were also kissing our normal life goodbye….one life without constant worry and fear. When they came to get us, we could tell by the look on their faces that something was wrong, very wrong.

As they explained that our son had a brain tumor, a wave of nausea spread over us. The world that we knew was gone. While we stared at images of our son’s brain on the monitor with a large invading tumor, they told us Jake had to be admitted right away, and that he could not leave the hospital or we would be putting his life in danger. We met with the pediatric neurosurgeon and began to make preparations for surgery for Thursday, June 9th.

I can’t even think of one word that could describe how we were feeling. How do you tell your 7 year old child that he has a brain tumor? All the hopes and dreams we had for our son seemed to disappear. It was the worst day of our lives. Unfortunately there were more of these days to come.

We scrambled to get a second opinion. We hired a courier to drive up a copy of his MRI to Boston Children’s Hospital. After reviewing the MRI, the head of pediatric neurosurgery agreed to perform the operation. He felt that there was no immediatre danger , and we could schedule the surgery for June 17th. After three days in the hospital we were permitted to leave.

Saturday - June 12, 2005

That weekend Jake was able to participate in his last t-ball game of the season. It was so difficult watching him play with the other kids knowing that his future was so uncertain and that he would soon be undergoing surgery. It was our last taste of normal life.

Friday - June 17, 2005
 
We arrived at Boston Children’s Hospital at 6:00 AM and went to the waiting room. Not a day goes by that we don’t think about the time we spent with Jake before they took him into surgery. Did we make the right choice? It was such a helpless feeling, kissing our son goodbye and watching them wheel him to the operating room. We both broke down and cried. We still cry when we let ourselves go back to that moment.

Waiting seven long hours as the doctors performed surgery was excruciatingly painful. Every hour somebody would come update us…. “the doctor has made an incision”, “they are operating now”,” there is minimal blood loss”, “vital signs are good”, “they are using the microscope” and finally “they are closing. The doctor will be out shortly”.

Then they bring us to a room and we are too afraid to speak and probably even more afraid to listen. We are told are son is doing well, that the initial tests indicate that the tumor is slow growing but that they were not able to remove it all. After the consult, we are numbly led to ICU and have the chance to see our son.

Saturday - June 18, 2005

The next day they took Jake down for an MRI to measure the results of the surgery.

Sunday - June 19, 2005

As we waited outside Jake’s room, we saw his neurosurgeon coming to talk to us. “Mr. and Mrs. Gainey”……We were told that they needed to operate again as they felt they needed to try and remove more of the tumor. We were stunned. Just when we thought it couldn’t possibly get any worse. How do we tell Jake that he needed to have surgery again? When we told him, he cried and said that he didn’t want to have anymore surgery.

Tuesday - June 21, 2005

Jake had his second surgery. It was déjà vu all over again. A bad nightmare that you just can’t seem to wake up from. In ICU, Jake was awakened every hour and they tested his neurological functioning by asking him to move his legs and by shining a flashlight in his eyes. Jake’s recovery over the next few days was slow. He had trouble standing up and he could not walk. His eyes were misaligned from the surgeries and we had to patch one of them at all times to stop the double vision.

Tuesday - June 28, 2005

Jake was transferred to Connecticut Children’s to continue his rehabilitation. Finally, we were able to have our other boys, Sammy (5) and Luke, come home. They had been bounced around to different family members throughout this entire ordeal. We missed Luke’s 3rd birthday (June 19th) and had only had the chance to sing Happy Birthday to him over the phone. We tried to sound happy as we spoke to Luke but we were coping with the news we had just heard that Jake needed a second operation.

Monday - July 4th, 2005

The nurses brought us to the top floor of the hospital so we could watch the fireworks.

Wednesday - July 6th, 2005

Jake had surgery to place a port in his chest that would be used to infuse his chemotherapy.

Thursday - July 7th, 2005

Jake was discharged from the hospital. All in all, he had spent 21 consecutive days in the hospital. Ken stayed with him every night spending many sleepless nights in a chair next to Jake’s bed. Babies were not permitted to stay overnight in the hotel, so Charise, with the help of her Mom, stayed at the hotel next door with our daughter, Bella (then 8 months old).

