Month: April 2016

The Boston Marathon, Radiation Oncology – Same Same

~ Blue Wristband Parent ~ 1 Comment

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.

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The Proton Therapy Cyclotron at HUP

 

 

 

 

 

Sometimes Our Lawn Just Got Mowed

~ Blue Wristband Parent ~ Leave a comment

“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:

What Not To Say When There Is Nothing To Say

What To Say When There Is Nothing To Say

How You Can Help When There Is Nothing To Say

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 IMG_4472out, 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
      • Target
      • Giant Grocery Stores
      • Wegman’s
      • Starbucks
      • PA Wine and Spirits
      • Whole Foods
      • The Great American Pub
      • REI
      • Valley Forge Running Company
      • CHOP cafeteria meal vouchers
      • Wawa
      • Any large local gas station (Lukoil, Sunoco, Wawa)
  • 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.

The Positives

~ Blue Wristband Parent ~ 2 Comments

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.

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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.IMG_4458 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.IMG_4448