I apologize for the dumb title but, well, just watch it. Shawn picked out the music. This will be my shortest post ever because I have nothing to say other than this video. This was Shawn’s last day in radiation. Chemo was up next but this was a really big deal. I upgraded my WordPress account to the paid version so that I could post this video.
If you scroll through my past posts, you can find anger and frustration. Lots of it from Shawn and from me. As recently as last Monday, I raised my voice here. Loudly. We were in the ER. At that time, and now looking back, I believe my anger was justified. Other times, in retrospect, my anger was not justified. Shawn’s anger was always justified. He has been dealt a bad hand and it took some really good people a really long time to figure out what to do with that. If anyone has a right to be angry, it’s Shawn.
During radiation, Shawn transitioned out of anger and into something else. Happiness? Hope? Relief?
We arrived at CHOP on Monday morning to begin Shawn’s chemotherapy. He would begin in the clinic and move to the inpatient floor as space and time allowed. Our primary doctor in neuro-oncology was out of town at a conference so we’d planned to see an attending that we have worked with most in the past. But she was unavailable so we saw a different attending. She was amazed by the change in Shawn. We have worked with her, too, but not since Shawn turned happy. And also not since Shawn turned healthy. I mean, other than the cancer. Which is still there. Waiting. Silently. This doctor used that term. Silent tumor. It’s there but not there. It’s there but we can’t see it and we never have, not as a primary tumor. Shawn would call that a Ghost Tumor if we asked him for a name.
That morning the oncology clinic was overtaken by a foundation called Michael’s Way. I can’t tell you much about this group other than that, like many organizations, they appeared in our lives at the exact right moment when we didn’t even know we were looking for them. We checked in at 8:55AM, a few minutes before our scheduled arrival time. People were wheeling in carts of pizza and soft pretzels and cookies and bottles of water and juice. Professional photographers were scoping out their space. Shawn looked on excitedly as a Giant Connect Four game was being set up. “Can we play that?” he asked. “We’ll see” was the only response I could provide. Promise nothing and hope for the best has become my only answer in pretty much every situation here.
My goal for myself for this admission was to not be angry. Actually, my goal was to not show anger. Time after time I’ve begged myself to not be angry. To not overreact. To go with the flow. I’ve failed every time, including last Monday in the Emergency Department. When I reacted with anger at a situation that a supervising nurse practitioner ultimately apologized for and wrote up some sort of report and told me that they are working to try to resolve the problems that caused this particular incident, I watched Shawn as he sadly asked me to stop arguing. The look on his face reminded me that, again, my reaction was justified but that I was right at what cost? What did it fix? What did it harm?
I decided that I would fake happiness. Not in an artificial way, although it would probably be somewhat plastic. I can’t usually control how I feel. Most people can’t. At CHOP I certainly can’t control most of what happens to us. And not feeling angry is probably going to take some more time. But I decided that I can control how I act and react.
The first two days went smoothly. Way more smoothly than my nightmares had anticipated in the weeks leading up to this. I was in a groove of faking happiness and it wasn’t even all that hard. The oncology floor is unexpectedly calm and quiet. Those haggard looking parents and grandparents I’d previously observed in the elevators getting off on Floor 3 now just seemed to be people doing things in a very matter-of-fact way with their mostly happy looking kids. Parents getting off on Floor 3 (with me) now seem less haggard than when we lived on other floors. Less stressed. Less angry.
The Oncology floor is, so far, pretty quiet. Boredom has been our biggest complaint. He is experiencing some side effects of the chemo (vomiting and diarrhea) but so far it’s been less than he’s had in previous admissions when he was so sick and they couldn’t figure out why. Back when we were treading water. Shawn has been relatively unimpressed with chemotherapy so far. “The external shunt on the PICU was WAY worse!” he tells me. We played bingo. We played games with volunteers. The same people he used to grunt at and shoo away are now fun.
This morning, day three, I finally had a chance to employ my Don’t-Show-Anger plan. If I were a teacher at this, I’d give myself a C-. Passing, but barely. Shawn got angry shortly after his breakfast arrived. I don’t know why and neither does he. A bacon and ham omelette ultimately ended up on the floor and walls like so many meds and food before. I raised my voice. I yelled at Shawn. The nurses came in. They closed the door. They told me it was ok. The doctor later told me that it might be a reaction from the steroids they’re giving him to help with the potential reactions to the chemo. I was embarrassed. We’ve been here before, without the drugs. I’m still so unclear about discipline issues at the hospital. How to react. What to do. How it’s different than at home. How to parent here in this artificial parenting environment. If there’s no manual for how to be a parent in the outside world, there’s certainly no guidelines for what to do here.
I’m hesitant to write this, because this is the kind of thing that when everything goes to shit in a few hours I’ll regret and want to come back and retract, but so far this has been one of our easiest admissions. Little drama and even less trauma. My current internal question for myself is – has this admission been easier because I decided to be less angry or am I less angry because this admission has been easier?
The kids finish school this week. The last day for the district is Friday. We had only one or two snow days this year so they will finish as scheduled, unlike the last few years. Lilly’s last day is Friday. Shawn will finish on Thursday since he’ll be in surgery at CHOP on Friday. He missed the last day of school and the first day of school. In between those those days was an unusual first grade experience.
Lilly is “graduating” from fifth grade. No more elementary school for her. As of Saturday, she will be a Middle Schooler (god help us all!) although the kids call the time in between grades “summer grade” rather than placing themselves in the next higher grade, like I eagerly did when I was a kid.
