Caring for a Child With Leukemia
It was February 8, 2013, but it feels like yesterday. I was leaving the supermarket at 10:30 a.m. when a call came in from my son's school. It was already snowing hard as I got in my car; the Northeast was bracing for a blizzard.
The school nurse called to let to me know that my 5-year old son Eli's gym teacher noticed his neck was quite swollen, and that I should come get him and bring him to his doctor right away. I drove straight to school with a car full of food and snacks to stock the house for what I thought would be a few fun days playing in the snow and hanging out inside.
When I got to school I found Eli looking somewhat unsure about the concern he was sensing from the school nurse. My heart started to race. His neck looked like a linebacker's. How could I not have noticed? I called my daughter to the school office and called ahead en route to our pediatrician.
With the snow getting heavier outside, the doctor's office was quiet. We went immediately into a room and in came the doctor. She looked, felt his neck, did a strep test, asked Eli how he was feeling and then left the room for a minute. She came back in with the senior doctor in the practice, which is never a good sign. The senior doctor examined Eli and a serious look washed over her face. I began to feel the panic set in.
The doctors asked me if I could please come with them into the other room, as the kids waited for a minute. She thought it might be cancer. "Excuse me, but what did you say?" A chill went through my body. They called ahead to Yale-New Haven Hospital for us, telling them to expect us within a few hours. I was in a daze, going through the motions, I had no idea what was happening, but off we went.
Now shaking and crying, I tried to pull myself together for just a few minutes, thinking that none of this made any sense, I was just at the grocery store. I collected the kids and called my husband who was in Vermont, already stuck in the blizzard. I called my parents who immediately got in their car. I went home and dropped my daughter at my neighbors, tears pouring out of me: "Can you please watch her while my parents are on their way?"
I packed a little bag of stuff for Eli and myself and got back on the road. With the blizzard in full force the roads were moving, but it was slow and all I wanted was to be there, it's like time stood still. I looked in my rearview mirror and saw Eli's unusually swollen neck. I just don't know how I did not notice--my own child, right in front of me, every single day. How can I not have seen it?
We pulled into the children's ER--they were expecting us. The first doctor came in to check on Eli. Unsure where all of this was going to lead us, we were both nervous and it showed. My heart was breaking as he was poked and prodded by kind, but unfamiliar faces. They started an IV, so that if they needed to take blood from him again he would already be accessed. He was as brave as he could be while entering a world of the unknown, he didn't like how it felt and neither did I.
While we were waiting for results of the and X-ray and CAT scan, my father, who is a radiologist, finally arrived. Aside from his emotional support, it helped to have him there to make sense of the medical talk.
Eli had Lymphoma, but that was just the beginning. The next step would be a procedure to assess his lymph nodes, and determine whether the final diagnosis would be Leukemia and not Lymphoma. The blizzard was in full force and we'd have to wait a few days to get the answers we so desperately needed.
That night we were admitted to the hospital. While Eli was in bed, I paced the hallways in a fog. They were an unknown maze of colors and doors; the faces, sounds and smells were unfamiliar. How did we get here? We were supposed to be home sleeping peacefully in our own beds. But we weren't, and wouldn't be for quite some time.
The next few days of rounds with doctors, fellows, residents, nurses, a social worker and childcare were a blur. I barely slept or ate. I sat on the floor of the hallways at 2 a.m. and wept. I called close friends and family and started to fill them in on what little we knew.
We were finally able to go home for a couple of days only to turn back around when we found out that it was in fact Leukemia, officially called T-cell Acute Lymphoblastic Leukemia, which was in 37% of Eli's bone marrow.
As a parent, I have always felt that it was my job to protect my children, and that if we watch out for them, take care of them, teach them to be good people, it would just all work out. Cancer wasn't in the plan (not that it ever is). I was unsure I was strong enough to handle it not just for myself, but also for Eli and my family.
We took our place at the starting line of treatment, which included chemotherapy, six to eight months of active treatment with bi-weekly visits, followed by two to three years of maintenance and twice monthly treatments and checkups.
Anyone with a loved one who has gone through chemo knows that it is just horrible. Eli went through numerous additional procedures, which included him getting a port, or "button," that will remain in his body for the next few years. The doctors went through the list of side affects, and for the most part, the experience turned out to be as awful as they warned.
We stayed in the hospital for 10 days to get everything started. I wanted to spare him the pain, but also wished for it to all move faster, to know he was further away from the disease and closer to having a normal life again, whatever that means.
I would not leave his side for as much as people tried to get me to. I walked the halls in the late hours of the night worrying about what this all meant to him and to all of us.
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. 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 Asparaginase, Vincristine, Bactrim, Zofran, and the list goes 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. I'd always researched every single thing that had to do with my kids--looked at food labels, checked for recalls on toys--but here I was determining the fate of my child's life with 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 the only thing that comforted him. When he was sleeping, I watched him sleep. Making sure he was breathing okay and feeling peaceful.
After the first couple of months, Eli 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 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 the answer.
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
Orange is the New Black,
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 her brother 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.
From day one friends, family and the community rallied around us. Close friends started a bi-weekly meal train and grocery shopping for us. Every week meals came and the love came with it into our home. There were weeks that would go by where we could not get out of the house for fear of Eli's immune system being exposed to germs.
A text, a call, a hug, a cup of coffee, a warm scarf, a manicure gift card, flowers to cheer up the house, food, Legos (which became his new obsession being cooped up in the house), financial support, and just incredible love is what is getting me through this. With everything big and small that people did for us, the incredible kindness and thoughtfulness overwhelmed me. People who didn't know us appeared in so many ways, and still do.
The intensity of our lives has been heightened. Relationships have been tested. My husband and I have been feeling the pressure, but there's no time for drama when you are trying to save your child's life.
At the beginning of this journey, a friend in the community introduced me to a woman whose daughter had something similar to Eli, and who was also at Yale. She was there for me in every way possible. Her mantra, which I have since adopted, is "forward march." There is no other way. There are no shortcuts, no quick fixes.
No one ever imagines having to go through something like this with your child. We go back to Yale twice monthly now. It's become our new normal. Eli lets the doctors check him out, mostly now with a smile since he knows there are games there to play, books to choose from, and amazing people to talk to and play with.
Eli is the bravest boy I know, and I watch him with wonder every day. I am trying to take his lead and be as strong as he is. Some days it works and others it doesn't. I love to see him smile and laugh and even scream and stomp his feet. He may not remember all of this, and that's more than okay. I will bear the burden of remembering it, and one day that will be okay too.
This post originally appeared on WomenYouShouldKnow.net.
Image: Stop Childhood Cancer sign via Shutterstock