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Phillip’s Story

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

Were you aware of the childhood cancer world prior to your child’s diagnosis? Did you have any connection prior?
Yes, my friends daughter battled leukemia before my son was diagnosed

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?
In December 2018 my kids came home from winter break with colds. My daughter ended up with pneumonia and I figured Phillip was also dealing with pneumonia until the urgent care doctor told me to take him for a CT scan. The radiologist saw something on his chest X-ray and wanted us to follow up. His symptoms were cough, fever, and occasional night sweats which I assumed was his fever breaking. After the CT scan, the doctor told me to go home and they would call me with results… I refused and said I want to know now what is going on with my son.

The doctor left and paged a doctor and 20 minutes later came into our room and said “the oncologist wants to admit Phillip for further testing.” I knew then he had cancer. I just didn’t know what kind.

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?
Phillip was put into a clinical trial. Phillip received Brentuximab, doxorubicin, vincristine, etoposide, antibiotics and tons of prednisone. On his third inpatient round of chemo he had an anaphylactic reaction to etoposide and was switched to etopophas.

It was the scariest thing I ever saw.

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?
There were so many obstacles we faced.

At first, my husband and I were at the hospital all the time.

Once we knew what type of cancer Phillip had my husband seemed to pull away, he was very emotional seeing our son go through all of this and he stopped coming to see Phillip as often while inpatient.

I felt totally alone. I felt like I was left to tackle this without him. My daughter was also affected we put her on an independent study for 6 weeks of her 6th grade year. She was bounced around to two of our family members houses because of the time spent in the hospital consumed us. Phillip’s first hospitalization was 23 days.

Every round of chemo we knew Phillip’s immune system was more fragile so when we were home we did not go anywhere, this journey isolated us from people we love because we didn’t want to risk him becoming ill.

Watching my son go through all of this changed my perspective a lot, I cherish everyday with my kids, I take more pictures, I stopped worrying about saving money and now feel like we need to enjoy ourselves.

I feel like I don’t want to miss anything with my kid’s, so I don’t work as much as I did before we struggle a lot financially but I can’t imagine spending less time with them. Anytime Phillip gets a cold symptoms I start to panic. I developed PTSD and horrible anxiety.

What point is your journey at now? What survivorship issues are you facing? How do you handle the unknowns?
Phillip is celebrating two years of remission currently. Post chemo Phillip has suffered from severe neuropathy, he’s always having pain in his extremities. Phillip also complains of his “heart” hurting.

Every decision we made is not without a possibility of something bad happening down the line.

I don’t handle the unknowns well. I often wonder did I make the right decisions, what if we didn’t do the radiation would he be having these symptoms? I’m constantly in fight or fight mode. I don’t know how to stop these feelings. I do speak to a therapist and have since his treatment started, I feel like that has helped me cope.

Read more stories about kids with cancer, this ICCD.

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