Shawn is finishing first grade. Well, sorta. Shawn didn’t attend more of first grade than he did attend. I lost count and can’t easily look it up but I estimate that out of 180 days that the kids were supposed to be AT school,
Shawn missed at least 100 of them. Probably more. But in late May, sitting on the floor in our living room with his home-instruction teacher, Miss Johnson, Shawn officially completed the assessments that indicate that he knows what a first grader in our school district is expected to know. I admit, I’d been concerned about this. Shawn had been a smart and interested but average student throughout preschool and kindergarten. He wasn’t “advanced”. This stuff doesn’t come naturally to him. He needs help to learn. He needs school. And he wasn’t there more than he was there. There were weeks that went by that he didn’t even brush his teeth or eat, let alone do anything academic. But here he is, finishing first grade.
In retrospect, Shawn’s earliest obvious symptoms showed up the first week of summer vacation last year. I took a week off from work to hang out with the kids and on Monday we set off to explore caves and coal mines in central Pennsylvania but Shawn got sick in the car while getting gas and breakfast less than a mile from the start. We went back home. The first of a series of “car sicknesses” and “stomach bugs” that would follow him throughout the summer. The vomiting that in mid August would still cause me to say “at least we’re getting the sickness out of the way before school starts in a couple weeks” and eventually take him to his pediatrician by the end of the month because something seemed really wrong by then. By the second week of the school year, we’d begun our CHOP adventures. It would be almost seven more months until we figured out what was actually wrong. Shawn would become very angry during those months. He would respond well to only one category of CHOP people – his teachers.
As the admissions piled up in September and October, I diligently called the school to report each absence and sent in the Discharge Papers and the Return To School notes signed by a doctor. I always asked to pick up Shawn’s homework with the intent of keeping him on target with what his class was learning. Maybe not all the way but as best as we could when he was feeling ok. We practiced spelling words and did math problems and read books from the play room on 9 South when he was feeling ok.
One day while I was out running at CHOP in October, I got a phone call from his school. His homeroom teacher, Mrs. Klein, and principal, Mrs. Gregitis, were calling to discuss a more long term plan, the kind that they create for kids who are out for extended periods of time. I slowed to a walk and talked with them. “Don’t worry about the homework,” they said, “it’s intended to reinforce what’s being taught in the classroom and he’s not IN the classroom.” They gave me some things to focus on instead. We initiated the process to start hospital instruction.
Later that month, during Shawn’s longest straight admission, he began working with a hospital teacher, Ryan. For the first time at CHOP, Shawn was engaged, responsive and happy. He looked forward to each day’s hour with her. She told us how wonderful it was to work with our school district, how responsive they were. When we went back to CHOP inpatient in January, I was disappointed to find out that Maria would be our new teacher, not Ryan, since Shawn liked Ryan so much and he responds best to people he already knows. But he instantly loved Maria, too. He loved all his teachers and I began looking forward to it as the time that Shawn would be happy. When Shawn refused to cooperate with the doctors, I told them that if they want to watch Shawn’s speech, movements, and behavior, come watch him when he’s with his teacher. They’ll see everything they are looking for.
By March we knew that the root of his problems was cancer. A cancer diagnosis opens a lot of doors for a sick kid that being undiagnosed does not. One of the social workers asked if Shawn might be interested in the Monkey In My Chair program. When we explained to Shawn that it means that a big stuffed monkey would sit in his seat at school when he wasn’t there, he excitedly said yes! The monkey came in the mail a couple weeks later. Shawn named him Happy.
It was a terrible year filled with numerous hospital stays, a lot of pain and sickness, and, well, eventually a cancer diagnosis. Childhood probably doesn’t get much shittier than all of that. But other than his family, his teachers were the people he loved the most throughout this year. Even when he pretty much hated everyone else.
“What kind of cancer does he have?”
When I get that question, I answer it. At first my answer was “Primary Disseminated Embryonic Tumor.” Later it shifted to “PNET – Primitive Neuroectodermal Tumor.” Often followed by quizzical looks from people with knowledge of childhood cancers. “He has what? What does that mean?”
The rare presentation of Shawn’s disease is what caused it to remain undiagnosed through 13 admissions over 7 months. He does not have a primary tumor. There is no discernible mass that can be seen on an MRI or CT scan or any of the other scans he had over that time. As the doctor explained it to me, when the cells began dividing they immediately spread out throughout his entire central nervous system. Like rebellious teenagers. At some point, tiny nodules formed on some cranial nerves and one on his spinal column and eventually the neurosurgeon decided that the benefit of attempting to biopsy it finally outweighed the risk of doing so. She was able to get enough tissue for the pathologists to get the broad diagnosis and confirm the malignancy but we would never know exactly where the cancer started, where the “primary tumor” was. And that location is what gives the more granular diagnosis. There wasn’t enough tissue, I was told, for the doctors to be able to do genetic testing on the little tumor. It didn’t really matter, she said, because the treatment is the same for the different types of PNETs and the apples-to-apples comparison isn’t the location of the primary tumor but that the cancer was already disseminated. That’s the part that matters most for the prognosis and the aggressiveness of the cancer and the treatment. His cancer cells are “really smart.” They learned early how to travel throughout his central nervous system and evade detection. They might be harder to get rid of. And we won’t ever really know if they are gone. We’ll do the treatments, we’ll monitor his symptoms, we’ll do regular scans for years. That’s the best we will be able to do, at this point in history anyway.
On Thursday Shawn’s doctor called to tell me that they had been able to do genetic testing on the cancer cells after all, and that the results were in. I grabbed my computer, opened Notepad, and began writing as she talked. This is what I wrote:
Chromosomes 4, 7, 17, 11
duplication of chromosomes 7 and 17q
Groups of 3 or 7 b
High risk and harder to treat.
