Last year, we were new to this world.  A world where kids have cancer.  A world where life is brutal, unkind, and unfair to children.  A world where kids must grow up super-fast.  A world where kids endure pain, and there is nothing a mother can do to help.  A world you have no control over.  This is a world where you sit back and hope for the best.  Chemo, appointments, and scans are scheduled, and you figure it out and show up.  There is no more planning around your schedule.  Our new world involves planning around treatments.  Our new world involves not really planning at all because you never know when your child will feel sick or spike a fever.  Our new world involved making sure we wore masks everywhere and making sure to stay away from sick people.  It meant reiterating to friends and family multiple times that a runny nose or cough, an “I think I have allergies” is too risky.

Everything your child goes through during this time is very scary.  Every new symptom is very scary.  You will watch their every movement looking for a change, a difference, trying to make sure nothing is wrong.  In this world everything is unknown and uncertain.  How will your child tolerate chemo, meds, and blood products?  Will they have a reaction?  How will my child handle scans, tests, and pokes? Port accessing and de-accessing, lumbar punctures, PET scans, MRIs, x-rays, CT scans, ultrasounds, PICC lines, NG tubes, IVs. If a machine beeps while you are in clinic or the hospital or if your child coughs, sneezes, pretty much breathes differently, your heart stops briefly. Emily was diagnosed with Non-Hodgkin’s Lymphoma in May 2022 and then relapsed in October, and we’ve experienced all of this and more. Emily needed a stem cell transplant after her relapse.  Guess what? More unknowns.  Apheresis to collect her stem cells, more chemo at a higher dose, a chance of reaction to the drugs they use to keep the stem cells from sticking together.

Then there was radiation.  This one was the scariest as there is not great research on full brain radiation on children.  They could give me the best and worst-case scenarios, but statistical numbers were not there.  At first, I was questioning whether she should get it.  If the high dose chemo killed everything during stem cell transplant, why does she need it? But if she didn’t get it, would the cancer come back? And if she did get it, would it cause cognitive issues?  More unknowns. 

It is also a very lonely time as a mom.  Worrying about your child getting sick or hurt is one thing.  Worrying that your child could die is a whole new level.  Friends and family can sympathize with you, but the only people who truly understand you are other moms in your new world.  They understand the fear, the anger, the anxiety, the sadness, the numbness, the loneliness. It is also a lonely time for a child as well. They now have become part of a special group of kids.  They can no longer attend school, school events, clubs, or sports.  Emily has missed dance competitions and recitals, choir competitions and recitals, soccer games, sleepovers, Christmas parties, etc.  Think of all the things your kid has done in the last year.  These kids miss all of that because they are stuck in the hospital.  On a positive note, Emily has made many friends at the hospital.  She has made friends with other children that have “lived” down the hall from her in the hospital. Doctors and Nurses also became friends, too.

Emily finished her radiation on June 22.  Since then, we are trying to get back to life pre-diagnosis.  She still has doctors’ appointments.  She is still working on regaining her strength.  There are still a ton of things she can’t do because of her port and the stem cell transplant, but we are once again looking forward to ringing the bell, hopefully at the end of summer.

This last year was hard.  People say, “I don’t know how you do it.”  Honestly, I don’t know how most days.  When it comes to your child you just keep moving forward no matter what.  I know I need to be strong for my child.  If I show fear, she will immediately be scared as well, and she is already dealing with so much. So I try to be as tough as I can. Most days, I was hanging on by a thread.  Since treatment has ended, it has gotten a little better. But there are some days that are still just really hard.  The fear is always there.  You start to live life again, but you think of the others you have met along the way.  You now know how valuable life is.  You thought you knew it before, but you really had no idea.

PCFLV has been there for our family from the beginning.  They are so special because they recognize that cancer is a family journey.  It affects everyone in your family…just differently.  They always include parents and siblings in their events, which is so important.  Family time is everything on this journey, especially when one child is living at the hospital and the others are living at home.  They also provided crafts for Emily to keep her busy and gifts to cheer her up when she was not feeling good.  They hang out with the kids in clinic to help occupy them.  The most meaningful was when they were headed to the hospital and reached out to see if they could grab something for Emily to eat.  They take the time to truly connect with the kids and families.

Written by her mom, Adele

Please consider helping children with cancer and others in our community by scheduling a blood donation at Miller-Keystone Blood Center: https://donor.giveapint.org/donor/schedules/zip