Quarantining before it was Cool…. A Journey with Pediatric Cancer
Quarantining before it was Cool…. A Journey with Pediatric Cancer
All of a sudden, life changed. Much like today. Just days and weeks before we were wrapping up the end of the school year, making summer beach plans, playing baseball…and my 5-year-old boy was missing lots of games because of high fevers.
We went in for an appt, were asked about “cat scratch fever” (to which my husband started playing Ted Nugent’s song behind the doctor’s back as we both thought it was ludicrous). Then, as if a tidal wave hit, we went for blood work, x-ray, ultrasound. The ultrasound was when I knew- we sat and watched the tech measure a 7x11x11 cm mass, quietly leave the room, and come back to tell us not to leave the hospital, the doctor wanted us back in the office. We knew. This was not cat scratch fever.
We were admitted immediately to hematology/oncology, but infectious disease had to sign off until we had real answers. We were put in an isolation room. If the door was open for more than 5 seconds an alarm went off. Doctors and nurses had to suite up before coming in. Masks covered their faces, they were poking and sticking our boy, and scaring him to death. Those faceless doctors, while trying to help, seemed like robots to him. We were wheeled through back hallways to surgery with escorts and not allowed to go back with our boy while he was sedated for biopsy. It was a week I would rather forget. But… #trauma. It’s a joke now…. But I “stayed strong” and “just did the things” until that first night, after around 13 hours of being tossed around and finally, in our room, I ordered French fries… bc healthy coping skills…. And they arrived. Cold. And I absolutely lost it.
Fast forward about a week (a lot happened but that’s for a different day) but we were at home waiting for answers. It was our twins’ 6th birthday the next day…we also had our oncologist appt. Sooooo much like many of you these days, we had to improvise. I ordered pizza, Shipt in some soda and plates and invited neighbors and friend’s for an impromptu backyard birthday party because we did not know what the future held for our family. It was exactly what the doctor ordered.
We arrived at the doctor’s office scared to death. We had read all that the internet had to say about our boy’s symptoms. We had “worst-case scenarioed” and tried to ground in reality. We had an idea of what we were dealing with but still needed the tests to confirm. (See the similarities already here to life today….)
We arrived to a banner, Legos, streamers… a birthday party IN THE ONCOLOGIST’S exam room. We:
A) We had never met these kind strangers before
B) Knew we were in the right place
C) Knew life had changed… we were celebrating at an oncologists office
D) Got answers. It was cancer. Hodgkins Lymphoma. Stage 3b, entire lymph system, liver and spleen.
E) They couldn’t give us an “end date” (all humans love end dates, whether it be cancer or corona)
To say being diagnosed was the most relieving moment of those months sounds backwards… but it was. We knew what we were facing, we just didn’t know how. And just like many of you today, our life changed that moment, because:
A) We were told to limit social interaction
B) Always have bag packed in case symptoms got too bad or he got a fever (what even does that mean, how bad??)
C) Get ready, you are in this for the long haul
D) Friends would drop off food, outside, and we would leave thank you notes…outside and wave from inside
E) We didn’t know how long this would last
F) We couldn’t be more than 30 min from the hospital at any moment without permission from our docs (and that was under special circumstances)…. We used a pass once… and it required lots of planning.. including isolation because our other son had a fever and too many logistics (again, for another day)
We began treatment, we had long weeks on and off of hospitalization and treatment. WE WORE MASKS! We kept to ourselves at home unless outside. Our saving grace for the summer was the pool. Germs not easily spread. He had a port surgically implanted in his chest that allowed him in water. And he got so many ear infections the doc wrote in his discharge paperwork one time that “if he gets one more ear infection I am going to lose my mind”. Well, folks, my boy wanted to swim when he wasn’t in the hospital, and so I let him swim, and the doc did not lose his mind as he had previously stated… I reframe to say I just gave him a challenge :-)
We had to tell him our son he couldn’t go on our family beach vacation, which meant we divided and conquered and created a new “vacation” for him. We had to change our whole lives, working from home, or the hospital, juggling child care duties, saying no to so many things, relying on friends and family and neighbors to help us. There would be no attending weddings or parties or being around anyone with a cough. Taking it day by day, rarely knowing what the next one will look like. The simple act of a friend dropping off Dunkin Doughnuts coffee and doughnut holes was considered the highlight of the hospital days. Something we once took for granted.
Again, much like life today, it was unknown times. The hospital staff from janitors to the coffee staff to doctors became our friends and relied upon lifelines. The doctors and nurses were our family’s heroes. They masked up and suited up thankfully with enough PPE to protect themselves from the very chemo being pumped into my boy’s veins to save his life.
Friends… my boy is in remission. It ended. COVID-19 will end too. We still have check-ins, scans, scares when a fever comes… “what if”. What if this cough is coronavirus, much like “what if” this is relapse. I know this feeling all too well. I have been there. Fearing the unknown, in a life-or-death situation, needing the doctors and nurses to save his life. Our lives.
I also see the other side. He made it. We made it. I see his smiling face (or… let’s be real… sometimes grumpy face) every day and am grateful for his life. I know the reality that we still have to face the aftermath of chemo and the trauma that he, and our whole family, experienced during that time. I also know the reality that once this bout with COVID-19 ends we will face the aftermath of this traumatic pandemic…. not to mention the trauma during.
Strangely, like many people with pre-existing anxiety today, we had trained for this quarantine and time of unknown. Those with anxiety know the fear of the unknown already. When picking up our kids from the Congo during and adoption crisis we booked a one-way flight to with no answers as to really how to get them home… we were in complete isolation for 3.5 weeks in a guest house in a foreign country, surrounded by a warring country. We were creative with food, entertainment and enjoyed the local beer. It was lonely. We had intermittent electricity and communication. We did the thing (somehow). There was a lot of unknown. There was eventually an end. This too is a story for another day.
We can do this. It will be hard. It will end. Feel the feels. If you can’t feel the feels, let me deliver you cold French fries and we can see if that evokes emotion for you as it did me. Connect with others in inventive ways. Have impromptu Zoom birthday parties or deliver doughnut holes to someone’s doorstep. Acts of thoughtfulness during this time will be implanted on other’s hearts for a lifetime.
Sending all the virtual hugs, and “we can do this” vibes I can muster,
-Mary Ann Sokolowski, Mother of Tris Sokolowski, 2019 Nashville Boy of the Year