So now I have more stuff to Google. And so do you, if you’re interested. I’m not going to try to claim that I fully understand it all yet so I’m not going to try to summarize what it means. What I do know is that his doctor told me that it’s very likely that Shawn’s cancer type is Medulloblastoma. That the first cell to “mutate” (although it’s my understanding that “changed variant” is the current preferred term) did so in the medulla of his brain stem. When that happened and why that happened remains a mystery.
What does it buy us? Not much. Something to google. Less quizzical looks from other cancer parents and patients. Perhaps some level of identity or group affiliation. I started this blog as a chronicle of of my experiences as a parent of a child with a serious but undiagnosed illness. Back then I had almost nothing to google and no way of finding other parents in the same situation. There were three directions it could have gone – infectious, immunological, and malignant. Malignancy, cancer, remained furthest down the list for most of that time. Until it wasn’t. And then it still took two more months to kinda sorta finalize an actual diagnosis.
CHOP, like most modern hospitals, has an online portal that patients and parents can use to track appointments, medications, test results, etc. For most of our time there, Shawn’s “Health History” listed Headaches (noted September 2015) and Eczema (noted April 2009, when he was six months old). He’s always been a pretty healthy kid.
The week of the biopsy, “Headaches” disappeared and only eczema remained. I assumed that perhaps it was in the process of being updated but nothing has ever replaced it. At his last appointment, I asked the doctor about this. She showed me the long list of things that have come and gone from his chart that they can see. It must be a glitch, she said, maybe there’s a tech support number you can call. We looked together and couldn’t find one. She assured me that the doctors and nurses and other CHOP staff can see everything. But every time I log in, I see only the seven year old eczema diagnosis. That’s some pretty complicated and expensive eczema.
Eight weeks ago, when we received Shawn’s diagnosis, we navigated from his room on 3 East at CHOP to Radiation Oncology in the Perelman Center at the Hospital of the University of Pennsylvania so they could map his brain and spine in preparation for the Proton Therapy Radiation. CHOP doesn’t have its own radiation department, they share with HUP. The journey from one building to the other while inpatient is a series of modern hallways above ground followed by elevator rides below ground, through concrete hallways that look more like tunnels under the streets, back up the elevator into the main HUP building, down some more hallways, across the bridge to Perelman, then back underground to the Radiation Oncology department, through the huge room where the mostly older adults are waiting for their own treatment – often with their middle age children along to help, into the little CHOP room where the kids are waiting – often with their middle age parents along to help.
We were both still quite angry at that point, most of all Shawn. The massive inconsistencies of CHOP, the terror of the undiagnosis, and the frustration of the seven month diagnostic process left both me and Shawn distrustful of the entire process.
There are three Types of parents in the little CHOP section of the Radiation Oncology waiting room:
- Those who talk to everyone about everything and clearly want to make connections with other families.
- Those who will happily talk to others but will also happily read by themselves.
- Those who stare at their phones with headphones in their ears listening to nothing just to make sure that no one talks to them.
Seven weeks ago I was Type 3.
Seven weeks ago Shawn was still grunting and kicking his way through any procedure at the hospital and at anyone with a CHOP badge.
Six weeks ago we started Proton Therapy Radiation. The first of a series of treatments that will hopefully kill the cancer cells that have invaded Shawn’s brain and spine.
Five weeks ago Shawn listened to a person in the big waiting room ringing the Ship’s Bell, a ritual in the cancer world after completing a stage of treatment. Everyone in the room clapped and cheered. He asked what they were doing. I didn’t know so I found out and explained it to him. He said he hated the sound of that bell and didn’t want to do it when he finished radiation. I said he didn’t have to. I personally thought it was stupid. What’s the point of that? Back to my silent headphones after Shawn had his daily anesthesia and got wheeled back to poison his head and spine.
Four weeks ago Shawn made a friend. A five year old girl finishing her second round of treatment for rhabdomyosarcoma. I chatted with her mom while Shawn talked to the kid. I don’t remember either of their names but the mom said that they were doing chemo next, through December. We’ll see each other there, we said. Later we heard that girl ring the bell from Shawn’s recovery room. Considering the odds/prognosis of round two of treatment for rhabdomyosarcoma, I am edgily anticipating seeing them back on the 3rd floor at CHOP. And after that conversation I realized that I’d slipped into being a Type 2 parent in Radiation Oncology.
Three weeks ago I met a Type 1 family from Virginia. They are in Philadelphia so their kid could get radiation treatment with the Proton Therapy machine at HUP. They have four kids, the youngest in treatment, the next older two along for the ride, the oldest was at home with relatives because he needed to be in school. They knew Shawn. They talked about things Shawn had done on previous days. The radiation Child Life Specialist, Melanie, had given Shawn a Chemoduck early in week 1. That week a nurse called it “ChemoChicken.” I corrected her, “it’s a chemoDUCK,” I told her. She laughed and told me that Dr. Joe had mistakenly called it a chicken so it became a thing to call it ChemoChicken. Oh. A joke that I didn’t get because I was at work, keeping my insurance and at least some pay, pretending to be doing useful things there while it was killing me not to be in radiation with Shawn, learning the inside jokes, getting to know the nurses, doctors, and other families, being his mother. I looked forward to my CHOP days and dragged myself out of bed on my non-CHOP days.
Two weeks ago I learned that Shawn had named his stuffed parrot Melanie, Jr. He excitedly explained to me on Monday night at home that Melanie’s favorite color is green and that she had dressed up as a parrot for Halloween. So he named his stuffed parrot after her.
