r/pediatriccancer • u/StageLyfe • 7d ago
Chemo Cycle Caregiver Fatigue
We’re wrapping up the second cycle, and scans are scheduled for after Labor Day.
We also have to have our baby’s Broviac port put back in. {He had MSSA during his first cycle, and it created a biofilm around the tubing} Luckily it didn’t move anywhere else in his body. The team put a PICC line in so we could stay on track. Baby had to complete a 14 day antibiotic before he the second Broviac could be placed.
The few last days I’ve felt worn down from it all.
We have support from neighbors dropping off food, which is a lifesaver. Our families live across the country, and will be coming sporadically over the next few months.
Is it helpful when our parents (baby’s grandparents) visit? I tell people yes, but for me it doesn’t feel helpful. Making space for their visits, and putting on a strong show (I know people will say… show them the hard parts so they know) but honestly people don’t want to talk about the fear and anxiety we experience during cancer treatment. What my husband and I really need is someone to be there in the middle of the night for the unexpected emesis or crying due to chemo.
We go on walks and out into the world on the good days, but lately I feel sadder after being out and about. Seeing how we are on a pause when other kids are growing, watching our baby grow mentally but his physical size has plateaued as we continue treatment. I feel robbed of our baby’s baby time, and longing for the day we ring the bell. In life we don’t get time back and even though these are hard times it’s still our time. God fuck cancer. I fucking hate it.
We are often asked if he has siblings? His only sibling is our 14 year old chihuahua. Will we have a second? Who knows? Because this is all so very exhausting that the thought of having newborn stage along with all that comes along with it seems like insanity. Our baby is one years old, with Hepatoblastoma and it really sucks. It just really sucks to be the parent of childhood cancer. I search the internet to find stories of Hepatoblastoma survivors, and it helps me find peace knowing we will be one of those stories in the future. However, the present feels like we are paddling upstream and the tide is rising.
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u/Tkd2001kk 7d ago
I am so sorry. Our daughter was diagnosed with Hepatoblastoma at 19 months in March 2023, had two cycles (each three weeks long) then scans, and another two cycles followed by scans. Then we had a lube resection in Stanford (that’s a crazy story), and once cleared, another two cycles of cleanup chemo.
She was often times sick 7 days after the start of the cycle (thanks dox/cys). It never failed…always on day 7. The fatigue is real…”How are things going?” Insert small elevator pitch summary here…
We were also lucky in that we had family local and at the time we were both working primarily from home. My wife would take her out during the day while kids were in school, but she rarely went out with others for fear of the hospital. Fast forward two years, she’ll celebrate two years in September of her last chemo.
All this to say-I know no two diagnoses are the same. There is a Facebook support group for Hepatoblastoma parents and families that was quite helpful for us during our daughter’s treatment. Also the fatigue is real…if my family wasn’t local and they wanted to come help, I’d have them stay somewhere else and gone them specific tasks that are helpful…
Also if you would like those Facebook groups or to chat, lmk…