Look at that. How cute. Adler’s Valentine’s Day envelope with me, daddy and him. How sweet! All filled with goodies and cards from all his classmates. They had brownies and ice cream with sprinkles and played games and had a blast last Thursday at his class party. I was there. It was fun. And I am always happy to attend those things so I can see Adler with all his buddies and playing and being “normal”.
But then he doesn’t want to eat the brownie or the ice cream and that feeling sinks in my tummy because he didn’t eat but like 5 olives for breakfast and he hasn’t been eating his lunch at school and dinners are a few crackers in a bowl in his new spot for a snack since he associates the couch spot with puking and he doesn’t want to sit with us at the table while eat because of the smell. Ugh.
Chemo is awful. It has done good and bad to Adler. His tumors haven’t grown because of it but he has no appetite and you can’t imagine the food phases he went through during chemo. It was 15 months of hell on his body. He went from a steroid induced chubby 4 year old at 63 lbs. down to 30 at one point around Christmas of 2014 during treatment. He was put on an appetite stimulant during treatment as well to get him to eat. You could see all of his ribs and his spine poked out through his skin on his back. He looked sick. And he had no hair then too. So now you see him with a full head of hair, a normal weight, and stable and all is ok right? WRONG.
He has food fears from chemo. He has food anxiety from chemo. He is afraid to eat because he thinks he will throw up. He also thinks about chemo and how it made him feel so if he gets a tummy ache or has the flu like a “normal” kid he goes right down the rabbit hole to when he was on chemo. He gets nervous and scared. He refuses to eat. I beg him, plead with him and do everything gently as to not make the situation worse with food.
I spent hours researching foods and concoctions and smooties and ways of preparing food during treatment but I had to be careful when he was neutropenic as to not give him foods he couldn’t have. I would travel slowly up and down the isles at Super Target and Whole Foods on a Sunday after a half a Xanax and a hot cocoa from Starbucks staring at the food hoping I would and could find something he liked. Anything. I even went to the grocery store at 8 or 9 o’clock with requests from him and by the time I got home, he wouldn’t want it. I cried. He cried. It was one of the only times I have cried in public over his cancer. Well, twice in one trip. Once at each store. The lovely lady at Whole Foods astonishingly showing me the fattiest yogurt they had for him and chocolate milk all while the tears streamed down my face in sadness, anger and hope. Hope that something in that cart would hit his hot button and he’d finally want to eat. I burnt incense when I cooked too as to not aggravate his senses. Nag Champa right by him. Tricks of the trade to keep him from gagging and not wanting to eat.
I found random things like mini pepperonis. A certain brand of meatball that even sent us some for free because Super Target stopped carrying them and I was desperate. Smoothies worked when he could have berries and he liked chips and crackers but the brands would change. He loved eggs with bacon bits and cheese in them and pasta. He loved pasta. I would make waffles and freeze them because he only liked mine. Bananas sometimes and turkey sticks. We would only drink one kind of juice too so I would buy out the quantity they had and make sure I was stocked. Whatever it took, I did it. And I still do. 3 or 4 different types of protein bars and mac n cheese and chicken noodle soup. Whatever he fancied even if it was just a couple bites, I kept it handy. Pantry shelves always stocked and the fridge too. I would have people send me messages about foods that someone on chemo they knew liked and recipes too. I was relentless with the food.
Adler has always been a picky eater too. Hell, since the breast even. He would get fussy with one and not the other so we switched to formula after the consultant came to our house 3 times from the hospital. I wanted to breast feed him so bad, but it didn’t work. Then it was on to baby foods and he preferred the Earth’s Best organic baby food over the Gerber kind and we decided that we would feed him as organically as we could and NO FAST FOOD. And we kept it that way too. And we still have. No soda’s either. (Yea, it is totally ironic to us too that he got cancer, we know!!) And yea, when he did get sick, I gave him a real Oreo and a real Dorito and said “here, try these” and he loved them. It was in moderation of course. Same with hot dogs and bacon and other things that people swear he shouldn’t eat. But, when your child won’t eat or is on chemo, it’s whatever, whenever and that’s how it is. When that snack cart would come in from the Ronald McDonald House with lord knows what on it, I never said no because he wanted the Capri Sun and the Frito’s. And it was ok. We were at the hospital and he needed calories.
Now, I am trying to give him good nutrition and good calories and it seems to be just as difficult if not more. I thought this was supposed to be our “break” from treatment and everything would just be fine right?? WRONG, again. Now he won’t eat ANY of the things he used to. Eggs make him gag and meatballs too. The mac n cheese has to be Amy’s frozen organic not the microwave Annie’s bunny kind anymore. And the chicken noodle soup, gagged him too. And he actually threw up tuna sandwiches twice post chemo. So those are out and he loved those during treatment. His tastes have totally changed. And his senses are heightened by like 100%. He can’t even smell some foods with out gagging. We took him to a Chinese restaurant for daddy’s birthday and he gagged and almost puked as soon as the food got to the table. And I rushed him to the bathroom and the same at Whole Foods today on our quest for new delicious foods for him to try. I have reached out to his play therapist and the child life specialist from the hospital and formed a plan. Things are in play to help with all of these new food fears and his actual anxiety and sadness. It’s been a traumatic experience for him these last 2 years and in the midst of all of the pain and treatment and illness the battle with and around food was constant. Even on steroids prior to diagnosis I couldn’t keep him fed enough. The poor boy was always hungry and thirsty which is what cause his adrenal glands to shut down and now he has adrenal insufficiency from the over use of steroids. Its our life. Our daily life.
Who knew food would be something he would fear one day? It’s amazing to me what has transpired mentally with all 3 of us through this and with Adler especially. He’s the one who had to endure it all as we watched. I would comfort myself with cookies and milk at 10 o’clock at night or slam a bag or rice with some soy sauce sprinkled on it as my dinner when the pain was so bad I didn’t have time to sit and eat. Or, I just wouldn’t eat and I blew up. I mean I was heavy anyway but it packed on quick with lack of nutrition and poor diet and zero exercise because time was spent taking constant care of him. It still is to a point but I am trying to heal myself too. I am 10 months sober. I have lost 50lbs and I am trying to get my ass moving more. It isn’t easy so I am gentle on myself about it all, as I am with him. NONE of this has been easy and it remains to be difficult the days following treatment. New issues arose with other illnesses he has and those are a focus now that the others are controlled and stable…..for now. For now. One moment at a time and one taste change at a time. And I am still relentless and willing to do whatever it takes to help him eat and not be afraid. We have had some very serious and deep talks where he has shared things with me that were open, honest and special even if they made me teary and sad for him. I keep them with me in hopes that one day this will all be behind us or if it’s still with us that we handle it with grace and love and acceptance like we have tried to all along. And may it continue even when the sea gets choppy food seems to be the enemy. And this to shall sadly not pass we know all to well that one thing is merely replaced with another and the struggle as they say, is real. All too real for us.
So Happy Valentine’s Day even if there’s no chocolates.