One week ago I asked Melanie if she understood exactly how big of a deal it is to have Shawn name one of his stuffed animals after her. This is the kid who previously hit and kicked and yelled at anyone who dared to ask about his animals, let alone touch them. To name one after a person with a CHOP badge?
This week we finished radiation. The transformation that Shawn experienced was nothing short of astounding. The kid who eight weeks ago hated everyone and everything cried this morning because he was sad and excited that this phase of his treatment was over. Next up, four months of intensive chemotherapy. We all lingered there a little longer than usual before finally walking out the door. I looked back. Melanie was still waving.
He feels better, physically, now than he did six weeks ago when he was throwing up in his bed and in the car on the way to treatment. He went through six weeks of the most intense radiation therapies a kid can go through. No one expected him to feel as good as he did the entire time. Yesterday Lilly attended a sibling group while I met with the other parents. A mother who’s daughter finished her own radiation in our second week said that she remembered Shawn because he and her daughter both appeared so healthy among all the really sick looking kids in the waiting room. The fact is, it’s an illusion. We don’t know how healthy Shawn is or isn’t, and that family is probably heading across the country for a last and best effort clinical trial to try to save her life.
The real transformation, the true renewal, was in Shawn’s approach. His outlook. His attitude. His outreach. His friendliness. His hope. Shawn was the first one to become less angry. I followed.
This morning the kid who previously said that he hated the sound of the ship’s bell proudly led everyone out to the big waiting room this morning and rang it. Twice.
Postscript – Shawn allowed me to post all these pictures, and I hope the CHOP people are also ok with it. This is the first time I’ve posted pictures on this blog that included any of our faces. That’s not an accident.
My last post was based on a race that I’ve historically had little interest in. This one is about a race that I care deeply about.
I ran my first Broad Street Run on May 7, 2000. I’d started running regularly again the year before and by February of that year, I found myself running 6-7 miles at a time and loving it more as the distances got longer. Running had become something I did because I enjoyed it. I saw an ad for this 10 mile race down Broad Street and thought, “that looks like fun, I wonder if I could do that.” That might have been the moment that running became a passion, a step up from a hobby.
Sixteen years and 13 Broad Streets later, it has become something that I can trace my life by. I was a 27 year old single woman with no kids the first time I ran it. I’m now 43 with a family. I’ve finished in the top 5% and the bottom 25%. I’ve run it pregnant with both kids. It’s been hot, cold, sunny, cloudy, windy, although it’s never rained. I’ve run it as a capstone to a 90 mile week during peak marathon training, and it’s been one of only a handful of runs I’d done in the previous month. It’s the only race that I will run every year that I am physically capable of running 10 miles. I don’t think that I can adequately describe exactly what this race means to me. When I turn left from Olney Avenue and walk onto Broad Street and look down the wide empty street toward City Hall, I get goosebumps and smile silently every time. Lots of things change in our lives from year to year and decade to decade. But standing at the start of the Broad Street Run on the first Sunday in May is a consistent ritual for me.
Then one year everything changed.
Independence Blue Cross has been the title sponsor of The Broad Street Run since I’ve been a part of it. It’s also my insurance company. The one which has paid almost $2 million so far in pursuit of a diagnosis and now a treatment plan for Shawn’s cancer. In early February, our team at CHOP brought in a social worker to one of our meetings. I’d been growing increasingly uneasy about how we were going to be able to pay our bills now that I was out of vacation days at work with no end in sight. The social worker put me in touch with an organization called Fred’s Footsteps. They provide financial assistance to families in situations like ours, who were previously doing ok but a child’s serious illness causes major gaps in income. They want parents to be able to focus on their child’s care instead of worrying about money. The organization was founded in memory of Fred DiBona, CEO of Independence Blue Cross, who died of cancer in 2005. There’s a picture on the Fred’s Footsteps website of him presenting the awards at Broad Street. When I saw that picture, my connection with Broad Street got stronger. I knew that this year would be even more meaningful to me.
On February 1st, I registered for Broad Street from Shawn’s hospital room. Technically I entered the lottery, but since I’m considered a veteran runner, having run the race ten or more times, I’m guaranteed entry.
On April 28th, I read this article about the Broad Street race director’s own recent battle with cancer, and how his own father’s cancer inspired him to get involved in the race. Jim Marino is well respected in the running community. I was floored by what I read there and the additional connection that I now felt with Broad Street. I wrote to Jim that night. I don’t know him. We’ve never met. I wrote to him to thank him for what he’s done and to tell him about what Broad Street means to me and why, and the reason that it’s more meaningful this year. I didn’t expect to hear back from him, at least not for a week or two. He had the sixth largest race in the U.S. to put on three days later, after all. But I did hear back from him. Within a couple hours. And apparently I’m still making people cry.
Bill and I talked this week about the logistics of race day. We had both been watching the forecast and saw the rain. Surely that will change, we both agreed. It doesn’t rain on Broad Street days. But lots of things are different this year. Maybe this is one of them.
Then there’s the issue of the shirt color. Each year that I’ve run, the race shirt has been either blue, gray, or white. A few years ago I noticed a pattern. Gray shirt years are terrible. I’m usually unprepared and run correspondingly bad (typically when each kid was a baby). White shirt years are in the middle. Never extraordinary, but not usually bad. Blue shirt years can be magical. I’ve set three PRs in blue shirt years, two of them surpassing my expectations. But great races aren’t always defined by the finish time. At the expo while we were walking to get my shirt, I saw glimpses of people’s bags with blue cloth in them. Is that what I think it is? Is this a blue shirt year? How can that be? I have no chance to run well this year. But I trust Broad Street.
