Act as if what you do makes a difference. It does.
I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do.
~ Edward Everett Hale
Have you ever met someone and felt like you’d just been introduced to an old friend? I had the pleasure of meeting Jennifer yesterday .. and she’s beyond awesome. More to come on this, but if you’re not yet following her family’s story .. well, do. Luck2Tuck
~ Diary’s Facebook status, August 12th, 2012
The Gowen family is living through a nightmare. But led by their son, Tucker, they are traveling the road with honestly, grace and humor — and an inner strength that they never knew they had. What follows is their story, as told by Jennifer.
It had been a beautiful day. For the first time in a long time I felt actually excited and hopeful. We had just finished a 3 hour MAPS/Future Plans meeting at the high school for our son Tristan, a 10th grader with Aspergers. All of his teachers and family were in attendance. We had discussed at great lengths Tristan’s strengths and weaknesses, his goals in life, and what his hopes, fears and dreams were. All of this put into place to help Tristan plan for the future and help him to figure out what he wants to do after high school and beyond. It was the first time ever that I didn’t feel like the future was so scary for him. We had a plan. We had a team of people who loved and supported him. The world was filled with possibilities. WE could do this…HE could do this. I felt elated.
However, during that meeting there was one thing that took me a bit off guard. I still to this day have NO idea why Tristan even said it. When we asked him about his fears, Tristan sat up straight, looked at all of us in the room and said, “My biggest fear in the world is that someone I love will get cancer.”
Now, blurting out doom and gloom comments wasn’t so unusual for my son. He tends to worry….A LOT. So I was used to this; but for some reason that particular comment made me shift a little more uneasily in my chair. After all, I had lost my mother to cancer. I certainly wasn’t going to tell Tristan that it couldn’t happen. I knew full well you could never make a promise like that to your child. Because, what if? God forbid, what if? So instead I assured him that although that is a very scary thought, I don’t want you to worry about things like that. I want you to enjoy life and be happy. Take each day as it comes. Stop and smell the roses. Tristan trusts my face more than my words, and if my face is smiling at him and sending him love and positive emotions, he will trust it. He seemed content with my answer.
How little I realized that fear of Tristan’s was about to come true.
Tristan’s older brother Tucker, a junior in high school, was at the meeting as well and he was having a tough time hearing because of an ear infection he had from swimming. Just watching him struggle was driving me crazy in the meeting, so I decided to take him back to the doctors right after school to see if we could change the antibiotics he was on. Surprisingly, when our pediatrician checked his ear out she said that it was clearing up. It would just take some time for the fluid to go away. Knowing how crazed and busy we are and how hard it is to get him in for an appointment, my pediatrician asked him, “Well, since you’re here, got anything else bugging you?” Tucker mentioned his stomach had been hurting a bit, which we thought was from the antibiotics he was on. Upon further exam though, she found the area around his spleen to be tender. She thought it could be a case of mono, which is very common in 17 year olds. We needed to get some further testing, so she sent us to the ER because it was 5Pm on a Friday and all the offices were closing. It was sheer luck that we went. They drew his blood and we waited. An hour after arriving, the ER doctor pulled me aside and delivered the most devastating blow of my life … My beautiful son had Leukemia.
The body has a way of going into shock to protect itself. I think mine went into overdrive that night. I tried to digest the words the doctor was saying to me, but I couldn’t. My mind was racing. I heard myself ask “Ok, that’s worst case scenario, what else could it be?” Her response was, “We are fairly certain it’s leukemia.” Then SHE burst into tears. I knew if the doctor was crying this couldn’t possibly be good. Think Jennifer, think. My mind was racing with a million thoughts. I needed to get him to a good hospital. How was I going to tell him this? How was I going to tell his brothers and sister this? Tristan is going to freak. He just got through telling a room full of people 3 hours earlier this was his biggest fear in life, and now it’s happening!? Is this a sick joke?! How could this be happening?!!!!
