A Few Breaks in the Clouds

I have spent a lot of time focusing on the challenges of our lives here lately because I want to be honest about what we’re going through, to keep an authentic chronicle of this time in our lives. Every so often, however, we are blessed with a bright spot, a moment when we’re lifted from the heaviness of all of this, when little things allow us to smile or breathe a little easier or even celebrate.

Today, during a joyful visit from the grandparents (wherein Grandpa gained two or three PICC lines from Nurse Caemon), we learned that Caemon’s platelet count came up. This was cause for celebration. Caemon has needed platelet transfusions every 48 hours or so for the past month. Every day, we ask for his platelet count first, and it’s always lower. Some days, he has needed platelets for a few days in a row. This is due, in part, to his enlarged spleen, which traps platelets, keeping them from being used by the rest of the body, and also, in part, to his bone marrow being taken over by cancer cells. This has kept his bone marrow from producing sufficient platelets for his body. Normal platelet counts are between 150,00-400,00. He is far from this at just 21,000 today, but this is up from 13,000 yesterday. This is a leap his body has not made since his diagnosis, and it’s such a good sign that his body is starting to do something it’s supposed to do.

Caemon’s other counts are starting to inch up just a little too. His body is starting to show signs that it wants to recover, so we’re seeing slight increases in his neutrophils (white blood cells that make up the immune system) and his overall white blood cell count. What we really hope is that when we see the bone marrow biopsy, his “blasts” (leukemia cells) aren’t also growing again. An absence of blasts would mean a clinical remission, which would be our ticket home for a few days.

Also on the rise is Caemon’s weight. It is up just three tenths of a kilo, which doesn’t seem like much, but it’s almost a pound. On a little guy who needs to gain four pounds, this is a pretty big step! People are very much wanting to help in this matter. Caemon’s oncologist brought him a handfulof Kit Kats she bought on a recent trip to London. Our social worker delivered a bag of See’s chocolate pumpkins today. One of his nurses regularly brings him cream-top yogurts. It’s wonderful. We also have our dietitian, who comes in to check on him and to brainstorm other foods we might give him to fatten him up. Today, she asked Jodi whether Caemon likes foods that he can make in a blender. Apparently she is “working on something,” which in hospital land is something akin to magic. She’s already gotten us a small spice stash, but it seems she may be thinking on the appliance plane now. I can’t wait to see what she comes up with.

While she’s trying to help Caemon pack on the pounds, she and our social worker have been hard at work to help Jodi and I gain access to the gym here at the campus for a very reduced fee (after our inquiry into a membership for parents). So far, we’ve got some day passes, but apparently meetings are being held, and we’ve gotten them back on a mission they had started before to make access to the gym very easy and affordable for parents. I can only imagine how many parents would benefit from the respite and reprieve that this sort of access would offer. I hope it works out in everyone’s favor. In the meantime, we’re looking forward to opportunities for movement and places to release some of the frustrations that come with going through the most difficult challenge of one’s life.

The beauty of this will also be that the gym is located right across the street from both the hospital and our new room at the house for families of hospitalized children. Jodi and I have been taking turns getting good nights’ rest at one of these family houses (not unlike the Ronald McDonald House) since we were admitted this time, and it’s such a helpful thing to be able to sleep without interruption, take a shower, prepare meals, and just experience some peace and privacy. The previous house was a decent walk from the hospital (or a fifteen minute shuttle ride at night), which wasn’t so bad, but it wasn’t entirely practical for a lot of purposes (laundry, preparing food, getting back in a hurry, etc.). We unfortunately had to call and report some unsavory activity from one of the families staying where we were (leaving dirty bathwater in the common bathtub overnight was just one example, but really the final straw), and when we did, one of the directors offered us a room at the most coveted location just a block from the hospital. We were hoping to be on the waiting list for this house soon since we’re expected to have such a lengthy stay, but it seems that timing was on our side today, and now when one of us needs to get away, we’re just moments away–and there’s no waiting for a shuttle or a cab or a bus. I will honestly miss the walk back in the morning, but from this location, I have new places to walk–like the most fabulous,cozy natural food market I recently found. Yes, there are things about living here in the city that I am starting to enjoy just a little. I’m also excited to be able to go cook and bring food back to Caemon–foods he recognizes and enjoys, foods all three of us need to nourish our bodies and souls a little more. It’s such a relief thinking about this.

