be careful what you wish for

I just returned from my first night at home in over a month. I guess I shouldn’t complain about being homesick, or I might land there longer. It was a precautionary measure, really. Three nights ago, as I was riding the night shuttle to the family house away from the hospital, the driver started coughing and complaining of a sore throat. I was sitting directly behind him as he continued to cough the duration of the trip, so I knew I had been exposed. Then, two nights ago, I found myself up with a wide-awake Caemon until after one in the morning.

Yesterday, when I made my weekly trek to the house, I was exhausted and run down. By the time I was readying myself to return to the hospital, I felt worse–heavy, lethargic, utterly worn out. I was worried I was catching that cold, so I stayed. I couldn’t risk exposing Caemon to a cold (for even the common cold would be dangerous to our boy with no immune system). That was the first twenty-four hours I’ve ever spent away from Caemon. I awoke today feeling much better but definitely ready to return to the hospital because our home scarcely feels like home without a little boy running around and making noise.

I returned to the hospital today to learn that we’re now concerned about Caemon’s weight. He has lost a couple of pounds since his diagnosis, and his doctors want him to be about four pounds heavier. This is disconcerting, and we’re trying just about everything we can to get him to eat. He’s just not interested in much. Unfortunately, his mouth sores have started to return. Mucositis–a breakdown of the tissue in the mouth and digestive tract from chemo–is what he is experiencing. This is making eating harder again, and we think it may be further down in his belly too, which makes it harder for him to want to eat at all. We had been under the impression that the side effects from this latest round of chemo were over, but, in fact, we’re told that this is the time when they are worst.

He is also beginning to lose his hair. This has hit me hard today. There are little pieces of it all over the place–his neck, his clothes, my clothes. It’s like he’s just had a very messy haircut. It has to be positively annoying. We may pull out the clippers again just to help it along, but I think we’re in for some annoying times with this. At least it’s not long, and at least it won’t be a shocking transition to see him without hair. However, there is a stark reality to this, something I hadn’t fully expected. Jodi and I have both wanted to shave our own heads in solidarity, but Caemon has asked us not to. Perhaps were he a bit older we would, but he likes us the way we are, so the way we are we stay.

As hard as it is to face all of this again and again, I’m glad to be back, and so far, illness free. I hope to work on lifting our boy’s spirits in the coming days as we wait for his counts to come up–his spirits and his number on the scale. Any tips anyone has for either one would be welcome.

18 thoughts on “be careful what you wish for

  1. Hair loss has got to be one of the more difficult parts of a cancer diagnosis. It is usually the first question someone asks when being given such a diagnosis and the first thing people think about when they hear the word chemotherapy. The look of a chemo patient who has lost their hair is very iconic and I can only imagine how hard it must be to see that look in your child. I’m sorry. And I’m sorry to hear about the weight and mouth sore troubles. Wish there was a way to ply him with ice cream and cake that he would enjoy and that would help keep on the pounds. I’m glad you are no longer feeling under the weather and can get back to him tonight and continue being his rock.

  2. I’ve been following along (with loads of prayers and thoughts for your trio and your little boy). Would he be interested in frosting (yup, frosting)? I used to work in a children’s hospital and we had an oncology patient who would eat frosting when she wouldn’t eat anything else–not exactly a health food, but she needed fat and calories more than she needed anything else at that point.

  3. I know he likes cooking and appliances, would having a sesame street sandwich maker help? Would the hospital allow you to cook with one in his room? We use while traveling to make french toast and quesadilla as well as grill cheese. I am not sure if those foods would be too rough still for his mouth and tummy but maybe later on? Here is a link to what we have.

    I can really see why he would like his parents to look the same as always. That is probably very comforting in this time of so many changes.
    Hugs for all of you always.

  4. Does he still tolerate yogurt? I figure it would be easier to swallow since it has a smoot consistancy?? Maybe you can do the same thing you all did with avocado…get him plain yogurt and have him add his favorite things. My picky eater loves to experiment with flavors… have him pick his favorite topings and let him mix it and try it?

