I am NOT Strong!

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

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11 Responses to I am NOT Strong!

  1. Jen Phillips October 20, 2011 at 9:18 pm #

    I can’t even fathom what you are going through. Please know that I am praying for Jacob and you and all of your family. Wish I lived closer so I could help out somehow. Please know that you have a friend in me and I listen real well. Hugs and prayers!

  2. Stacey Philips October 21, 2011 at 6:50 am #

    I added you to facebook because we share the parallel universe of children with multiple LTFA, to see you go through the fight of your life both saddens and inspires me. It sounds strange for me to say you inspire me, but you do. You help me put life into perspective, to see you get through it makes me realize we all can get through it, whatever “it’ may be. You are strong, don’t ever forget it. God chooses the moms of children with special needs for a reason. Their strength, their unwavering courage and their ability to help their child through this. I think of you and your family often, I pray for you. Please know that it’s okay to vent and it’s okay to be sad, it’s even ok to fall apart once in a while. No one can understand what you are feeling right now but make sure you ask for help when you need it, I too wish I lived closer so I could be of more help.

    • Multiplefoodallergyhelp~Jenny October 21, 2011 at 2:27 pm #

      I really appreciate your kind words. Thank you so much! I love this~”God chooses the moms of children with special needs for a reason. Their strength, their unwavering courage and their ability to help their child through this.” It is a reminder for us all! Love to you and yours! ~jenny

  3. Erin October 21, 2011 at 8:51 am #

    I pray for Jacob, I pray for you and I pray for the rest of your family. Something like this is not fair to anyone. I hope writing the post gave you some comfort because I’m sure there are few things that can do that right now until Jacob gets through this. Kids like Jacob are given strong mothers like you who will fight for him every step of the way. I hope you have support too from your extended family or friends and are not scared to ask for help when you need it. Good luck.

  4. Hermionejh October 21, 2011 at 2:15 pm #

    I think it’s because of such powerlessness I feel that I want to project strength onto you, when maybe I should be offering strength, not that I even really know what that means, except that I care about you, and what’s happening in your life matters to me – not just because you’re in my family, but just as another human, another parent, another woman with challenges that I haven’t had to face – even though I’ve certainly had my own stuff.
    I know you’re just doing the best you can, and I apologize if I’ve added to the maddening pettiness. I’m grateful you wrote this post, and wish I had something to offer or say that would be helpful.

  5. Jo February 26, 2012 at 10:26 am #

    I feel the same way you do, and all I have 2 children with eosiniphilic esophagitis and a few other health issues, but no cancer. I cannot imagine putting that on top of what already feels like an impassable mountain of life, every day. Sending you infinite strength and a little bit of whatever the hell that magic dust is that keeps us from just locking ourselves in the closet every day and rocking back and forth. 🙂

    • Multiplefoodallergyhelp~Jenny February 26, 2012 at 1:56 pm #

      Thank you very much Jo!~ Both my boys are going in for GI scopes in April, to check my older son for EoE too, and to gauge how Jacobs is. I have a friend whose blog I want to share with you- her husband and both her sons have EoE. She has more experience in it then I do, as a matter of fact it was she who suggested I get Jacob tested due to his crazy allergy test results!~ http://livingtheallergylife.wordpress.com/ There are some days that are certainly harder then others!~ I can definitely relate to the days when you don’t want to face any of it. But we soldier on, because we must. Any bad day with their health issues beats the hell out of the alternative! I am just thankful that I am at a place in my life where I have the strength, patience, and know-how to handle all these issues. Best of Luck to you!!~ Jenny

  6. eosinophile May 24, 2012 at 11:27 pm #

    Wow, this brings me back to when my son was born 3 months premature, and he had an intestinal rupture and dysmorphic features, and we were told he probably had Beckwith Weideman syndrome (with a high risk of cancer WIlm’s being the most common), and all the other moms in the room next to me had their healthy babies and mine was in another ward with a ventilator and people were telling me I was strong. After one month I developed PTSD and started going to a counselor. My marriage almost didn’t make it thru the next year, but then my husband and I also went to counseling and things slowly started to improve. I guess you could call it getting used to it. I am still jealous of those with healthy kids. But relieved by interacting with other special needs families. Love your blog!

    • Multiplefoodallergyhelp~Jenny May 25, 2012 at 7:22 am #

      Thank you so much!~ I have actually checked out your blog as well! Fascinated with your Citizen Science project!~ Ok, fascinated and a little horrified! 🙂 We had to meet with a geneticist last fall to test Jacob for Beckwith Weideman- luckily he did not have it!~ Just the Hemihypertrophy, which has it’s own high risks for cancer, [liver, adrenal, and kidney]; and this places Jacob at a higher risk for having a recurrence of kidney cancer, or developing new cancers. It is a pleasure to make your acquaintance! ~ Jenny


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