On becoming a cancer mom
No tree, it is said, can grow to heaven unless its roots reach down to hell. ~Carl Jung
Just before Thanksgiving of last year, my one year old son Logan was diagnosed with brain cancer.
This is by far the most vulnerable blog post I’ve written, but I feel like this story has been stuck inside me for the last seven months. I couldn’t bring myself to write about anything else, and yet I wasn’t ready to write about this either…until now. As I write it, I can feel a knot in my stomach and my hands are shaky. But I also feel strong. As I have told so many of my clients, it takes real courage to be vulnerable.
In October of 2016, my son was 1.5 years old and I went back to work full time for the first time since he was born. Shortly after, he developed a chronic and painful head tilt. At first we assumed he had just slept in a funny position, but it didn’t go away. Over the next month, our pediatricians ran all the tests they could think of but couldn’t find anything wrong with him. We took him to a craniosacral therapist and gave him as much tylenol as we could justify. Meanwhile, he gradually stopped eating. And my sweet, playful baby became extremely cranky, rarely smiling or enjoying any of the things he used to love to play with. It got so bad that our nanny fired us, saying that he was not the same kid she had met so many months ago. And that he was obviously not adjusting well to my going back to work. I felt awful.
One weekend in mid-November Logan started throwing up. Our pediatrician said there was a bug going around and that if it didn’t pass in a few days, they could prescribe him some anti-nausea medicine. Later that week he had a small seizure in daycare. Luckily I was already there. They had asked me to pick him up because he was so lethargic and they were worried. I was planning on driving him straight to the hospital when I picked him up. But when he had the seizure in my arms, I lost it completely. I was terrified and thought he was dying. The daycare staff called 911. A few hours later, sitting in the ER with my husband, we found out that he had a very large tumor in the back of his brain that was causing all of the symptoms of the last few weeks.
In that one moment, everything in my life changed. My son could die. Was dying, in fact. If it hadn’t been for the brilliant neurosurgeon who operated on him for ten hours a few days later, he would have died. The pressure in his brain was so great that he could barely keep his eyes open. Ten hours of not knowing whether he would make it through the surgery. If they would be able to remove all of the tumor, which had wrapped around some of his cranial nerves. If in the process of trying to get it out, they would inadvertently cause more damage to his delicate little brain.
The next few weeks were a blur of tears, visitors, family flying in and plans being cancelled. I immediately quit my job, and my husband took a leave of absence from his. We spent thanksgiving in the pediatric ICU, Christmas in Children’s hospital, and New Years at Spaulding rehab hospital. Thankfully they were able to remove the entire tumor but there was some damage done to his facial nerves. The right side of his face was completely unresponsive when he woke up, and he was in a lot of pain.
Logan’s entire body was weak and he was helpless as a newborn. Over the next few weeks he had to relearn how to roll over, sit up, eat, nurse, stand, and finally to walk. Since the tumor was malignant, he underwent six weeks of daily radiation therapy after his surgery. Some of his hair fell out. He had a feeding tube placed because he still wasn’t eating. And he was on a long list of medications for various tangential side effects of the tumor and surgery.
There is no way to explain the mess of emotions that I felt during those months living out of the hospital. There were Doctors, nurses and therapists (respiratory, physical, occupational and speech) constantly coming in and out of the room. We had no privacy. We barely slept. It was terrible. And while I would give anything to spare my son all the suffering he went through, somehow it wasn’t all bad.
As my capacity to experience pain grew, so too did my capacity to feel joy and immense gratitude. My husband and I sometimes disagreed about Logan’s care. But we also had months of being together all day, neither of us working. We were surrounded by amazing family and friends who fed us and held us when we cried, and stayed with Logan at night when we couldn’t do it, or just needed a little time to ourselves. We didn’t take each other’s support for granted. We didn’t take our sons’ healing for granted. We got to see him hit every milestone over again, and we celebrated him every chance we got. When he spoke, smiled, laughed for the first time, it was like magic.
We stayed at Christopher’s Haven and met wonderful, supportive, hilarious families who were also dealing with a cancer diagnosis. We could talk freely about how we felt and they understood. They didn’t judge. They didn’t pity. They knew. I felt many difficult things during those dark months, but loneliness wasn’t often one of them.
Logan has continued to make incredible progress. His hair is growing back, and his face has healed to the point where we no longer have to open with the cancer story when people meet him for the first time. His appetite has finally come back and his feeding tube should be coming out next month. He jumps and dances and runs around and climbs on things.
And of course my two year old still drives me nuts sometimes, but it’s because he is thriving. More and more of our issues are “normal” toddler issues. There was a time not long ago when I prayed that those would be my biggest concerns. My sons diagnosis was a reset button of sorts. It put things into perspective. The transition into motherhood wasn’t an easy one for me. And I still have days where I hide in the bathroom and cry. But I know in my bones that our bond is stronger than those moments
This story isn’t over. Logan will be followed by oncologists for the rest of his life, as the type of tumor he had is quite aggressive. But I can honestly say that my life is better now than it was before this all happened. Our family went through hell together and we’re still here. Laughing, loving, living. If that isn’t heaven, I don’t know what is.
Tajah Sahar Schall MA, LPC, R-DMT
I provide somatic (body-based), social justice oriented counseling to individuals, couples and families of all sociocultural backgrounds. I support adolescents and their families through the unique and often difficult time of transition by incorporating movement, nature and rites of passage into the therapeutic process.
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