I decided to wear one of my blue wrist bands this morning. I still have almost all of them. I chose the one from the admission when we got the cancer diagnosis. It made sense to do so.
My actual running this morning wasn’t great. It felt like a white shirt race in a blue shirt year. I never felt that spark that comes when everything clicks in a race. But I didn’t expect to, given that I’ve been running less and doing no specific training. I’ve got other things going on.
Some things were different this year – I had to pick up my race packet on Saturday since I couldn’t take an unpaid half day to go on Friday afternoon like I usually do. I teared up while crossing the finish line. I did that only once before, when I ran my best time at this race three years ago after maxing out my training and realizing that I could do much more than I ever thought I could. Today I teared up knowing that Bill and both kids were at the finish. And Jim Marino was at the start making his usual announcements, just like always. But it also rained today, and it never rains on Broad Street days. And our kids don’t get cancer. Nothing is a given.
It felt like the Broad Street Run itself was supporting me this year.
On Wednesday, September 16, 2015 I quietly registered for The Boston Marathon from my room on 9 South at CHOP. I didn’t tell very many people. I told Bill. I told a couple friends. That was about it. No Facebook screenshots of my confirmation email. Not even the usual excitement of registration day for a goal race. I’ve never cared much about The Boston Marathon. But this year I decided to check it out for myself. The race was 7 months away at that point. This stuff with Shawn will surely be fixed and back to normal by then. It never crossed my mind otherwise.
Over the next couple months, I decided that I couldn’t run with people and post in online running forums without being open to talking about my goal race. My style is to talk obsessively about my own goals. So by November I began mentioning it if anyone asked. It wasn’t a secret. It was my goal race, and I was getting really excited about it. I studied the course profile and weather history. I read race reports. I asked questions of people who’d run it before. Plenty of people are willing and able to give me input and advice about running The Boston Marathon and I was grateful for their help.
The Boston Marathon means a lot of things to a lot of people. For some, they love to be a part of such a historic race, the oldest marathon in the world. For others, it’s symbolic of their personal running and racing achievements. It’s a prestigious and lucrative event to win if you make a living at running. It’s a party, a chance to reconnect with friends and hang out with other runners. Some people just want to get the jacket.
It’s none of those things to me. But once it became my goal race, I began to care about it. A lot.
As the months passed from September to October to November, Shawn’s illness showed no signs of easing up. I ran out of vacation days at work and was now on unpaid FMLA leave when I was with him at CHOP or outpatient appointments or on days when he was too sick to go to school and no one else could stay home with him. I clung to my running and my training because it’s what I love and also to hang onto at least one thing that was a major part of my life before this all started. I wasn’t running nearly as much as I did when I was obsessed with it to a level that made little sense for a competitive but mediocre runner, but it was still my thing and a big part of my identity.
In December the doctors and I made plans for Shawn to go to Boston Children’s Hospital for a second opinion (I love that phrase considering that we’d seen dozens of doctors by that point). The trip was scheduled for mid February. Among my planning and research about the department and the hospital and what we might learn there about Shawn’s sickness, I was excited to go to Boston. I haven’t been there since I was a kid. I could see the city, maybe even check out part of the race course. The trip was canceled a few weeks before the scheduled appointment. The “large atypical cells” had shown up in his cranial spinal fluid in January and we began moving toward oncology and away from immunology as the likely root cause. Although we still had no diagnosis, we no longer had a justifiable reason to see a neurologist who specializes in immunological disorders in a city over 300 miles away. We’d postpone that trip and revisit it if things changed back toward that direction again.
Throughout February, I kept training for my spring goal marathon, although far less than optimally. I let go of the idea that I could maybe run faster than my personal best time. But that course is not a fast one anyway. And weather in New England in the spring is very unpredictable. But weather is always a gamble and utterly unpredictable.
By March I had let go of the race all together. I could not justify taking an unpaid day off from work to go do my hobby and since this race is on a Monday, driving back immediately after the race would not even help me. Plus I couldn’t be in another state when Shawn’s illness was so unpredictable. We never knew from one day to the next how he would be feeling and if we’d need to go to the ER or get admitted. His illness was utterly unpredictable.
April 18, 2016. Race day. Mobility Impaired runners start at 8:50AM. Elite women at 9:32AM. Wave One and Elite Men at 10:00AM. Wave Three (my wave) at 10:50AM.
And a 9:30AM appointment in Radiation Oncology.
I felt sadness this morning but not the same sadness I usually feel when I have to miss a goal race. It wasn’t running or racing that I missed this morning. And it wasn’t the deep oppressive sorrow that I’ve felt at times along the way to Shawn’s diagnosis and beginning of treatment. The loss I felt today was for the life I had before this happened that is now irretrievably gone.
“What can I do to help?”
We’ve been dealing with Shawn’s illness for 7 months now and there have been a few distinct periods in which the question “What can I do to help?” was front and center. It’s also equally true that Bill’s illness has spanned three years now, and has recently taken a turn for the worse. Bill has traveled a similar path to Shawn. Not diagnosed. Can’t control the symptoms. Emotional, financial, and physical upheaval in our lives. And right now, he can do even less than he could before. Physical pain is now preventing him from doing practical things like childcare and chores. And doing his job, his career that is currently supposed to be our primary income source while my income has been slashed because I am Shawn’s primary caregiver.
