Childhood Cancer Awareness

The Limbo of Maybe

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Last week L came to us and told us that he had a painful bump on his jaw. It was a hard, pea-sized bump on the right side of his face. My first thought was “It’s back. It’s back. He’s relapsed. We have to do it all again.” This is always my first thought when something happens with him. It will always be my first thought.

Maybe it’s nothing. It’s probably nothing. But given L’s history, we no longer have the luxury of nothing. We live in the maybes. Maybe it’s back. Maybe it’s a secondary cancer. And so, it must be checked out.

I called our pediatrician and requested an appointment. Our doctor was on vacation. Oof. Our back-up doctor was also on vacation. Double oof. If I wanted someone to see him that week, it would have to be with a new person. Great. I get to tell the whole story to a stranger and answer questions I have answered 1,000 times before. I get to explain, again, why it is so important that s/he examines him thoroughly, that s/he looks everywhere, for everything and if there are concerns they need to tell me. Now. If I wanted L to be seen that week, the new doc was my only option. I made the appointment.

Then, later that morning, in the back of my mind I remembered that our babysitter took the boys to their dentist appointments in July (best babysitter ever) and that L had a cavity that needed to be filled. It’s like in the cartoons when the word bubbles are floating around people’s heads. And he has a huge canker sore. On the same side as the pea-sized bump. I call the dentist. What side is that cavity on? (Poor dental health is just one of the side effects of all the chemo he got, but that’s minor compared to the alternatives, right?) And now my mind is in overdrive. Spinning with possibilities, holding on to the prayer that it’s not cancer, again. YES! The cavity is on the same side as the bump and the canker sore. So, odds are it’s just a swollen lymph node or an abscessed tooth. Wahoo! I’ll take it.

 

It's JUST an abscessed tooth!

It’s JUST an abscessed tooth!

We go to the dentist a few days later. Thank goodness for our dentist. I really like him. He is thorough and kind. He is also a parent and he knows L’s history, so he gives us a lot of latitude. He lasers the canker sore (very cool, didn’t know they could do that. And we got to wear sunglasses while he was cauterizing L’s gums) but he thinks the bump should be checked out. Our eyes meet over L’s bony body that barely fills the reclining dentist’s chair. His mouth is covered by his mask so I can’t see his lips moving. But my eyes are searching, pleading and he knows what I am really asking. “I think it’s nothing. Odds are it’s the lymph node doing it’s job. But, this is not my area of expertise and given his history, I think you should keep the doctor’s appointment and get it checked out.” My stomach drops to the floor. Given. his. history.

We go to the new pediatrician the next day. She is ah-mazing (thank goodness!). Not sure if the triage nurse who made the appointment told her about L’s history, but the Dr. had read his chart. I didn’t have to tell the story, again. She knew most of it. And, she was very, very thorough. “I think it’s nothing. It’s not hot, red, he doesn’t have a fever. If you want to do bloodwork we can, but I don’t think it’s necessary. If it gets bigger and/or doesn’t resolve in two weeks, come back.”

wwwwhhhhhheeeeewwwwww. How does the world not hear the air decompressing from the balloon that has filled my chest for 48 hours?

Scare over. It’s not cancer. It’s a lymph node. He’s fine. (Almost a week later now and the bump is almost gone.)

Maudlin? Dramatic? Over-the-top? Yes. Yes. And Yes. And, completely exhausting. But that doesn’t make it any less real.

This is our life. We live in the limbo of maybe. Equally ripe with potential and dread, freedom and fear, reality and worst-case scenario.

This spring I read Lily Koppel’s book The Astronaut Wives Club about the Mercury and Apollo astronauts and the Space Race. Buzz Aldrin was chosen to be part of the crew that would make the first moon landing. In speaking about the months leading up to the actual launch, his first wife Joan said, “It was normalcy tinged with hysteria.” Yes! This! This is what I feel like as parent to a childhood cancer survivor. It is vigilance and paranoia. On the outside, everything is fine. Normal. He survived. We survived. We are…unscathed. But just beneath the surface is maybe.

Some days are better than others. Some minutes are easier than others. Most of the time, the duration of my freakouts is short. But, other days, not so much. I know too much. In the week that I waited to post this, a fellow Rhabdo mother posted that her daughter relapsed. The cancer is everywhere. The odds are not in her favor. Some of my 46 Mommas friends have children who are still in treatment, while trying to go to school. They have missed the first day of school because of fevers and low counts. Others have orthotic leg braces ordered & ready to go, but cannot pay for them because insurance won’t cover it.

