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Joel’s Story

Every month, ACCO shares stories about children diagnosed with cancer from the parent’s perspective. Today, read about Joel’s journey through osteosarcoma.

Were you aware of the childhood cancer world prior to your child’s diagnosis? Did you have any connection prior?
Prior to our son having cancer, I followed two college friends’ stories as both of their sons were fighting leukemia.  It was helpful to know some of the terms and lingo and have a small idea of chemotherapy protocols.

Tell us about the day your child was diagnosed. What events/issues led to your child’s diagnosis? How did you feel/react to the initial news?
My son had complained of leg pains and we were trying to determine the cause. Growing pains? It was during his basketball season so we thought maybe a muscle strain.  He tripped and was in great pain and his leg swelled up. We knew it was time for x-rays to see what was going on.  The doctor saw a tumor in his femur and we had an appointment at Duke 3 days later.  After more tests, imaging, and a biopsy, it was confirmed to be osteosarcoma.

Did your child follow a COG protocol for treatment or did they follow a different protocol tailored to their situation?  Thoughts on their overall treatment experience? How did you feel watching your child go through treatment?
Chemotherapy was hard to see our son endure.  He fell after his first treatment resulting in a painful femur fracture- making his journey more difficult.   In true warrior fashion, he held tight to his faith in God and leaned on Him for strength during the tough times of chemo.

Share with us obstacles and triumphs that you faced personally during your child’s cancer journey. How did it feel to be thrown into the childhood cancer arena?  We hear so many talk about joys and sorrows, triumphs and obstacles they faced throughout their journey – please share any of yours or your child’s.  Overall – how did your child’s journey shape yours and your families new normal?
Joining the cancer club was something we never even thought of- no parent does!  Your life goes from routine and schedules with family time, meal planning and grocery shopping… to doctor appointments, lab checks, watching for fevers, keeping the puke bucket handy, and praying that your kid doesn’t catch the common cold now that his immune system is near zero!   Our son’s journey didn’t follow the usual script they told us about at diagnosis.

He faced many challenges; an angulated fracture from a fall, that was above the tumor.  This led to weeks of immobility in bed with a pain pump resulting in a blood clot under the tumor area.

After the limb salvage surgery, his recovery had several complications to fight through.  Our family was separated because of cancer and then because of COVID.  Our girls were never allowed in the hospital and for several months only one parent was allowed in at a time.

Movies depict scenes of family visiting, playrooms, art, and pet therapy. That was not the case for us!

Recovery after chemotherapy ended was another transition to journey through together.   Our family was surrounded by friends near and far, uplifting our son in prayer.  Our faith carried us through the darkness times we faced in the battle against osteosarcoma.  After treatment, we are healing both physically and mentally, adjusting to life after cancer and chemo.  We have been able to share our story and encourage others in the club.

What point is your journey at now?  What survivorship issues are you facing?  How do you handle the unknowns?
Currently, our son is 6 months NED!!!!   His leg has not healed and he has limited weight bearing on that leg.  He will face another surgery soon to help the healing process.  We don’t know what his future will look like, but hold onto to our faith in God to get us through post treatment just as He did during treatment.

Update: January 2024 – Joel had surgery on his left leg (non cancer leg) to stop the growth plates. The right leg is growing at a slower rate so when it’s time to do the limb lengthening process (18-24 months) the limb difference won’t be as much.

Read more stories about kids with cancer, this ICCD.

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