This is long. It's Jesse's story but really one about me and Caroline and neuroblastoma and love.
I met Caroline when Isabelle was two and Emily was a newborn. I really don’t remember meeting her. Sleep deprivation causes fogginess and forgetfulness.
Caroline had a two year old daughter, Leah, and was pregnant and just about due with her second daughter, Kathryn. She says I mumbled something like, “Get ready…,” which sounds like something I’d say. I think my girls were in the double stroller and Emily was screaming. What newborn screams in a rolling stroller? Emily. Emily does.
Caroline and I became friends. Our girls were the same ages and she was easy to talk to. I marveled at how calm she was all the time. Like nothing fazed her. I got flustered and anxious just thinking about taking my two little girls to the grocery store but she seemed as though she was made for this motherhood thing. I was not. We would see each other at the park. Sometimes at the health food store. And often we’d pass each other running or walking. We both agreed that it was the only thing keeping us sane.
The Nashes moved to Connecticut for a bit. We didn’t stay in touch. And when they moved back to Chatham they had a newborn boy in tow named Jesse.
While they were away, Emily got cancer. And I think someone mentioned the Nashes and a baby, but most of those cancer days I could hear people talking but I didn’t listen. The crazy voices in my head were WAY too loud to hear anything. But one day I saw Caroline pushing this little guy. And he was adorable.
Then Emily finished treatment and I started to poke my head out of the protective barrier of my house and lower the shield that I had held up for a long time. I started to talk to people and hear what they were saying. And Caroline and I reconnected. They live near us so we divide and conquer rides for the girls who are very very busy. We talk on the soccer sidelines about when it’s ok to let our girls on social media and where we like to shop online. Mom stuff.
So along the two of us went. Caroline had another baby. Emily started to feel better. We drove our kids a lot. We marvelled at how long a middle school Christmas concert can last. And then two years ago Caroline found a lump on Jesse’s neck as she was getting him up from a nap. And a week later he was diagnosed with Stage II neuroblastoma. And all the people in the little town that we live in started to pop their heads up and rally. I, on the other hand, wanted to bury my head. And did. I pulled up my shield. I had full blown anxiety attacks that I hadn’t suffered with since Emily’s treatment and began to question everything about Emily and her treatment and my mothering.
My first thought was that Caroline was a better mother than me for “catching” Jesse’s cancer sooner. She was paying attention. I was not. Then I got a little jealous. Stage II? No kid is diagnosed with Stage II NB. Then I got annoyed. Will everyone please stop asking me about the NASHES because it’s causing me to relive a horror that I was starting to make peace with. No not peace. That’s a lie. Just process better. Or block out or bury. Not sure. The whole thing is still a work in process. And then I had down right crazy mother-of-a-cancer-patient thoughts, He’ll get a little chemo and be fine.
Because when you’re a mother of a kid who has or had cancer it’s constant mind games. Constant. You feel a certain way. You acknowledge it. You feel bad for having that thought. You remind yourself you’re only human. And then you think Good god you’re an adult. Pull yourself together. It’s not about you.
So while my thoughts were having a field day, Caroline reached out. And I kept her at a distance. I needed to protect myself from possible conversations that I couldn’t handle. I would answer questions with texts. I was supportive but I didn’t want to have too much of a conversation because I was jealous and angry, two awful emotions. I was angry that Emily had to endure so much. I was angry that she had all of these issues from treatment and that Jesse would be fine after a few rounds of chemo. I was upset that everyone didn’t understand the messed up world of pediatric cancer and said stupid things. And then I’d feel reallllly guilty that I had those thoughts. Because people were trying to be supportive and understand what was going on and and who better to ask? Ugh! The voices in my head argued and my heart was sank. Mind games. I wanted to be a better person. To rise and be the best supporter of all. Be Caroline’s champion. But I wasn’t. I was weak. I was angry. I was sad. And I was resentful. Resentment is ugly and lonely.
Jesse finished his treatment. And everyone was happy. I was too. But truth? I was dying a little inside because I wanted my Emily to have had “just” a few rounds of chemo and be ok. If I were better at this mothering thing maybe I would have caught NB sooner before it ravaged her body.
And life resumed.
And then life stopped. Jesse’s neuroblastoma came back. And because it was “only” Stage II to begin with, Jesse’s Jimmy Fund team debated what to do. Jesse went through two more rounds of chemo to see if that would get rid of the NB. But it didn’t, so a decision was made to diagnose it as Stage IV high risk NB, and the protocol of care would be similar to Emily’s, but instead of two transplants he would have one (Emily was part of a trial and was randomized for two). Radiation and antibody therapy would be the same.
So you’d think that this is where I jump in and start to be the best coach in the corner of the ring. But I didn’t. I waited. And watched. And cried. And panicked. And Shane said to me, “Aim, there’s really nothing you can do.” But there’s ALWAYS something you can do. I swore when Emily was in treatment that I wouldn’t go back to being the person who really wanted to do something, but didn’t know what to do, so I did nothing.