Tuesday - July 12, 2005

Jake began his first chemotherapy treatment. We watched as they slowly infused toxic chemicals into our son. It was also Ken’s 38th birthday, but obviously we didn’t feel like celebrating.

Jake would continue his chemotherapy every Wednesday until September 13, 2006. Over time he developed an allergic reaction to the treatment and had to be pretreated so he could handle the drugs. The infusion time had to be extended. The whole process would take 8 hours. Whenever he had a fever we had to take him to the emergency room to make sure the port that was implanted in his chest was not infected. We spent our 2005 Halloween in a hospital room after he came down with a fever. There were many more nights that we spent in the emergency room over the course of his chemotherapy.

When Jake was finished with his chemotherapy, he had eye surgery to try and correct the alignment of his eyes. Stitches were inserted into his eye muscles to bring his pupils into alignment. The surgery has helped but it is still not completely perfect like it was before his neurosurgeries.

As a result of the neurosurgeries and treatments, his gait is off, he is very lethargic and his processing skills are slow. It’s sadly ironic that the treatments that have helped save his life have also caused so many negative side effects. He has had 15 months of chemotherapy. He has had 15 MRIs without sedation. Each MRI takes three hours as they have to look at his brain and his spine to make sure that his tumor has not spread. It’s tough to imagine what goes on in his mind as he lies in this loud, claustrophobic machine with just his feet sticking out, perfectly still for minutes on end.

His recovery has included speech therapy, occupational therapy, physical therapy, vision therapy, psychological therapy and educational tutoring. It has taken an enormous toll on his confidence and self esteem. He never sleeps alone. He says he is afraid of the monsters which visit him in his dreams. I think this is a vestige of all the times that the doctors woke him up while in ICU recuperating by shining a flashlight in his eyes to check on his neurological functioning. We still don’t know what the long term effects of the chemotherapy will be on his cognitive functioning.

In the tub his wet hair separates on the back of his head to reveal the seven inch scar, a daily permanent reminder of his two neurosurgeries. He has been poked and prodded over literally hundreds of visits to various doctors, nurses, therapists, clinics and ERs. Throughout this nightmare, on his treatment days, we have seen two springs, two summers, two falls, and one winter pass from a Connecticut Children’s Medical Center (CCMC) window. Jacob has been robbed of the 4th of July, Halloween, countless birthday parties, and the entire summer of his 7th year. Worst of all, he has been robbed of his childhood innocence.

Despite all of the ordeals that he has faced, we are continually amazed at his spirit and his desire to be “normal”. That is our wish for Jake: to have as normal a life as possible. We want to see him grow up and have his own family one day. He is an incredible loving boy who likes to play baseball and is a huge Red Sox fan. He rides his scooter everyday at the bus stop. He plays baseball and is on the swim team. For us, it’s not about winning the swim race but just being able to race at all. He loves Star Wars, video games and Pokemon cards. He is as loyal a friend as anyone can be, if just given the chance.

Homework and getting dates will never be the biggest obstacle in his life. Jake has already starting asking the hard questions about his diagnosis. Unfortunately, we just don’t have the answers. What we do know is that our brain is what defines who we are and makes us human. It controls our movement, our speech, our cognitive ability and our emotions. Ultimately, a true cure is what we strive for, but we hope and pray that the research dollars we raise will benefit Jake by finding a way to treat pediatric brain tumors as a manageable life-long chronic disease. The clock is ticking.

While brain tumors are the second most common form of cancer in children after leukemia, pediatric brain tumors are the number one cause of cancer death. In this age of modern medicine, pediatric brain tumors have been all but left behind. Jake’s chemotherapy protocol which consisted of a 58 week regimen of Carboplatin and Vincristine has remained the same for children with low-grade brain tumors for over 25 years.

Jacob finished his chemotherapy in September of 2006. Now we wait. Every three months we have a MRI to assess the stability of the tumor. These are anxious times as his oncologist has indicated that it is more a question of “when” the tumor will start to grow and not “if”. What we don’t know is whether it will be months or years.

Thank you for your prayers for Jake. Please keep them coming.

Ken and Charise