    I hope this helps… (((HUGS)))

  5. i would consider a mickey can be temporary, and its a good way to get extra calories in him! my son has one, and its a life saver..he has moebius syndrome and he cant really eat solids, and he has a bad oral aversion as it is, so we just squirt the formula into his belly, and he stays fat and happy!

  6. one of the favorite childhood snacks in the neighborhood where I grew up was frosting on graham crackers. If there wasn’t frosting, we used butter. Another popular neighborhood favorite was flour tortillas (made with lard) spread with butter (and sometimes sugar) and rolled up. Both are excellent comfort foods and pretty easy even for young’n like Caemon to make himself. And a good, high-calorie favorite of mine (even today) is peanut butter and bacon bits sandwiches – it works best with a sweet peanut butter (Peter Pan or Jif) and real bacon, not fake-os. And something I do with Silas now for a quick, high protein snack is full-fat yogurt (usually vanilla sheep or goat) mixed with some kind of nut meal, like almond or hazelnut – he slurps that down just as fast as he can get it in his mouth. Hope this helps out – it’s the worst to know you need to eat but lack the desire.

      • Absolutely. Unfortunately ,our struggle here is that we’re limited to what we can get from the cafeteria or what we can store at room temp in a very small space. Some days we have added half and half (when they’ll send it to us) but other days, it’s whole milk. Coconut oil, though, we could bring and have here. That’s another great option.

  7. What about some chocolate or vanilla mousse? Could he do a kids protein shake through a straw? What are his fav flavors? Thinking of you guys always. Hang in there friend. xoxo

  8. Sesame butter, cashew or almond, mixed with honey? (May be microbes in honey though) Slippery elm is old-time mucous lining soother and is fairly nutritive as well. Hey, What do they feed a caemon, anyway?–Crawdad shish-kebabs and frog legs?
    Love to you all, and oh, get a lint roller for the hair. Chin up.

  9. I’m sure you’ve already thought of this, but I’m just thinking that anything taken by straw might be easier on him. Smoothies made with full-fat greek yogurt and milkshakes (even “warmed up” milkshakes if he doesn’t like cold things). I don’t know if he likes eggs, but they’re soft and full of great nutrition. Peanut/almond butter…cottage cheese. Best of luck with this and hugs to you all.

  10. So glad you did not catch that cold full-on! If Caemon likes cold things, I would mix up pureed fruits and add heavy cream, avocado etc….and make “ice” pops (he can help as he loves to cook so much). I have also added powdered infant formula (lots of calories and vitamins), to puddings, oatmeal, mac n cheese, cereals, yogurt, pancake mix, scrambled eggs and as a substitute for milk to bake with (the nasty taste is often masked when mixed up-and some formulas do not taste as bad (we used Similac Sensitive). Cheese, sour cream, mashed potatoes and honey are also good “add-ins”. Pediasure (if he will drink it) can also be useful. I would often make faces or animal shaped arrangements on the plate…my son would enthusiatically eat the parts of the face/animal (while laughing hysterically) as I would say “oh no you ate the eyes-how will he see?, legs, ears” etc!!!!. This would encourage eating a variety of foods, as well as made it creative, fun and interesting! I have also put various foods in the cups of an ice cube tray or muffin tin. Also fun, and Caemon can help choose what goes into each compartment and create the tray. It is visually interesting, and can also be made into a game (how many cups/compartments can you finish?) I Hope this is helpful. Good luck getting your little guy to eat more and have fun while doing it!

  11. Our mutual friend “C McD” was just telling us about her edible playdough the other day — peanut butter and flour with a little honey, as I recall. I know your boy digs playdough, so maybe he’d enjoy getting to eat his creations?

  12. Would you be able to use an immersion blender at the hospital? Then you could make smoothies, he could pick ingredients he likes, and maybe the appliance aspect would be exciting…..

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