So the question – “What can I do to help?” It’s a great question! We feel so grateful that so many people want to help us. But it can be a burdensome question, too. What can you do? I don’t know. Do something, that would be great. What? I don’t really know. We need a lot of help. Despite not wanting to need a lot of help, we actually do need a lot of help. We will need even more help moving forward. But it usually hurts my head to try to come up with an answer to that question. It also is hard to answer questions about what the kids like to do and play with. Surprise us! It’s hard to answer questions about what we like to eat. It varies by the day and we love cooking, most days, and consider ourselves hobby foodies. Sometimes, though, we hate it and don’t have time and one or more of us is too sick to do anything and we eat cheese and crackers for dinner, with a sliced kiwi because we need to have a fruit or vegetable at every meal and kiwi is a cool foodie fruit.
Yesterday I stumbled on a blog written by another cancer parent that addresses the “What can I do?” question in a way that spoke to me intensely. It’s the words I’ve been trying to find, but there are just too many words for me to have managed to do it myself. I’ve read it several times. There are three segments of it:
If you’ve asked me the “What Can I Do?” question or if you’ve been wanting to ask me this question, please read these posts. Read all of them. Read them twice.
I’ll add a few specifics for our family:
- Include Lilly when you send something to Shawn. It doesn’t have to be 50/50 but Lilly feels left out, hurt, and angry about this whole thing. She has the same fears that the rest of us do about where this might be going and what it’s going to be like along the way, but practically speaking, Christmas Morning can’t be only about one kid. It has to be about all the kids. The whole family. And yesterday our house looked like Christmas Morning, our living room covered with donated toys, games, gadgets, and stuffed animals. Falling snow outside and all, despite being mid April in Pennsylvania. I present the stuff in a way that makes it clear that it’s for our family but when some things are specifically labelled for Lilly, it helps. A lot.
- Gift Cards. Very early on in this process, one of my running groups gathered a hodgepodge of gifts for us. Cookies, greeting cards, games, money, gift cards. One of the gift cards was for Starbucks. We tend to use the money to pay bills, a really really necessary thing in our lives right now and something the gives us a great deal of stress relief, for at least one more week or month. We can’t use a Starbucks gift card to pay our bills. So we have no choice but to use it to buy treats from Starbucks. There happens to be a Starbucks across the street from CHOP. One day, when I was sick of eating the same food at the hospital (despite CHOP food being generally AWESOME!) I walked over to Starbucks and got a cup of coffee and a bacon, egg, and Gouda sandwich. Almost $7 for both. Way more money that I should spend for a sandwich and coffee when I could buy something cheaper at the cafeteria or eat cereal and crackers and apple slices (must have a fruit or vegetable at every meal) for free from the pantry on the inpatient floor. But really yummy. Shawn does not like cooked cheese on anything but pizza and mac and cheese but he asked to try a bite of my sandwich. My very “adult” swanky Starbucks sandwich. Not just melted cheese, but melted Gouda cheese. Very foodie. Or maybe passe foodie, because it came from a chain restaurant. But really yummy. He loved it. I buy it for him sometimes when we’re at CHOP. There were a few times last winter when his way of telling me that he needed to go back to CHOP was to ask for that sandwich from Starbucks. We never would have discovered this if my running friend had not given me that gift card. And I never would have asked for it following the question “What do you need?”
- Here are some local and national places we like and buy from, including some things that just keep me and Bill sane via food, drink, running, and cycling:
- Toni Roni’s Pizza
- Giant Grocery Stores
- PA Wine and Spirits
- Whole Foods
- The Great American Pub
- Valley Forge Running Company
- CHOP cafeteria meal vouchers
- Any large local gas station (Lukoil, Sunoco, Wawa)
- Here are some local and national places we like and buy from, including some things that just keep me and Bill sane via food, drink, running, and cycling:
- Household help. Bill’s illness has recently taken a turn for the worse in a way that makes lifting anything to shoulder level very difficult. This includes sponges and mops and vacuums to clean our house, mowing our lawn, and even lifting his bike up the stairs to go for a ride. With me being at CHOP more than 50% of the time, this means that our house doesn’t get cleaned much, our lawn won’t get mowed much, and Bill doesn’t get to ride his bike much. I don’t know what can be done for the bicycle riding, but we need help with cleaning our house and keeping up with our yard work. Bill has a really low tolerance for messy. Mine is slightly higher. The kids couldn’t care less. The title of this post, “Sometimes Our Lawn Just Gets Mowed” is from one of the things on a list in that other blog I mentioned above, and probably from the “anonymous” option. People probably just showed up and mowed their lawn sometimes. I read that to Bill and we just looked at each other and simultaneously said, “That would be great!” The house cleaning thing is a little trickier. We value our privacy. We would never be comfortable with our friends or family cleaning our bathroom or scrubbing our floors and certainly not folding our underwear. But we have no objection to a professional cleaning service doing so.
And finally, what to say. What to say is hard. I have heard some annoying and stupid stuff, too. But I don’t want to call anyone out on it or make them feel bad because I’m confident that everything that has ever been said to me about all of this has been with the intention of helping. I’m sure that I’ve said some really stupid stuff to other people in other situations. I’ll say just this – I am an atheist. I was raised an atheist, although brought to various churches to get the exposure to religion, to learn about its place in society and culture, and allowed to go to church services and summer camps with friends as a child to hang out with my friends and decide for myself what I wanted to believe. Ultimately I decided that atheism is the only thing that makes sense. My parents got that one very right. So as a lifelong atheist I will say this: One of the single most helpful things that anyone ever says to me so far is that they are praying for Shawn and our family. Because what that means to me is that they are thinking about him in a very meaningful way in their lives, and they hope that everything will be ok. And we all hope that.