It’s never over. The maybe lingers.

As September approaches and the childhood cancer community asks for your support, I hope that you will be moved. Moved to do something. Paint your nails gold, make your facebook profile picture a gold ribbon, donate to a childhood cancer charity, make a meal for a family, pray for families who are grieving. We need you. Help us turn “maybes” into true “nothings.”

Thank you.

Gold Ribbon

September is Childhood Cancer Awareness Month

Making New Memories, Five Years After

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My #oneword2014 is risk. I took a huge personal risk by auditioning for the first-ever #MetroDetroit Listen to Your Mother show. I was hesitant to audition with a piece about childhood cancer. I was nervous that it was too serious, too sad. Our story is serious and sad. But it’s true and real. Our journey changed who I am and how I see myself as a mother. That is what LTYM is all about. Stories by, of, and about motherhood.

My risk paid off- I was accepted as a castmember and on May 4, 2014 I had the amazing honor and privilege of standing center stage and sharing my story. LTYM was one of the best experiences of my life. It helped me trust other women and other mothers. It helped me remember that there are good and kind people who will hold you when you need it. And, it gave me a boost of confidence as a writer.

Thank you to my amazing husband Sean for driving 85+ mph from MSU graduation to make it in time.

Thanks, Hubs!

Thanks, Hubs!

And thank you to my friends Heather and Kelley for cheering me on.

Thanks to my cheering section!

Thanks to my cheering section!

The official LTYM You-Tube videos will post later this summer. Eek! Until then, this is the full text of my piece. Thank you for reading.

Making New Memories, Five Years After

“On December 12, 2008, our three year old son Luke was diagnosed with stage four cancer and our lives changed forever.

Many of my memories of diagnosis day are crystal clear:

the emergency ultrasound and MRI,

the ugly green sweater I was wearing,

meeting the oncology fellow who would be with us throughout Luke’s 15 months of treatment.

While my husband Sean played in the waiting room with Luke,

I somehow managed to sign paperwork giving strangers permission to pump my son full of poison,

in the hopes that the chemo would kill the rapidly growing cells inside his little body.

I remember holding Sean’s hand as he drove us home in the dark

and we wept in the deafening silence.

December 12, 2013 marked five years since our son’s cancer diagnosis. Like every year, it was a hard day. I just could not pull myself out of being angry and bitter.

The gray skies and snow on the ground are triggers.

The winter air in Michigan always smells the same

empty and raw.

Sean and I called each other a few times during the day. Family sent text messages saying they were thinking of us and sending good wishes.

Later that same night, Luke and his classmates performed “Betsy Ross and the First American Flag.”

Eighty-four second graders had been rehearsing since the second week of school. There was singing, dancing, and historical lessons about Betsy’s bravery and courage. Apparently, it was quite a coup to make a new flag that represented the new world!

Every single second grader had a speaking part and when Luke came up to the microphone to talk about Betsy buying blue ribbon for her flag, I thought my heart was going to leap out of my chest.

I was bursting with pride.

Surely the mom next to me could hear my heart pounding and see my tears. I wonder if she was thinking, “Who is this woman? What an odd thing to be crying about! Betsy Ross isn’t really tear-worthy!”

As I was sitting there trying to film the square dancing and the Virginia reel, a different movie played in my mind. Snippets of the last five years kept flashing before me.

In the movies, photo montages are usually round and sepia.

Childhood cancer memories are jarring and unsettling.

I remember midnight trips to the ER, fevers, watching my baby lose his curly hair, MRIs and X-rays, bacterial infections, the list goes on and on and on.

I wanted everything to pause,

for the world to stop spinning for Just. One. Moment.

so that everyone in that smelly grade school gym could appreciate my skinny, angular boy and his fight against the odds.

I wanted to stand up and shout,

Stop!

Wait!

Do you see that boy in the middle?

That’s my son! My baby.

He is a CANCER survivor!

He is a cancer SURVIVOR!

You have no idea what he has been through! You have no idea how special this moment is!

As Luke’s mother, I know his beginning, his past, and our hopes for his future.

The audience could only see his present.

The farther out Luke gets from diagnosis and treatment, the less he remembers. I am learning that this is a good thing

and how it should be.

His eight year old mind and body have been through more than enough. If he copes by choosing what memories to keep, that is fine.

I will be his memory.

I will always have one eye on the past, remembering all he has endured and another eye on the future, hoping and praying that he continues to get good news.