I needed to talk to my husband. My body was shaking uncontrollably. The doctor asked me if I wanted a warm blanket. I told her I needed to sit down for a second. I thought I was going to pass out. My teeth were chattering as I spoke to her. She ran off to get me the blanket, and I sat down to call my husband. My hands were shaking so badly and all the heat had escaped from my body. I could barely dial my iPhone. All the while Tucker slept peacefully 10 feet away from me behind a curtain.
The second my husband answered and I heard his voice, the flood gates opened. I couldn’t even get the words out. He knew immediately something was wrong … seriously wrong. When I finally could form a sentence and tell him, he as calmly as possible said “We are going to get through this and we are going to figure this out.” I told him how they wanted to send Tucker to a local children’s hospital by ambulance, but I thought we should take him to Boston Children’s Hospital, which was too far for an ambulance to go. He agreed; we needed to get him to Boston.
Me through the sobs, “But Truck, I don’t think I can drive him there. I can’t stop shaking, and I don’t know that I can keep it together in front of Tucker for the 2 hour drive.” He said he was on his way. He couldn’t get there fast enough. I was going to crumble.
We agreed that he would drive him and I would go home to take care of the other 4 kids, pack up and meet him in Boston in the morning. How my husband made that drive that night is still beyond me. At 1 am on March 24, 2012 Boston Children’s hospital confirmed the diagnosis of leukemia. I cried the entire night. I probably slept for an hour, if that. When I woke up, I was living a nightmare.
It’s amazing how strong a person can be when not faced with an option. Those first weeks after the diagnosis were a blur. We learned that Tucker had the rarer form of leukemia called AML, and that to treat it he would have to be in the hospital for at least 5-6 months. He wouldn’t be allowed to leave because the treatment would bring his Absolute Neutrophil Count ( the thing you need to fight infection) down to zero. The germs of the outside world could kill him.
5-6 months?! How were we ever going to do this with 4 other children at home 2 hours away from the hospital? The whole thing seemed daunting. But, one thing I have learned in my life, especially having a child with Aspergers, is to take things one day at a time, one minute at a time if you have to. Whatever you need to do to get through. This was no different, except on a much more frightening level.
Jennifer with Tucker and little sis Aisling
Both my husband and I were trying so hard to be strong for Tucker and the other kids. There were many moments, especially in those first few days, that I thought I can’t do this, but then the reality of my situation would hit me and I realized I didn’t have a choice; I had to do this. I HAD to be strong. If it wasn’t for the support of our community and our friends and family, I don’t know how we would have made it through that initial phase. They picked up the slack where we couldn’t. I was so worried about Tucker, but I was also so worried about the other kids, especially Tristan. For the first time in my life I had to relinquish all control when it came to them. Tucker needed me in the hospital with him.
We muddled through each day, and slowly but surely I watched all 5 of my children rise to the occasion. My heart soared with pride for all of them. I always knew how resilient children could be, but I was now seeing it with my own two eyes, and on such a grand scale. They were all willing to go with the flow, even Tristan. Whatever it took to cure Tucker, they were ALL on board for it.
Tucker has been at Boston Children’s Hospital now for 5 months. To say it has been a roller coaster ride would be an understatement. But, the doctors and nurses have been amazing, and I am SO happy to report that he is in remission!!! He has one more very looooong round of chemotherapy left, then he will finally be heading home.
Aisling, Lochlan, Finnian and Tristan waiting to welcome their brother home
Follow the Gowen’s journey HERE
YOU CAN HELP.
If you are in the Boston area, PLEASE donate platelets and blood. Check out: www.halfpints.childrenshospital.org for details and make an appointment to donate to Tucker or any of the other children fighting cancer at Boston Children’s Hospital.
If you are not in the Boston area, please inquire at your local hospital about their donation programs. Children and adults fighting cancer need countless blood and platelet transfusions as they go through chemotherapy.
Consider being a bone marrow donor. Click HERE to find out how. A thirty-second cheek swab puts you in the database, where, if you are matched with someone in need, you can literally save a life.
Donate directly to the Gowen family at Luck2Tuck, c/o Webster Bank, 100 Main St. North, Southbury, CT 06488