Living in Backward Land

Living with a kid with a chronic illness like cancer is like living in an alternate universe.

As much as my common sense knows there is no sure-fire way to prevent anything, it’s still a bit galling to have been a natural birthing, extended breastfeeding, mostly-organic-feeding parent and yet STILL end up here. There was absolutely NOTHING to indicate Jack was at risk to get Leukemia. Hell, I even gave him Vitamin K orally after birth because I was paranoid about the larger dose in the injection (there was a study done a long ass time ago that shows a 2-fold correlation for Leukemia specifically after receiving the Vitamin K shot within the first week of life; there have been many studies since and the results have been mixed). None of Jack’s relatives have had Leukemia as far back as we can tell. He doesn’t have Down Syndrome or any other chromosomal abnormalities (they checked his chromosomes after his diagnosis). He hasn’t been exposed to radiation (he still hasn’t been to the dentist, you guys! and he was born in hippie country!). I didn’t have excess ultrasounds (two, I believe, the whole pregnancy), and he’d only had one x-ray before his diagnosis – back when he was 6 months old because he contracted RSV. He’s always been a hearty kid.

I did work in a hospital while pregnant with Jack, but NOT on the medical floors.

So yeah, one of the things I’ve had to wrestle with since hearing the L-word was WHY US?! I’m sure every family dealing with illness in any form struggles with this question but it feels extra shitty when you’ve done all you could to avoid illness.

In addition to that, so many of the ‘rules’ I used to follow in caring for Jack have been thrown out the window. As many of you know, we were a pretty “natural” living family – breastfeeding, cloth diapering, later introduction of solids, etc. Now? We are more likely to feed Jack processed and canned foods, junk food, and fast food. Jack’s phosphorous levels have been low quite a few times in the last six months – we were advised to get more canned and preservative-heavy foods. His sodium levels dipped – SALT BABY, YEAH! He started taking a steroid and his cravings were impossible to keep up with – we just had to feed him anything we could because he was so hungry he cried. The docs said that the more he ate, the better – putting on weight would be good early on because not only was he down a few pounds when we discovered the Leukemia, but he’d lose weight again during the more intense phases. Anything we could do ahead of time to preserve his weight would be good.

So, my kid who was breastfeed for over 2 years, who loves fruits and vegetables and always preferred milk and water over juice…has since eaten ungodly amounts of foods I had previously restricted – deep fried foods (i.e. fast food a couple times a week), fatty desserts (how about a milkshake??), high-sodium items like pickles, hot dogs, and Top Ramen. I’m now more than happy to hand him cookies or cupcakes for breakfast, but damn if he will eat them! The chemo has nearly destroyed his sweet tooth. I *wish* he would drink the juice the hospital offers him after his spinal taps (since he can’t eat 12 hours before them)…

When it’s not some sort of food that under normal circumstances I’d offer a whole lot less, we have situations where he wants bizarre things for breakfast – today he had edamame and salami! I got some Breakfast Essentials (fka: Instant Breakfast) into him, too. [Sidenote: It took some convincing a month or so ago to get Jack to drink ‘chocolate milk’ for breakfast since we’d been so successful in defining chocolate as a dessert previously!] I can’t tell you how many times I’ve encouraged him to eat a protein bar.

Diet aside, the dude wears sweat pants and sweatshirts in summer. Going outside isn’t exactly encouraged anymore – not only is his skin more sensitive to the sun, but he is prone to headaches and the light bothers his eyes…

It’s not just him, though. My therapist has encouraged me to drink more wine. There are many reasons for this, and believe me, my therapist isn’t wrong (can you say frequent close encounters with a narcissistic ex?) – but my diet already went to shit before I was told that drinking was a GOOD idea. I eat my feelings regularly these days.

I’m not so much writing this to rant or complain as much as I am to say that this is the thing that has led me to LET IT ALL GO. Control is an illusion, especially when parenting…remember that if your kid is happy (even if he IS fighting Leukemia) that smiles are fucking fantastic! And if you see a parent who is feeding her seemingly-healthy child a gigantic chocolate milkshake and a pound of fries with ketchup, please don’t judge. It may be the only thing that kid will eat today.

And even so, the parent may still be flogging themselves behind the scenes.

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Growing Boy

Wow, I just realized I have only written four posts this month.  Crazy!  I don’t even know where all that time went.  I guess I’ll claim to have been sitting and doing a lot of deep thinking!

Jack seems to have gone through a growth spurt.  I didn’t really notice a change in his appearance but I did take note of the increased food consumption.  Suddenly his Medium diapers are on their last snaps and his clothing stash is pretty thin even though I just bought a bunch of summer clothes in June.  He has a few pairs of shoes that suddenly don’t fit him anymore, too.  It’s amazing how quickly toddlers go through stuff!  Of course, this all happens after his birthday party.  Isn’t that how life always goes?

I’ve been meaning to read up some more on toddler nutrition.  We still have Jack drinking whole milk but I do believe at some point we’re supposed to switch to 2% or something.  I am not too worried because Jack is good about regulating his food intake, and he still prefers mama’s milk over what he calls “chocolate milk.”  I haven’t made the switch because I vaguely remember reading an essay on staying with whole milk longer than 2 years.  Nevertheless, I’d better get on that research.  Knowing the answer will relieve my anxiety about the subject!

I was finally able to get Jack to come around on squeezable yogurt!  We found some organic yogurt in tubes and I figured the novelty would renew his interest.  He wasn’t too sure for a while there but over the last few days he has seen the light.  He asked for the yogurt last night and giggled after every sip.  He ate the whole thing.

Back to Normal

Our household is recovered.  Yay!!!  Jack seemed like he would never get well and then BAM!  He’s totally back to normal.

I’m stressing about his food intake, though.  Before he got sick he was hardly drinking any expressed breastmilk during the day, and only sips water.  Now he’s cut out milk completely.  Joe has tried sippies, straws, bottles and none of them seem to persuade him.  That may be okay since I nurse at least 3-4 times each day but he is not eating enough solid foods, either.  The best I can tell, he is getting maybe 400 calories a day from solids.  In total he needs about 1300 calories a day.  I estimate he gets about 400 from me but it’s (obviously) hard to say.  He used to be in the 85 percentiles for height and weight, but has dropped down to about the 30th.

We are visiting his pediatrician next week for his 18 month check up but I’m nervous because this is the first time I don’t feel confident about Jack’s intake.  I don’t have much trust for doctors and this one has never seen us before.  There isn’t anything we could be doing differently, though, so I know I shouldn’t worry so much.  Perhaps it is a phase, or maybe it will get better when he is back at daycare with a real schedule and other kids around encouraging him to do what they are doing.

Other than that, we’re spending our time talking about colors a lot.  With Jack’s recent discovery of crayons, he is fairly obsessed.  It’s not enough, though, to color by himself.  No, he wants to watch US color.  We’ve been pointing out the names of colors (last night we had a lesson about the colors of his diapers) and he’s been adding to his vocabulary.  So far his favorite is definitely yellow.

We’ve also been reading counting books and Jack pretends to count constantly.  It’s pretty damned cute when he randomly says, “two…twee…fah…”  I *think* he is starting to figure out the correct order but it’s hard to say.  Last night I showed him  how to hold  up the number of fingers but that is going to take a ton of practice.

It’s fascinating to me to see how kids learn.  I truly am amazed at how human beings function.  As I was sitting in a meeting at work today, I looked at the presenter and pictured him as a child learning the basics of math.  It was then that it hit me that someday Jack is going to grow up and be an expert on something.  It’s going to be so weird!