Luke’s radiation oncologist once told me, “Your hopes and dreams for him aren’t gone. They’re just different.”

Truer words were never spoken.

December 12th will always, always be the day that our son was diagnosed with cancer.

But, it can also be one of the days that he moved on, that he sang and danced with his classmates,

just like an eight year old should.”

Zach Sobiech

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I have been kind of whine-y and wallow-y lately for many reasons, some of them legitimate. I struggle sometimes with what to write because I don’t want to complain or appear ungrateful. I have a great life. But, I have also experienced extreme trauma and the recovery from that continues. The PTSD of our son’s cancer diagnosis strikes at the oddest times and without warning. Recently, we had to rent a car to get to NJ for my niece’s first birthday. Our car, it turned out, needed a new wheel bearing. Thanks Michigan winters and subsequent potholes. Then, we had an inch of water in our basement from a busted part in our sump pump. These things are minor, of course. But annoying nonetheless. And, they make me tired. Not sleepy. Like newborn baby, bone-crushing tired.

PTSD.

We have already endured the hardest thing. Haven’t we earned a pass for the rest to be smooth sailing?

Yesterday, I had to take L to a dermatologist for a suspicious mole. It is near the site of his primary tumor and was radiated, so his oncology team and pediatrician wanted it looked at by an expert. I left work early, pulled L out of school early, and then arrived to the appointment early. And then proceeded to wait 90 minutes in the waiting room. Blerg. Blerg. Blerg. Now, this is nowhere near what we endured while L was in treatment, but it is still scary. What if the mole was something? What if they wanted to biopsy it? Lucky for us, our five minute conversation with the doctor revealed that the mole is just a mole. He was nice actually. He didn’t apologize for being an hour late to our appointment, but he was knowledgeable and thorough.

As we drove home from the appointment, I got more and more angry. We waited so long in that stupid waiting room. L and I missed C’s T-ball game because we got home so late. Instead of being relieved that we got good news, I was annoyed and amped up. Turns out, Sean was hit hard, too. He told me later that he kept checking his phone looking for updates from me. Waiting really is the hardest part.

PTSD.

L and I decided to take a walk. As we headed down our block, L slipped his bony little hand into mine and started swinging. No prompting or begging from me. Just a moment of pure childhood innocence. As we walked around our block, he kept commenting on all the trees in bloom and how good they smelled. Lilacs, flowering crabapples, dogwoods, honeysuckle. The sweet, sweet smells of spring (Finally, spring!) in Michigan. “Spring and summer are my favorite seasons, Mom.”

Earlier that day, I had seen a tweet from the Children’s Cancer Research Fund (@childrenscancer) in MN about Zach Sobiech, asking people to share their stories and memories of Zach and how he has touched our lives. Today, May 20, marks the one year anniversary of Zach’s death from osteosarcoma. Although I never met Zach in person, I feel as if I know him. My sister-in-law Annie was his youth minister in Stillwater, MN. She provided updates to us about Zach and his treatment and we prayed for him and his family from the moment he was diagnosed in 2009 until his death. I read his mom, Laura’s Caringbridge posts and like all of us, hoped for clear scans and no recurrence.

I am not sure if I consciously thought about Zach and Laura while I was taking a walk with my own son. But, I think that subconsciously I was thinking about them. The Holy Spirit tapped me on my shoulder, or more accurately hit me over the head with a hammer, and told me to pay attention to that moment with L. There will come a day when he won’t hold my hand, or willingly take a walk with me. I know this. And through grace, I was reminded of that and paid attention to the moment that was right in front of my eyes. In his Soul Pancake video, My Last Days, Zach talks about life being a bunch of beautiful moments strung together. He is very wise.

The truth is, our family did a very, very hard thing. But, we didn’t do the hardest thing. We didn’t bury our son. He is here with us. He survived. And because of that, I must choose. I must choose to enjoy these fleeting precious moments that I have with both of my children. I must choose to make something good come from something so awful. I owe it to L. I owe it to Sean. I owe it to C. I owe it to Zach. I owe it to Laura. I owe it to my 46 Momma sisters who have also lost their children. I owe it to myself.

“I want to be known as the kid who went down fighting and didn’t really lose.”- Zach

Zach, you made one hell of a fight and you didn’t lose. Your life is a shining example to all of us here who continue to live in faith, and work hard to raise desperately needed money and awareness for all kids with cancer. Thank you, Zach.