Most of what I’ve posted here so far has been pretty intense, and focused on the pain and horrors of this process. There’s more to it than that.
I started writing this last Wednesday. I wrote that first line around 5PM after a neat day in apheresis with Shawn’s father and aunt. We were inpatient and had just gotten back upstairs to our room. Shawn said “today was fun!” with a big smile on his face. We watched new release movies (The Good Dinosaur and The Peanuts Movie) that I’m told were purchased by one of the nurses, out of her own pocket, so the kids who are tied to the machines there all day can watch the good movies.
We’ve had our diagnosis, which is now officially PNET (Primitive Neuroectodermal Tumor) since March 18th. Since that day, when I held it together throughout the afternoon and then sobbed on the bathroom floor of 9 South Room 5 for about two hours after Shawn fell asleep, Shawn’s mood and behavior has improved. He still has negative reactions to CHOP staff but he’s beginning to open up to the process. I think he is as relieved as the rest of us to have a diagnosis and a treatment plan, even if it isn’t a good diagnosis and treatment plan and it has a poor prognosis. Shawn knows all of this. And he seems to be hating the doctors and nurses less and less as we go on. We were at CHOP yesterday for his central port placement and he brought one of his stuffed animals, the polar bear. A doctor asked him the bear’s name. Usually he grunts at anyone who asks him that question, and don’t you dare touch them, it’s even in his chart to not to do so. The kid who has previously hit and screamed and threw equipment around the room with far less provocation than asking the name of a stuffed bear simply answered the question. Poley. That’s the bear’s name. It’s Poley. He hugged the bear.
Today was day one of radiation treatment. His anesthesiologist was a doctor who has been with us since the beginning. Multiple GA procecures since September. He knows Shawn. Shawn recognized him, too. Shawn asked for today’s procedure to be done in a particular way. A way that made little sense to the doctors, nurses, and me and his dad. But he wanted it that way because it was what he knows. The doctor asked him why he wanted it that way. Shawn reverted to the defiant angry kid who throws stuff around the room, hits people, calls them stupid, and shuts down. But in the middle of this, he listened to the doctor’s questions. He answered those questions. He told the doctor why he wanted it the way he did. The doctor left, came back a few minutes later, told Shawn that he appreciated that Shawn had told him why he felt the way he did and that he could accommodate Shawn’s request. Shawn has a say in what happens to him. And he was able to ask for what he wants with words. After he was asleep the doctor and I talked and agreed that this is huge progress.
The nurses then told us that they can help us find a place to eat lunch. Oh, we know our way around here. We may be new to you, but we are not new here.
Back to last Wednesday. Aunt Lori is always a lot of fun and that day was no exception. She’s the “Fun Aunt.” Lori also tends to find people she knows or who know people she knows. She had a business connection with one of the nurses. She shared a birthday with another one of the nurses. It was fun to combine CHOP with Lori. Lori will also be helping us with transporting Shawn for his daily radiation treatments for the next six weeks. Lori is a great resource for this, having undergone her own radiation treatments for her own cancer at the same place very recently. Shawn knows this, too. He knows he’s not alone in this. Others have gone before him and will help him.
After the apheresis was done, we went to audiology for a pre-treatment hearing screening. Hearing loss is a potential side effect of the radiation and they will monitor this regularly. Lori and I went back to Shawn’s room to drop some things off while Shawn’s dad went into the testing with him. The audiologist told us where to wait when we got back. The room was freaky. It was like a carnival fun house. I’m sure it was intended to be fun and frivolous but we were hilariously unnerved. And we laughed hard and loud about it, not realizing that we were right outside the exam room and were laughing so loud that we disrupted the testing. Looking back, it probably wasn’t nearly as funny as we thought it was at the time, but the laughter was good.
The next day Shawn had his CT Sim to map his brain and spine for the radiation treatments. While he was doing that, asleep, I went to my car to drop off some papers and bags in anticipation of being discharged that afternoon. That’s when I discovered that my car battery was dead. I’d left the dome light on when we parked on Monday and hadn’t been back since. I started to get upset; one more thing, dammit. But I quickly stopped that line of thought. CHOP will fix this for me. I have jumper cables, I just need another car. I’ll go to the security office and ask for help. They were there quickly and efficiently, and of course they had their own cables that plug directly into the front of the security vehicle. Within 20 minutes I was fully charged and back in the waiting room.
I have wonderful friends and family. Shawn goes to school in a fantastic district. We’ve received financial assistance from organizations like Fred’s Footsteps and one of my running friends has added Shawn to a charity 5K that her church sponsors each year (more in a later post about my thoughts about the connection between racing and charity, and being a racer and now a charity recipient, this part is not easy for me.) My coworkers have helped me tremendously, both at the office and with emotional and financial support. Friends of mine from high school have sent him gifts. My running friends have sent gifts and run with me at 4AM or 7PM or whatever time I could make it. More than one friend has snuck wine into the hospital for me and stuck around to drink it with me out of coffee cups in the family lounge. Bill and Lilly come visit whenever they can and keep in touch every day through Facetime. They also take care of everything at home while we are away, despite Bill being sick too. Shawn’s teachers, guidance counselor, and principal have stepped up and ensured that Shawn has access to everything he needs to be successful in school and also offered support for our family. Despite missing over 80 school days (about 2/3 of the year so far), Shawn is on grade level in all subjects. In the past week Shawn has had a breakthrough in his reading ability. He reads almost everything now. He walked around CHOP today reading all the signage. He credits his hospital teacher.