The best thing of all that we’ve experienced in the last couple of days, though, is the return of our boy’s laughter. Yesterday, when Jodi returned from teaching, she brought these little frogs with magnetic legs that we hang from one of Caemon’s lamps at home. I proceeded to try to hang them from various hooks and things on the ceiling, throwing them and missing over and over again. Cue hysterical laughter. He couldn’t stop. It was beautiful. We tickled him, and he laughed. Today, when we went to the playroom, he told me he wanted to maul me, which meant he needed some good “rough” play, so I flung him over my shoulder, tickled him, let him climb all over my back, and we laughed and laughed. I think we had all forgotten how much we love to laugh as a family, but this week, we remember, and we’re going to do as much of it as we possibly can.

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9 thoughts on “A Few Breaks in the Clouds

  1. Carol Allison

    I have tears again, but different ones than yesterday! What a wonderful lift! You are well deserving of some good news, that is for sure!

    Reply
  2. Helen

    So glad to hear things are getting better. Great to hear that Caemon is feeling better and “packing” on the pounds…also great that the housing situation is more convenient (and pleasant without those inconsiderate housemates). So happy for you…by the way, while reading this my 15 month old was in my lap, she saw Caemon’s photo and immediately smiled, waved hello and threw him a big kiss! Lots of love being sent your way! Caemon is beautiful (as is his smile)!

    Reply
  3. Gia

    Yay, Caemon! Sending thoughts and prayers your way! Hoping he gains the weight and he gets to go home!

    Love his picture! He is darling!

    (((hugs)))

    Reply
  4. Christine Marks

    Caemon is an amazing boy and has two amazing moms!! What a journey. So nice in the midst of all this, you can see the bright things in life and even laugh. So important!
    Thank you for sharing this journey with all of us…..you do not walk it alone. Love and positive thoughts sent your way!

    Reply
  5. Roger Williamson

    I could hear the laughter from here! Nothing like frogs–I just read in “Sierra” mag that the 7,000th known frog species was found, a new Amazon glass frog. Have you ever kissed a frog, Caemon? (They really don’t turn into anything at all, and they’re kinda yucky!!) Blecchh!
    Did you try the Sesame butter and honey? Heck, tahini is great with everything!
    Bananas, bread, apples, cheese, olives, never tried it on sardines, but maybe?

    Wikipedia–Tahini is an excellent source of copper, manganese and the amino acid methionine. Tahini is a source of the healthy fatty acids omega-3 and omega-6.
    Tahini made from raw sesame seeds is lower in fat than tahini made from roasted seeds.
    Tahini’s relatively high levels of calcium and protein make it a useful addition to vegetarian and vegan diets, as well as to raw food diets when eaten in its unroasted form. Compared to peanut butter, tahini has higher levels of fiber and calcium and lower levels of sugar and saturated fats.
    In a word–YUM!

    Sleep well little one–dream of pine trees! Love, granduncle Roger

    Reply
    1. T Post author

      Caemon says that while he has not kissed a frog, he has kissed a snake. In fact, he rescues countless garter snakes that our cat Cleo brings to him. He is quite the reptile whisperer.

      Unfortunately, while he has had tahini in the past, he can’t have it anymore. In fact, we had to come up with a new hummus recipe for him (hummus is one of his favorite foods) because we couldn’t include tahini anymore. The poor guy is allergic to sesame! Instead, he does like almond butter quite a bit, but right now, he doesn’t seem to like any nut butters for some reason. He’s on a potato kick. We’ll take it.

      Reply

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