[Pictured: Jake at age 5 and 18, bravely fighting his battle]
Overwhelming and surreal. That’s a good way to summarize a prolonged in-patient stay on a pediatric cancer floor. There’s a world you enter that doesn’t feel like reality. Everything else fades away. You feel emotions — a diverse and crazy bundle of fear, love, sadness, hope, faith, trust, worry and more, but your attention remains inside that bubble. You only feel the consuming and instinctive focus on your child. The emotions are so strong that exhaustion sinks in, but you aren’t really tired. You survive on adrenaline, I suppose. It’s powerful. Your child needs you and you are there 100%. The experience stays with you — in both haunting and uplifting ways.
We were just in the hospital for almost four weeks. The same cancer hospital on the same pediatric cancer floor where we began our journey 13 years ago. Jake was 5 years old when he was diagnosed with cancer (leiomyosarcoma) in his foot. He had just turned 18 before this recent surgery, so much older, but those parental emotions had not changed. That instinct to care for and protect him remained as strong as ever. Because of the seriousness of his surgery and several complications that arose, this was the hardest hospitalization we’ve had to date (out of more than a dozen). Unexplained high fevers, serious infection, medication problems, constant IV problems, and severe pain made the initial recovery all the more difficult. To complicate matters further, we had to stay awake around the clock (for four weeks) to monitor Jake’s tissue transplant site to make sure the blood supply was not interrupted. At best, the consequence of failure would be a risky 12+ hour surgery in an already weakened state, but more likely a full amputation of his foot. Needless to say, the stress levels from the seriousness of it all, combined with next-to-no sleep, created an incredibly intense situation. I stayed with Jake pretty much 24/7 for the entire month he was in the hospital. Luckily, his dad was there to help for ten days and my sister was there for the remainder. We are now home and so thankful that Jake’s transplant is no longer vulnerable to failure. He still has a long way to go for total recovery … but something has been pulling me to write about the experience.
I’ve been trying to figure out why I want to write and what exactly I want to relay. There are so many dynamics of the situation, so many beautiful, inspiring, powerful and heartfelt moments. There are so many sad and devastating moments as well. The situation changes you – your perspective, your focus, your appreciation, your patience. Some of this is good, I think. Some of this I wouldn’t wish on anyone. Overall, it’s a unique story to be told.
I’ve decided to begin with some of the joyful moments to lighten the tone here a bit. While every child on the floor is struggling with cancer or a medical need arising from it, there is an unbelievable testament to the human spirit that exists. Children, parents, doctors and staff seem to rise above and make the best of it all. In spite of the fear and pain, you still see laughter and smiles. Overall, you see kindness. It’s overflowing. Everywhere. I’m a firm believer that kindness makes the world go around so this truly touched my heart. It was almost palpable and it was beautiful.
Parents of all different cultures populated the halls or kitchen, or waited in line for one of the two bathrooms. There was a quiet camaraderie among the parents. We all looked (and clearly felt) fairly shell shocked, but we all soldiered on for the sake of our children. Parents smiled politely to one another, or shared tales of their child’s journey, or offered words of love and encouragement. I’ve never seen such kindness among strangers as I have on a pediatric cancer floor. The little burdens of everyday life or the differences between people just don’t matter. It was clear that a shared love and concern for your struggling child takes center stage and bonds you in a unique way.
There were so many touching and heartfelt moments that it’s impossible to share them all. There were encouraging signs written on young patient’s windows — YOU GOT THIS, FEARLESS, FIGHTER, and more. [Incidentally, our favorite sign made us giggle each time we walked by. It had serious rules in small writing – high risk: must wear mask, wash hands, etc. Above those, however, in huge writing it said NO CLOWNS. That fear of clowns (understandable in my opinion) trumped the medical directions!] There were flowers and balloons everywhere. There were children with little-to-no hair skipping down the halls as parents chased them. There were famous visitors who took the time to bring smiles to the children’s faces. There were family and friends coming and going to lend support. There were homemade buttons, wristbands and shirts with sayings like #teamjake. There were volunteers helping in every way imaginable. There was a candy cart that went room to room with an incredible assortment of free snacks. There were donated knit hats for the bald patients. There were happy deliveries of packages and mail.
The sweetest and most specials parts though involved the people. Our absolute favorite person was a loud, feisty Ukrainian nurse’s aide I will call Alice. She was awesome! You always heard Alice when she entered the room. She called the kids “sweetheart” or “my love” in her thick accent. She made them feel special even when she was doing the most unpleasant of jobs. At one point, Jake’s doctor was called away for a family emergency. His partner was supposed to take over care. When Alice came the next day she immediately asked if the new doctor had come and what he had to say. When we told her he never made it, she blurt out (in her strong Ukrainian accent) “that fucking asshole.” Her intense response surprised us and made us all laugh, but we were touched that she cared so much. She was irate again days later when another nurse failed to give Jake his bath (though for good reason). She noticed that his hair did not look clean and immediately began mumbling and cursing under her breath. “This is not acceptable. My love needs a bath. I will do it right now.” Jake was not even her patient that day, but she went out of her way to make sure that he was properly cared for. Every day, in her unique and protective ways, she made our lives a little better.
