And so our travels back and forth to Yale began. A 45-minute drive that felt torturous. Eli hated going and was terrified when they had to access his button. He screamed and cried. It was all so new. He threw up a lot. I kept towels and wipes everywhere. He was tired. We were all tired. The doctors tried to manage his nausea with more drugs. The names of drugs I learned in the first month made my head spin. Peg Asparagense, Vinchristine, Donarubicam, Bactrum, Zofran, the list goes on and on and on.
After the first month of induction they tested Eli’s bone marrow again. This would determine the course of the next phase of treatment. The drugs did their first great job and he was put in the low risk category and would not need a bone marrow transplant or radiation. I think it was the first time I was able to breathe.
Doctors suggested we enter a study for a drug called Methotrexate. It was a randomized study and Eli ended up being in the group where he would get a high dosage of the drug, while staying in-patient for four days at a time for four cycles.
There’s so much to take in and so many decisions to be made. As a parent, I researched every single thing with my kids, looked at food labels, checked for recalls on toys, so here I am determining the fate of my child’s life and I have no firsthand information, and no way to know I was making the right decisions. We had no option but to release ourselves and take comfort in the incredible care of one of the best hospitals in the country.
The first few months sucked. There’s no other way to put it. It was winter and we were inside a lot. He felt like crap and it made me sad all day and all night. When he was awake I would lie next to him with my hand on his head, since that is only what comforted him. When he was sleeping, I watched him sleep. Making sure he was breathing ok and just peaceful.
After the first couple of months he started to get headaches and the doctors decided to do a MRI and then an MRV (of the veins) and noticed a small clot in a vein in his head. Apparently it was one of the potential side effects of the chemo. From that day forward I had to learn how to give him shots twice a day. I gave him approximately 550 shots and there was nothing easy about it. It was always a struggle. His arms and legs were constantly black and blue. He lost weight and gained weight. He grew 2 inches over the year. Yet every single day I wonder “how did this happen and how did we get through what we got through so far?” I’m still not entirely clear on what my answer is.
Usually an avid reader, I could barely concentrate on anything. So when I couldn’t sleep at night I plowed through all of the episodes of Breaking Bad, Weeds, Orange is the New Black, Homeland and House of Cards. It was the only way I could escape what was going on in my head. I didn’t exercise, I didn’t eat as well as I should have, I didn’t get out, I just couldn’t focus on me. This is probably not what I should have done, but my head was not there.
The only thing that mattered was Eli and his big sister Charlie. She was also feeling the affects of this. She was as brave and strong as she could be. She knew he was sick and weak, but she also saw him getting a lot of attention. I showered her with as much as I could give. The school psychologist developed a close relationship with her providing her with a safe place to talk and let out her feelings. I was grateful, since the juggle and struggle with it all was mind-bending.