My youngest son just turned 2 on September 3rd. On September 7th we got the phone call that confirmed he has cancer, a tumor on each kidney. Prior to him starting chemotherapy I wanted us to try to get a better handle on his food allergies and try to figure out what was going on. He was showing reactions to 31 things, between RAST tests and scratch tests! It was agreed that a GI scope made sense. So, on October 5th he had the GI scope done that confirmed he has Eosinophilic Esophagitis [EoE].
People keep telling me I am strong. I am not strong! I am simply doing the best I can under impossible circumstances. Most mothers would be doing the same thing, getting through it in much the same way~ day by day. Some have wondered why I am not a sobbing mess. It simply is not an option, I have kids to take care of, while my dear husband works two full-time jobs, all week-long, leaving home at 6:30 am, and getting back between 12-3 am. My boys look to me for how to act and react; and I don’t want to burden them with the fears I have. When I explained to my 5-year-old that his brother had cancer, the only thing he asked me was “Is Jacob going to die?” I told him “Everyone dies, but the doctors are really good at fixing this and are going to try their best to make Jacob better.” That I even had to have this conversation with my son breaks my heart. Tonight my son said to me “I wish you or Daddy or I had the cancer not Jacob, because we are tougher, we can handle it- just look at my muscles!” Oh my dear boy!
I am too familiar with the indiscriminate nature of cancer, having lost both my parents, a grandfather and a two aunts to it. Even my sister has had two separate cancers in the past ten years, and she is not even 40! I scarcely think there is a family out there that has not had cancer affect them in some way. My mother had breast cancer, that spread to her bones and liver. She died 12 years ago on December 18th 1999, at the age of 54. With all of Jacob’s other health issues, there is an increased risk from the Hemihypertrophy [genetic growth syndrome] for liver cancer, or a re-occurrence of the kidney cancer. Oh and let us not forget the risk of him having renal failure [again!], or God forbid, if he has to lose his kidneys~ because that just elevates us to a whole new level of crap. Even as I watch the chemotherapy drugs drip, drip, drip, into his body, KNOWING it is killing the cancer cells, part of my maternal instinct wants to rip that line from him- to protect him from the poison.
If I start to feel and allow myself to let those emotions go, it literally paralyzes me, I shake and can’t breathe- I feel like I have 50 lb bags of wet sand on my chest, I can barely draw a breathe- even with my inhaler- a full-blown anxiety attack. I react the same way when I think about my real fear~ a re-occurrence, or a metastatic tumor. I have faith we will get through this first round, but to subject him, [and all of us] to another round?~Unbearable.
I am fine- really. I march through each day doing what I must. Yes, I do forget some things [phone-calls that need to be made, plans, I repeat conversations], but I feed the dogs, feed the kids, sometimes I even feed myself, [and some days I don’t]. I try to keep my house clean, I do the laundry, I do the grocery shopping, even though most days I don’t even want to get up. I am exhausted, all the time, I have trouble getting to sleep, I have bizarre dreams, and wake up too many times, then get up by 6:30am regardless, to tackle the new day, still exhausted. I have a great book I am reading, which really means I carry it around from room to room, but can’t turn my brain off enough to focus on it. I have even hidden people I know on Facebook whose petty posts and selfish actions upset me so much that I was struggling to stop myself from verbally assaulting them. It felt like I was in the shark tank, while they stand on the shore complaining about their sunscreen! [As my momma said, “if you can’t say anything nice, don’t say anything at all!”]
Please, whatever you do, just don’t look me in the eye and ask me how I am. I can’t handle it. I randomly feel the urge to scream at the top of my lungs~”My sweet baby boy has Fucking Cancer! How the Fuck do you think I am?!” I get even more depressed realizing that when this fight is over, we will still be going for imaging [CT/MRI/Ultrasound?] and blood work EVERY 3 MONTHS until adolescence at least! ~[which is code for insurance deductibles every year, and fear and anxiety awaiting results every 3 months, for YEARS!!!] Oh, and we still get to deal with the multiple food allergies, treating the Eosinophilic Esophagitis, [and at some point addressing his Scoliosis]. I am mourning losing the illusion of a happy healthy kid, and I worry about what his future will be. I am NOT strong. I am simply doing the best I can.
You can follow our journey here: http://www.caringbridge.org/visit/jacobsprague