We’ve had an amazing team of doctors and nurses and social workers and housekeepers and cafeteria staff and parking attendants and teachers and security officers who have all heard me yell more than I probably should. I ran into a couple of them today, in the hallway, and we chatted. It was fun. I thanked them.
This post got derailed last Wednesday when the doctors came in to talk to me after writing that first line and I went back to frustrated and angry and no longer interested in talking about the fun and good things. There is more crap in my life right now than anyone should ever have to deal with. Today he started the radiation treatments. I can’t say that I’m not scared shitless about this process. I can’t even say anything positive about it other than that I hope it works. But today was a good day. I don’t know what tomorrow will be but today turned out ok.
This post won’t be as intense or dramatic as some of my others. I’m not as good at writing happy as I am at writing sad and angry. And I’m not at CHOP right now, and my best writing happens at CHOP. But I was there today. And I’ll be there tomorrow.
There’s a balance between hope and reality. My goal right now is to find it. Until then, we’ll watch some fish, play Wii games, and dream about getting our own aquarium. He came home today happy.
On January 12th, a Cranial Spinal Fluid lab result appeared in his chart that read “Rare large atypical cells, suspicious for a possible tumor.” Neuro-oncology was brought back in (they had removed themselves from his case several times previously.) His primary neurologist began the process of transitioning us to oncology. We still had no diagnosis but we knew where we were headed. We spent about 6 weeks in no-man’s land. Not in neurology, not in oncology. We had no home.
We are now fully in oncology and we are spending our first night here tonight. Floor 3. We arrived in Interventional Radiology at 7:30AM. From there we began the transition.
Excitement. We will meet other parents and kids with cancer. We’ll find our home. We’ll make friends. We’ll find resources.
Confusion. Why is the procedure taking hours longer than they said it would take?
Anger. Frustration. Our room faces the lobby, over a construction zone and only three floor up. With no natural light. The DVD player (actually a Play Station) won’t play the Star Wars movies that we brought from home, that friends had given us, the one thing that we were looking forward to. We can’t seem to order lunch because he hasn’t officially been admitted despite being IN our room and Shawn not having eaten anything for 18 hours. Each nurse has their own interpretation of the rules and how we can and cannot use the meal voucher. Fuck it, I’ll go to the cafeteria and buy him lunch with my credit card. Fuck you. Fuck CHOP.
Agony. The radiology attending and nurse practitioner came by to explain the radiation plan. Short term and long term side effects. Exhaustion. Cognitive disabilities. Hearing loss. Memory loss. Skin changes. Pain. Future cancers.
Shame. Why can’t I ever do this without getting angry? Without overreacting to stupid shit like the view from our room or a movie not playing, which they then fixed, like they always do? Why can’t I just deal with this? Why do I have to live this so publicly? The nurses and doctors are too understanding. They humor us. It’s condescending. It’s their jobs. It’s our lives.
More confusion. So what exactly IS his diagnosis? How will we know if the treatment is working? Answer: we won’t. How many other kids have you treated with this? Answer: two. What happened to them? The same two that the neuro-oncologist told me about when I asked her the same question. What happened to them? One now dead, one now a healthy teenager. How will we know what path we’re on? We won’t. We’ll monitor his symptoms. How will we know if he’s in remission? We won’t. He’s a kid. He’s not a number. We will watch him. We will see how he is doing. How he’s feeling. If he’s alive in 5 years then his 5 year survival rate is 100%.
Appalled. The nurses gave me an orientation tour of the 3rd floor. There’s snacks. There’s lunch every day. Child Life told me that if we couldn’t get our own Star Wars DVDs to play that they have several copies of all the movies. We’ve been at CHOP for almost 7 months. I’ve asked over and over if we can get any of the Star Wars movies. They answer has always been no. Child Life on the PICU and Neurology and General Pediatrics didn’t have them. The Family Resource Center Library didn’t have them. Oncology has them. Our neurology social worker told me that Oncology has all the resources and that we should use them. We’ve spent 6.5 months in this place, undiagnosed. We’ve seen kids and families in a range of departments in crisis. In pain. In tragedy. We’ve seen kids with tubes sticking out of them. In wheelchairs. Missing limbs. Criss-crossed sutures circumferencing their shaved skulls. Tubes coming out of every orifice in their body. Weighing nothing. Bloated from steroids. We’ve seen kids die. Oncology Child Life has several copies of all the Star Wars movies. There’s snacks. There’s lunch. There’s private recently renovated rooms. There’s money. Lots and lots of money. I talked with our nurse practitioner about the discrepancy. She told me that often donors earmark money for particular departments/conditions/diagnoses. So cancer gets the money. Lucky us.
Disorientation. On the east wing, I can hear vague echoing ghost-like crying of kids far away. I’ve heard this every time we’re on this side of the hospital, on any floor. It’s eerie. It’s haunting. It’s just a strange echo, probably because we are above the atrium.
After many hours of waiting and talking to a lot of doctors, nurses, social workers, three failed attempts to order lunch, and finally – done – nothing else to wait for, I went down to my car in the parking garage directly below our room. The one that only inpatient and Emergency Department families get to park in. The one I lied to get into this morning, by telling the guard that we were going to the ED and then explained to Shawn what “a little white lie” meant and why I considered it ok because we were going to be inpatient later that day but if we told them that we were going to IR, they’d tell us to park elsewhere. I gathered our clothes and snacks, the ones I hadn’t wanted to lug around with me all day, waiting to get to our room. I got back into the elevator. I could spot the oncology parents, just like I could before. The most haggard looking. The ones with the most baggage. And I pressed Floor 3 first.