So this really happened. Fiona ate her lunch at Daycare/Summer Camp (aka. the place I drop her off so I can go and do my day job and earn enough money to pay for the place that I drop her off too...) This? This is a big fucking deal. These are the types of things I never in a million years thought would be a big deal, and yet - here we are. I have told every person I have encountered in the last 2 days since it happened. This is late breaking news. This is 'We now interrupt your regularly scheduled programming…" kind of news. Hell, I'm writing a blog about it. This matters. It matters a lot.

This matters because for 6 months Fiona barfed every day, all day long. Fiona had/has Graft-Versus-Host-Disease in her gut (and her skin and eventually her lungs, but that's another story) At her worst, she was vomiting 10-15 times a day - and she had nothing in her belly.When this disease - a side effect of her transplant - was raging and not yet controlled, she subsisted on TPN through her central line. You can live on TPN, but not forever.

This was the fine-print in action. This disease was a somewhat desirable side-effect - a little is good, too much is bad, and way too much will kill you. A little is good because while the graft (the new immune system) is attacking her poor little body and cells, it would also be attacking any lurking cancer cells. But the disease cannot tell the difference and so just goes ape shit on everything - and sometimes doesn't know when to stop. 

She was 4 years old and was the same size that she was at relapse. She had gone from the 50th percentile to the 15th percentile on the growth charts - and we had 'em. Side note: We fucking love charts. Everyone told us to be patient. The chemotherapy, the immune suppressants and the steroids - they would all halt her growth, but not permanently. So we waited and we went through the long and slow process of weaning her off the high-dose steroids she started just before her 4th birthday when this hideous 'side-effect' disease spread to her lungs. That was when the doctors said "this is definitely too much of this and we need to supress it. Now." The upside of the steroids was that the eating started (think pregnant lady 2nd Trimester) and continued (think hot dog eating competition). Despite some pretty intense mood swings (think Joe Pesci in GoodFellas…or any film really) we were relieved to see her putting anything in her mouth and not having it bounce. By Christmas 2015 she was almost completely off the steroids but, like a correlated line on a graph, the eating had dropped off right along with it. We were back to her being 100% dependant on the tube and formula for her basic diet and nutritional needs and she still hadn't grown. 

We were no where.

Fiona had started Junior Kindergarten that year and every day at lunch time, I walked down to the school and would give her a bolus of milkshake. In some ways it was nice - I got to see her mid-day (good for my anxiety), I got to chat and visit with her teachers (who were and are amazing) and I got to scan the room for any snotty nosed kid who looked sick and could tell Fiona to stay away from them and make sure she doubled down on the hand-sanitizer that day. In every other way it sucked. Hard.

During the second half of 2015, we tried everything to make her eat. We tried catering to her - a diet of chicken nuggets, white rice and hot-dogs <dieticians around the world shudder> We tried strong arming her "You aren't leaving the table until you take 3 bites..." We tried bribing her "If you take 5 bites, you can go to the dollar store…" The only thing this accomplished was putting our blood pressure through the roof, turning every family meal into a negotiation the would put political leaders to shame, and my house slowly filling up with shitty toys from China. Even worse, every time we made any kind of progress, she would get sick. Over the course of respiratory season she ended up hospitalized three times because whenever she got a bug - any kind of virus - the vomiting started again and we would give back any and all progress she had made. It took weeks to get her to gain and keep a couple ounces of weight and a cold could start the vomiting and undo weeks or months of progress in a few days.

We were exhausted and frustrated and didn't know what to do. It felt like no one wanted to deal with this issue head on - It was still being viewed as a symptom and a side effect but at some point, her not eating had evolved into a stand-alone problem of it's own

So we pushed. We pushed hard. We made one of her nurse case managers cry - not from yelling or being cruel, but by finally articulating and getting her to understand just how important this was and how frustrated we were that no one seemed to be doing anything about it. We stopped accepting platitudes and, most importantly, I got on board. You see it was my husband who thought this was a problem and something we needed to deal with head-on far earlier that I did. I was too ready to accept the platitudes and defer to the doctors. In hindsight I realize that I did that not because I thought they were right and Tim was wrong; I did that because I was fucking tired and I couldn't face tackling - really tackling - an issue that was going to demand a lot from us and was going to take months or even years to solve. Feeding issues are not battles. They are wars. Trench war-fare wars. And I didn't want to fight. I didn't think I had fight left in me.