So, on the side of a soccer field, without thinking about it, I just did what very few people could do for Caroline. I listened. I agreed. And I gently added a few pointers. And you know what? It felt really good. Because I think she needed someone to talk to who understood. She could talk and talk to other moms, other people, about what was going on, but who else could tell her how to survive endless hospital stays? Me. I could. I had this “thing” that no one else could give her. So I did.
You see, the Universe is really genius. It gives you what you need...not what you think you need. I did NOT think I needed to relive what happened to Emily. I didn’t think I could offer support to someone who was another version of myself in a dark time. I did not think that I could be brave enough for me AND for Caroline at the SAME time. BUT I couldn’t do nothing. That wasn’t ok. I had to be brave not knowing that at any point she could say something that could trigger junk that I didn’t want to revisit.
Ummmm. Amy? It’s the Universe. You need to do this. And so I did.
How many moms get to exchange a single text about who can pick up from soccer and that the VNA can be annoying? Or that scheduling scans is an art form and, oh, by the way, I hope the soccer trip to Nantucket is cancelled. We talked about siblings and sadness. Therapists and exhaustion. Acupuncture or antidepressants. And reminders that she was amazing. And yes, yes, she could do this. I couldn’t fix anything but I could make her oatmeal raisin cookies and drop them on her steps and tell her kids that the cookies were their mother’s and she might or might not share;-) (She always shares...I don’t think I would.)
By no means was I her right-hand-woman. I just knew what to say. I listened. I justified the horrible thoughts. The anger. And I felt good when Caroline would say something awful because then I was an ok person for thinking or saying something awful too. Because, truth be told, Caroline is a lot nicer than me. Mind games Caroline. Being the mother of a kid who has or had cancer is one...big...mind game.
And then Jesse finished treatment. Yay! And he had some newer drugs so his hair and hearing were going to be better than Emily’s. And that was ok because that was Jesse’s experience. And I had Emily refusing to do her homework without drama or eat anything that wasn’t white as a reminder of how LUCKY I AM!
Jesse did his scans right around Christmas because you always do scans after treatment just to make sure they got everything. And Caroline felt sick the night before. We all do. And we hold our breath and try to act like everything is ok as we roll into nuclear medicine. And I texted her the day before. “I’m thinking of you.” Cause that’s all you need from someone. Just to know they’re thinking of you. But then Caroline got awful news. It was back. And it was a relapse. A real “we don’t have a protocol for this” relapse. And my heart sank. And Caroline is the bravest woman I know because this is what she and Jesse did next. They marched forward. Jesse’s body worn torn from fighting. Caroline weak with not much more to give. Yet they marched. Cancer’s not fair.
At first they gave Jesse a little chemo cocktail that had worked on some NB kids who had relapsed. On Jesse it didn’t do anything. So then he went through a therapy that Caroline couldn’t be in the room for most of the time during the 5 days he had it. He’s literally radioactive. And this showed that the cancer didn’t grow anymore or disappear anymore. And Caroline was pleased with this. Stable. (On a side note, I couldn’t believe she was pleased that nothing had happened. It’s indicative of just how fast Jesse’s cancer was spreading at the time and that the sign of it not spreading was good news.) So they did the therapy again. You can only do it twice because it depletes basically all of your bone marrow. And the second time the NB was reduced by 40%, which is great! But that was it for that therapy and they needed to try something else. It’s in Jesse’s jaw and he feels pain there. The mass became so large at one point that Caroline could see it. So now he’s on a trial and goes to the Jimmy Fund every Thursday for a cocktail of god only knows what. No one can tell Caroline how it plays out from here. They don’t know. They tell her that his chances of survival are 5%. That they know.
They’ve been at this for 30 months. Two years and two months as of August 28th. Not just a day or two here and there. Every. Single. Day. Neuroblastoma doesn’t care about birthdays and holidays. There are no days off. Ever. Because if it’s not a day in the hospital, it’s a day giving meds and shots. Waiting for the VNA. Waiting for a phone call for lab results. Flushing tubes. Driving to Boston--sometimes to wait for hours in the Jimmy Fund. Sometimes for a quick check in that lasts less than a half an hour. Both scenarios stink and you get annoyed at either.
So yesterday I stopped by to bring Caroline something and we talked in the warm sun. We talked about how you appreciate a beautiful summer day after spending lots of them in the hospital. We talked about kids. And cancer. And mind games. Lots and lots of minds games. And I listened to Caroline say things that were honest. Things she can’t say to other people. And we gave each other a warm loving hug at the end of our conversation. And I feel so blessed that she trusts me. And that I am friends with someone who, you guys, is amazing. Really amazing. And brave. And selfless. And my shero (S-HERO).
So, although Emily is doing well, not every kid with NB does well. It’s easy for us to forget the dark days because Emily is doing well. She is lucky. NB is a game of odds. We walk for Jesse. And for Caroline. And for a better treatment for kids with NB. Because we can. And because the Universe gives us little reminders that we are much bigger and more powerful than we think. Send your strength to Jesse. Send your strength to Caroline. And give a big warm hug to someone you love.
“The best way to get rid of the pain is to feel the pain. And when you feel the pain and go beyond it, you’ll see there’s a very intense love that is wanting to awaken itself.” Deepak Chopra.