Well Coby just had his bath.... why is this monumental news? Because from now on his bath or shower will need to be scheduled. He will not be able to bathe within one hour before dosing or at least two hours after dosing.
Tomorrow begins our new normal.... I've been trying not to think about it (though I do now have an additional 14 questions I need answered) but as the hours tick closer how can I not?
For as far back as he can remember he was told (and still is) to read labels and to never ever ever eat anything with peanuts.... and now we are about to feed that very thing to him?
WHO DOES THAT? THAT'S INSANE!!!!!
What is going to happen to my baby tomorrow?
I am trying to talk myself down saying, 'some people's roads down OIT were smooth sailing, maybe Coby's will be....' but then inevitably I remember the stories of those who go into anaphylaxis during it.... Yet even those who went into anaphylaxis, many of them continued through treatment and graduated!
Is Coby going to have smooth sailing? Is he going to have just 'regular/bad' side effects? Will he have life threatening ones? How many of them? Some kids had none. Some had half a dozen. Some had to completely drop out.
I feel like in a sense I am ending Coby's 'normal' childhood in order to do this. Can he go in the car after dosing? Will my carpooling in the evenings get screwed up or can I switch dosing times? Can I really keep him somewhat still for the hour before and at least 2 hours afterwards since exercise/jumping about together with dosing can bring on anaphylaxis? Will I recognize the beginnings of a cold and know what to do (some say skip a dose, some say down dose). Will I recognize what is a 'normal' side effect and what requires an epipen and a call to 911? If I make the wrong call--- that's just a price too great to pay.
HOW THE HELL AM I GOING TO DO THIS?????
Tomorrow is 'day one' and this doctor's original goal for day one was to go up ONE THOUSAND TIMES FOLD (if there are no reactions) to as much as 5MG (about 1/50th of a peanut). Yet his allergist he has been going to all these years had told us something as small as 1/100th of a peanut can close his throat in seconds. This doctor agreed to stop at 3MG even if Coby hasn't had side effects to it (I had read that kids who stop by that dose tend to have an easier time in terms of gastrointestinal side effects at home). Though how possible is it that Coby would get to 3mg without reacting? And what will that reaction entail; just some discomfort that an oral dose of steroids can handle? Or are we going to end up in a hospital tomorrow? And how can I face this uncertainty EVERY. SINGLE. DAY. for the rest of forever.
Yet I need to do this in order to give him a normal life, don't I? This can be life saving. If Coby graduates this treatment, he'll be just like his friends- playdates, sleepovers, school bus rides, birthday parties, travel. This can literally open up the world to him. A world where one wrong bite will no longer have the power to kill him.
Yet no matter how I spin it beginning tomorrow I am literally going to watch my child eat the very thing that almost killed him???? HOW?????????????????????
And so I have to keep reminding myself that this can literally save the life of my child. (But why does it have to be so terrifying? 'Terrifying' is not strong enough a word.) "Courage isn't the absence of fear. It's feeling the fear but doing it anyway."
Over the last few weeks we talked to Coby all about it. How he will have to remain pretty still and playing for hours every day, how he will have to tell us if he feels any reactions coming- and what those reactions can feel like. We also told him what it would mean if he graduates this treatment and his eyes got as big as saucers at all that would open up to him at the end of this.
On Friday he came home from school saying, "I told my Morahs and my friends that I am not coming to school on Monday. When they asked me why, I told them I am going to begin my treatment to try to get cured from my food allergy!" (I know, I know, it's not a 'cure' and we had explained it to him, but this is as close as it may get.)
And as I am typing this Coby is sitting across the room playing on my phone and out of the blue he calls out, "'I CAN'T WAIT UNTIL MY TREATMENT STARTS!'
Despite what his little body is going to have to go through, he is excited. He sees that end goal; the endless possibilities of safety and goodness and freedom. Through the eyes of a child. Through the eyes of innocence.
...but what I would give to be able to switch places with him.
Inhale. Exhale.
while our paths are different - we have also succumbed our daughter to poisons (says that on the bottles) to cure her - and yes, she even went into anaphalaxis when we found out that she was allergic to one of the chemos - and yes, we had many hospital stays - but today she is off chemo, her hair has grown back and she is stable. but i always think about what effects this will have on her when she gets older, secondary cancers, etc. just breathe and as we say - day by day! deep in your heart you are doing what is best for coby (until it turns out not to be but hopefully that is not the case here) so breathe and relax and write and communicate and yell and scream and find other parents in the same situation and talk to them and have coffee with them.
ReplyDeleteRobyn you and your family are superstars- and that is an understatement! I am so glad she is doing okay now and IY"H will continue to do so in the future!
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