We got into see a GI specialist - thanks to the nurse case manager we made cry - and he listened, he heard us and we made a plan. He acknowledged that she had a stand alone issue of 'feed intolerance' and we planned to do three things. First, we were going to put in a G-J tube (one tube into her tummy, and one into the top of her intestines by-passing her stomach) This meant we could feed her overnight, by-passing her stomach at a slow rate all night long. This gave us a safety net for when she got a bug and the GVHD in her gut flared and gave us more hours in the day to nourish her. Second, we were going to start working with a Psychologist to deal with the food and eating aversion. If you puked for 6 months, you wouldn't want to eat either. Finally, he was going to do a scope to make sure there wasn’t something else there that we weren't dealing with - ulcers, scar tissue, blockages, etc.

Tim and I high-fived in the consultation room. We had pushed and now we had a plan. A real plan.

It was 18months since she had eaten anything, with the exception of the 3 months on high-dose steroids where she ate everything that wasn't nailed down. We got the tube put in pretty quickly and then we started working with a psychologist to get her head straight. She worked for almost 6 months with a Psychologist she knew from the hospital and they talked about eating and feelings and then they made plans together and food charts and goal-reward systems. It was a game of inches and we often had set backs but it felt like we were doing something, she was driving it and we were starting with her head. It also revealed that any kind of 'forcing' by us was not only unhelpful, it was hurtful to her progress. And it made me look - and feel - like a bit of an asshole. So. That was great.

We shifted our mindset and we started training her - Rocky Balboa style. If you don't use muscles for a long time, they wither and atrophy so you have to build them back up. While we didn't exactly make her carry a railway tie across her shoulders in the snow, it did seem that intense at times. We started with taking 2 bites at each meal. That was the goal. We watched her take her bites of something, chew the shit out of it and, eventually, swallow it. Then, eventually, the next bite would just sit. She would chew it forever until it was liquid and then she just couldn't get it down. She was worn out and we had to train her back up. This was effort and persistence and a kind of physical training that still astounds me. It also took for-fucking-ever. Some weeks we would step up to 4 bites at each meal. Some weeks we would stay the course at 3 bites or whatever. Progress was slow. Like a sloth had a baby with a tortoise and that baby just smokes weed all day slow.

In May I stopped going into the school to give her a bolus. In June I returned to work. We leveraged the G-J tube to feed her overnight and supplement whatever she wasn't getting during the school day (which was nothing really) and continued to watch her nutrition, hydration and growth very closely. In May and June she grew a little bit. In July she was holding her own at 17kg and we dropped one ofher daytime boluses. This month, we moved from constant overnight feeding to a 2 bed time boluses (one at her bedtime and another at our bedtime).

And then on Tuesday she ate her lunch. 6 crackers (triscuits to be precise), 3 slices of pepperoni, 1/4 cup of blueberries and a juice box. It took an hour and a half but her teachers were patient and encouraging and they let her take her time and she ate it all. And no one held a gun to her head.

Every parent knows there are two things you cannot make your child do - Eat and Poop. This has taken and level of patience and persistence and I didn't think I had in me - In fact, I didn't have it in me. I had to borrow a lot of it from Tim. And from wine.

It has taken two years to start to see progress on a side effect of a side effect of the treatment that saved her life. That's the fine print. 

From wearing her backpack 24/7 at Christmas 2014, to her 4th birthday, we struggled.

We then progressed from holding food, to going out for meals - who doesn't love a good cooked breakfast! - to actually remembering the enjoyment and pleasure of food. S'mores fix almost anything.