Tomorrow, Friday, May 27, will mark seven years since Marjorie was diagnosed with cancer. That is as crazy of a sentence to read as it is for me to write. It feels like yesterday and a lifetime rolled into one. Each year our oncology appointment brings up a unique set of worries and feelings.
The grief and sadness always remain. Some years the anger and ‘Why’s’ outweigh the grief and some years the massive fear of recurrence numb out every other emotion.
This year was straight up worry and anger. My constant worry over Marjorie’s PTSD and anxiety about needles blocked out any “What Ifs”. Her test results took a back seat this year.
After battling pneumonia the past two weeks, and going to multiple appointments and x-rays, Marjorie was DONE with the white coats. And I could not blame her. As you all know, Marjorie is one of a kind. Most kids only take medicine via a liquid form. Not my girl. She will come at you like a spider monkey if you offer advil in a cup to drink. She wants the pill.
Sadly, her pneumonia remedy entailed a strong antibiotic that only came in – you guessed it – liquid form. I begged the doctor for a pill and she laughed saying that has never happened. Marjorie simply is nowhere near the weight standard for pills. Sigh. Here we go – ten days of tears, shaking, anger and lots of bribes.
Because of our daily liquid antibiotic anxiety I did not want to add the stress of our upcoming oncology appointment. She finished her antibiotic Thursday and we celebrated! AND I knew I would have to tell her that afternoon about what was happening the next day.
After we dropped Manning at tennis, I told her we were going to Target to buy a new ‘I am brave/We can do hard things’ outfit for her appointment the next day. Then came the dreaded question:
“Will there be a shot?”
“Yes, baby girl, there will be a shot. I am so sorry. This stinks and I don’t like it either.”
All the worry and fear flooded into her tiny body. I did what any mom would do…drove straight to Target. Marjorie’s extraordinary play therapist gave me the idea to have her pick a special outfit for the appointment.
Marjorie’s anxiety results from being helpless throughout her countless hospital stays, being poked and prodded without a say so. Doing things like having her pick an outfit, choosing where we go to lunch after and other things help give her some semblance of control.
Sadly, this year it hasn’t just been oncology appointments that cause the anxiety, but any ‘unknown’. We are working through it and I am so proud of her and beyond grateful for our Healing Playroom.
Now let’s fast forward to the good part. We heard some really amazing and unexpected news at our appointment.
We are now with the ‘survivorship’ doctor. Because we are over five years out from treatment and cancer free, we now see Dr. Bechtel at Nemour’s Childrens Hospital. As Dr. Bechtel introduced herself and told me that she was a resident in 2015 and remembered Marjorie from the PICU.
We talked through current concerns and the future of Marjorie’s treatment journey. Essentially, they will follow Marjorie until she is 21. She discussed the list of side effects that can still happen as a result of Marjorie’s chemotherapy – heart, kidneys, bladder, learning disabilities…the list goes on.
And then she said something I was not expecting:
“With Marjorie being seven years out of treatment, the chance of neuroblastoma returning is nearing ZERO PERCENT. Her risk of leukemia is also getting smaller by the year and by year ten will also be close to zero.”
I always knew Marjorie had a good prognosis and she has been cancer free for years, but cancer is always in the back of my head. The worst case scenario is always lurking. Now this doctor is telling me that scientifically it is no longer there. My head took in the words, but my heart could not.
Cancer has programmed me to go to the worst case scenario. Marjorie’s countless hospital stays keep me always ready to fly into action – NICU, cancer, pneumonia. Name a hospital floor – I know right where it is.
Every time Manning or Marjorie gets a headache I think it is a brain tumor. Every fever is leukemia and every bump is a relapse of neuroblastoma. Any other cancer mom out there will nod along as she reads this. Cancer does that to you – forever warps the long shot “what ifs’ into reality. It is because we have been in that reality. Whether it be a few months or drawn out for years, time is irrelevant because it stands still.
Now on the seven year anniversary of Marjorie’s cancer diagnosis, I am trying to finally let go – to release the worry, unbearable fear and anxiety of living from what if to what I know to be true. I have and will always believe in science. Science is now telling me it is done. Marjorie’s journey with neuroblastoma is over. It is a joyfully terrifying sentence to write.
And while I fearfully relish in our good news, I am heartbroken knowing cancer has returned for two of our fellow Wolfson Warriors. Please keep Ava and Lucy in your prayers, sending them all the light and love you sent our Marjorie.
Seven years. Seven years of the deepest heartbreak and the greatest celebrations. Seven years of scans, needles and ‘what ifs’. Marjorie is a healthy and SASSY seven year old. Her big brother, Manning, our unsung hero, is our tech/coding wizard and growing like a weed.
My kids are just that – kids. We are tackling normal obstacles and growing pains. My work is to be just a mom – not a cancer mom or a ‘what’s next’ mom. Just a mom. Now it is time for me to find my footing again. Maybe I will find my way back to writing again. For the first time in seven years, I feel like I can breathe. It’s terrifying and exciting.
Saturday is Marjorie’s dance recital. A perfect bookend to our journey through cancer. I remember holding Marjorie in my arms as chemotherapy dripped into her small body. I visualized watching her dance on stage one day – healthy and happy. And now that day has come.
Thank you for loving us and praying for my sassy girl all these years. We are forever grateful and will forever pay and pray it forward.
The world is hard right now. Even with this unexpected news, my heart is heavy. I hope our story brings you some hope tonight.
Terri HobgoodMay 26, 2022 at 9:28 pm
Thank you for sharing your story; it’s ups and downs and good news and bad. You are all a wonderful family and I’m so elated with your news! May God continue to bless all of you and will continue my prayers for you! 💙❤️💙💖
Mary McCarthyMay 27, 2022 at 11:50 am
I am so happy for you. i remember hearing those same words….”we are far enough out that the rhabdomyosarcoma will not come back”….I still worry about the leukemia and other ugly side effects that might rear their ugly head but those words, and the words you heard are some of the best words I have ever heard. My heart sings joy for you.
Brynna S.May 27, 2022 at 12:56 pm
As I wrote to you last Saturday I am so inspired by the way you face Marjorie’s fears. Not with dismissal or “you don’t need to be afraid’s” but instead with gentleness and figuring out ways to support her in doing hard things. I face many fears, in fact today I have my mammogram (I’m high risk for breast cancer and have had two biopsies already) and along with that comes the fear of the results. But, I am reminding myself that it’s ok to be afraid, to pump up the self care today and remind myself that “I can do hard things”.
Thank you for sharing this amazing news! I am so proud of both of you!!