Surviving 365 days.

It has been exactly 365 days since my little boy went into surgery to remove a tumor. This tumor ended up being Neuroblastoma Cancer. 

On November 18th, 2012, as we drove back from a super relaxing weekend in Shawnee, PA, I notice something was wrong with my then 10month old baby. When we got home, as I held him I felt the bloody explosion that would be his poop. I immediately took him to his pediatrician, which thankfully work on Sundays. They tested for blood and his stool and the test was positive. We are sent to the ER with a possible case of intussusception. 

As soon as we got to the ER, they began to perform all standard tests for a infant.

On November 19th, while we were admitted (because of his age, test, and a fever, we knew we would be in the hospital, minimum 3 days since that’s how long cultures usually take), a group of serious looking doctors come in to talk to us. They introduced themselves as the Oncology Team of the hospital. They explained that they needed to talk to us in private. We got into the room with the group of 4 doctors, a social worker and a nurse. The doctor in charge, begins by saying: “Your sons’ MRI shows a mass and we are not sure what it is, but we highly believe is a tumor called neuroblastoma”. He began to explain, but I CAN’T REMEMBER ANYTHING… My mind drew a blank. All I remember from the rest of the conversation was my fighting the urge to cry. I didn’t want to cry in front of them. They said that the quicker we address the problem the better it would be. So they informed me that they had scheduled a surgery for Wednesday the 21st.

As I walked back to the room I kept holding my tears, and as soon as I saw my boy I collapsed and just let it all out. I CRIED. I held my child. I prayed. I can’t remember why my mom was with me, but I was happy she was. It gave me a sort of comfort.

On November 20th, the doctor in charge of the “case” advised us to switch over to the Oncology floor as we would be “better taken care of, and more informed”. And it was true. I had never had such a beautiful hospital stay as I did. They cared so much for my baby… it was also very humbling to speak to other parents who had even worse cases and how happy they and their children were. It made me stronger than I ever thought possible.

A year today, the 21, they whisked my baby away to the holding area of the operating room. There, I waited with my baby for the surgeon to brief me on what the procedure was. He came in with the anesthesiologist and another doctor. They explained to me that they needed to collapse his lung in order to be able to remove the tumor. They also explained how the tumor was so big that they couldn’t do a bioscopy surgery and they actually had to cut him open to remove it. They left and then came again and told me they revised the strategy and they would no longer have to collapse his lung. So after that the lovely nurse took my baby from my arms and of they went. I went to the waiting area where my mom, Gary, and Gavin were. I wanted Gavin with me to distract me. They had told me that the surgery would take about 5-8 hours depending on how the tumor was attached to the nerves. When the surgeon came out my heart sank to my stomach, but he smiled and said: “everything went perfect, we got more than 90% out which is great, he’s in the recovery room, you can come see him”.

I hadn’t cried the whole time he was in surgery. I knew he felt no pain. As soon as I saw him in the recovery room I collapsed. He had about 6 tubes coming out of his tiny body. He had 2 IVS (one on his foot and one on his neck), he had a central line (in case he would need blood), he had a breathing machine, and a chest tube, to remove excess water and blood from the surgery. He was pretty bloody and I could’t help it. I knew he was “ok” but I wasn’t. Then I saw his scar… His huge scar, the scar that would remind me everyday of his life this day. This kid is so amazing though. An hour later, while I was still crying next to him, he tried to get up, he had been trying to walk for weeks, and actually took his first steps about 2 weeks before all this happened. He looked at me and reached out. I couldn’t help it I needed to hold him and he needed me. I still couldn’t nurse him, but at least a hug was comfort enough. 

The next day, this kid woke up like nothing happened. He was his happy, strong self. He was getting up, eating, and at no point did they have to give him any type of pain medication. He did so good that he was sent home on Friday, 2 days post major surgery! 

We already knew that the tumor was malign, but as sure as the doctors were that it was neuroblastoma, we would have to wait until the following Monday. We went in for the appointment and it was confirmed. The surgery went great but because it was a neuroblastoma cancer, we would need to take some action. Thanks to God he didn’t require any chemotherapy or radiation. His treatment would consist of MRI every month for the first 3 months, then every 3 months and then every 6 and then every year. Every MRI For the first year requires him to be sedated, which means and IV line and anesthesia and recovery time. We also have to visit the oncologist every month, for urine test and blood work. Of course the surgery wasn’t the only procedure he needed. A week later we had to endure an MiGB scan, which detect neuroblastoma cells in other parts of the body. This scan requires required us to give the baby radioactive drops to mark his body inside. After this scan he also needed to get a bone marrow aspiration and biopsy to make sure that the cancer hadn’t reached. Needless to say all of November and December was spent at Cohen’s Childrens Hospital. 

I look back and can’t believe how much this little person has been through in such a short period of time. And he doesn’t even really know. He is the most normal, strong toddler I have ever met. He is ALWAYS smiling, which is incredible because it has fought me to smile, even through the difficult circumstances. A year later, almost $20,000 spent on hospital, anesthesia and co-pays, I realized everything was worth it. 

People ask me all the time, how come I don’t cry. I do cry. I cry a lot, but I really cry of happiness. It couldn’t been a different story, if they had never found the tumor when they did. I could not have my child with me today. I cry of happiness because I need to make sure that he stays happy and that I stay strong, not only for him but also for his siblings. I want to make sure he lives as normal as possible, and being normal includes not having your mom break down and cry every time she bathes you and soaps over the scar on his abdomen. Every MRI, is a stressful time, every time he bumps his head, every time he oversleeps, or every time he cries, it makes me wonder it makes me nervous and it makes me cry. But we, as a family, have to deal with this. We have to accept Gods will and plan and make the best of our situation. That means lots of love, spoiling (probably not that great), and just trying to be as happy as we humanly, possibly can. Because our reality is that our son has cancer and although he cancer free now, his future is uncertain, so we must enjoy the now. 

Today I am taking him to Chuck E Cheese. I want him to remember this day and play and eat to his hearts content. Bad moments in life are hard to forget, but having lots of good moments can cloud them. And I don’t want him to forget what he went, is going to go through, but I don’t want that to be his primary thought. I want him to know he can enjoy life, and be happy. This year sucked in a lot of ways, more than 5 MRIS, countless hours at the hospital, tons of shots and blood work, but it was all worth it because you ARE CANCER FREE.

 ImageImage

So Glenn Mason, I hope that you celebrate many, many, many more cancer free days and months and years. But most of all I hope that you continue to be as happy and as strong as you have been. 

Image

November 21, 2013. Tags: , , , , , , , , . Uncategorized. 4 comments.