Another bright spot in the journey was a handsome and highly fashionable doctor who lightened the room the moment he entered. He was silly and hysterical. The best example is demonstrated in how he responded to Jake’s task of “dangling” his foot at controlled and short intervals to help restore normal blood flow to the transplant site. The first time Jake did it, Dr. G said “OK, I’m supposed to ask how the dangling went, but can’t stop giggling about it. I have the mind of a teenage boy and the word dangle just brings up other images to me”. He indeed giggled about it every single time – and so did we. His silly humor was amazing medicine in light of the difficulties.
We constantly encountered special people in all areas of the hospital. A male nurse and one cleaning lady always stopped to talk with Jake about basketball when he was feeling up to it. Another cleaning lady cheerfully mopped and changed trash announcing how happy she was to make the space more pleasant for us. A doctor drew tattoo-like pictures on Jake’s leg to add some fun to the crisis. A nurse practitioner who, despite her busy schedule, sat for 45 minutes and cried with my sister when things were tough. The nurses or other workers who constantly spent time with us, sharing their own stories, giving out hugs, and helping us not feel so isolated. This list goes on and on. The people in the hospital (including parents and workers at every level), with their positive attitudes and overwhelming kindness, made a very stressful and exhausting situation so much more bearable.
Unfortunately, incredible sadness and heartbreak permeate a pediatric cancer floor as well. There is no escape from the hardship these children face. There are varying degrees of severity, but each child is struggling. Some are pale and weak. Some are vomiting or crying. Some are bandaged and bloody. Some can’t walk. Some can’t leave their rooms. You have a deep pit in your stomach and desperately wish you could help. Children should not face these horrors. No one should face these horrors, but especially not children.
Of course, watching your own child in tremendous pain or feeling sick on an unparalleled level is gut wrenching. You’d give anything to make them better, but you just have to stand by offering love and encouragement, praying for the best. In addition to the traumatic medical situation, the children are all struggling with their absence from the normal world too. They miss their friends, their homes, their families and pets, their every day lives. They are frustrated that they can’t participate in normal activities. The physical and emotional challenges these children face are terribly unfair.
I mentioned that Jake had just endured his most difficult surgery and hospitalization to date. I kept a smile on my face for his sake, but it devastated me. I watched helplessly as he bravely faced ongoing and incredible pain, exacerbated by one challenge after another. I constantly marveled at his courage and his kindness toward everyone around him though, even when things were at their worst. It’s such a horrible feeling to witness someone you love hurting so badly. Sadly, there was a similar tale in every room. We remained very aware of the suffering all around us.
A little girl down the hall was in isolation, but you could see her through the room window. She looked weak and frail. She had family with her at all times. One day we heard doctors talking about a certain treatment plan for her. The next day, we saw at least a dozen family members and friends who had come to say good bye for the last time. They were all in tears and hugging one another. The next day, her room was empty.
One of Jake’s roommates was a sweet 18 year old boy who had just joined the Navy when he learned he had terminal cancer. He was only given three months to live by his hometown doctors, but had come to New York because options were available to help prolong his life. He had already made it past the three month prediction, but he was very, very sick. He had surgical wounds, equipment, bags and tubes everywhere. His family didn’t stay with him much and he was very often alone. He’d ask us to open the room dividing curtain so he could be with us. He also called to us through the night for help. Eventually he contracted a serious infection and had to be isolated. It truly broke our hearts to know he would be by himself. It was hard to leave him and change rooms, but there was nothing we could do. We were so glad when Jake heard from him a few days ago. He’s still fighting, but we desperately wish there was more that we could do.
You can’t help but wish you could do more for all of these kids. Cancer is unfair and it’s brutal. The pain, sorrow and fear are devastating. The children who struggle through the treatments are true heroes. The doctors, nurses and hospital workers are heroes as well.
My sister (who selflessly stayed in the hospital with us for three weeks) posted something on social media that speaks volumes. She was partly (and very kindly) referring to us, but her words capture so much of what takes place.
What is courage??? Courage is knowing the only way to take a step forward is fighting your way through the grueling pain that comes with the medical treatments that will make you better. It’s doing so with so much good spirit that the nurses literally fight over who gets you for the night. It’s taking every set back with grace. It’s watching your child suffer and still smiling and helping the others around you who are also in your situation. I am so proud to be related to Cindy and Jake and so honored that they trusted me enough to be their wingman. My heart goes out to them and all of the wonderful and courageous people we met these past weeks. We have seen things no one should ever see … my heart goes out to all who have been touched by this awful disease, especially the children on the 9th floor.
Certain words stand out to me — courage, grueling pain, suffer, smiling, trust, heart, awful disease. The strongest feelings and words are represented on a pediatric cancer floor at all times. It is indeed a mix of brutality and beauty. You see the strength of the human spirit and limitless love and kindness. I try to focus of those aspects and continue to seek the light. I don’t always succeed and there are definitely moments of pity and sadness, but I try. I think I’ve realized why I felt the need to write about this: to remind myself (and maybe others) that in spite of a very harsh world, its so important to lead with kindness, gratitude and love. In the end, that is what matters most.