on ice

We learned today that Caemon’s donor cells are here. His donor underwent surgery yesterday. His doctor says they asked for a slightly larger sample. This will help in a couple of ways: first, Caemon and his donor have different blood types, so it is necessary for the red blood cells to be filtered out of the marrow to avoid a reaction. This filtering process results in slightly fewer stem cells (bone marrow cells), so having more cells to begin with aids in the overall number later. Also, because the cells had to be frozen, and because this does result in some cell loss, they also wanted to make sure there were ample that would survive the thaw. Knowing that this whole process was taking place right here at the hospital today has been a little intense. The bone marrow that is going to cure our son is present. It is just waiting for the right day. Our countdown has us at Day -7 today. A week from today will be transplant day. Day zero.

So far, Caemon is faring well. He has been receiving one chemotherapy drug since his arrival in the BMT unit (Busulfan). It replaces what used to be radiation therapy, causing fewer side effects and resulting in less toxicity. However, because it can cause seizures, Caemon must take a preventative medication to avoid this effect. So far, he has been given Ativan, which is a tricky drug for a kid his age. As I mentioned a few days ago, Ativan can make kids feel mellow and loopy, or in some cases in children Caemon’s age, it can have a bit of a reverse effect. For Caemon, the results have been unpredictable. With his first few doses, he was just rather happy and calm, but subsequent doses, and particularly those in the middle of the night, have resulted in some insomnia and some fairly wild behavior. After plenty of consultations today, we have opted to change him to a different medication that does not have these side effects. We’re hoping it does the trick so that we can all get some rest and enjoy our boy’s more predictable moods again. Fortunately, he only has one more day with the Busulfan. We will be grateful for this chemo drug to be finished, as it has our boy smelling of toxic fumes. It is a very surreal thing to watch as poison is being pumped into my son’s body. You would never know it from his laughter and very normal play.

All the drugs aside, life behind the double doors is requiring a fair amount of adjustment. While Caemon could previously visit the playroom or walk around the halls with his IV pole, he must now remain in his room at all times. No one may eat or drink in his room (except for him), so his love of sharing food with us is more challenging. We do have an ante-room with a window into his room where anyone entering must scrub in. We can eat there, and he can watch us (although he may not enter that room), so if he wants to give us a bite of something he is eating, we let him hand it to us, and we run into that room to show him that we’re enjoying a bite of whatever it was he has shared. It’s a funny dance we do to keep him happy, but anything we can do to ease this time for him and to help him feel any sense of normalcy is so important because the moments of frustration are intense and hard on everyone. Fortunately, Caemon is recovering quickly, and as always, the amazing staff here does wonders to help calm him and distract him during these difficult moments when the poor boy must feel his world has been turned upside down a few too many times.

Unfortunately, the subject of food had started to be one of those areas that was causing us all more than a little stress. When we were home, Caemon was craving tuna sandwiches and wanted them for every meal. We were thrilled with the opportunity to throw in lots of calories with mayonaise and estra olive oil, but once we returned to the hospital, and he had to order food from the menu only (or eat single-serve, prepackaged foods), he was fairly disheartened that his tuna sandwich kick had to end abruptly. As before, we’re finding that these circumstances breed creativity, and we found solutions. Not only did we find single-serve cups of tuna, but we also found tiny single-serve packs of mini pickles. We order bread and mayo from the menu, and we make sandwiches in his room. He loves it, and he is eating beautifully, even trying some new foods from the menu. Yes, these are just tuna sandwiches–nothing much to think about under most circumnstances, but here and now these are significant victories to us. Seeing our son eat right now is just magical. Even more glorious is hearing him vocalize through each bite “Mmmmm!” and “Yum” and “That’s good.” Today, as he kept eating his enormous sandwich and munching on crackers, he told us, “It just keeps hitting the spot!” Anything that does that, we will find a way to give to him.

I feel particularly delighted with his enjoyment of food right now because there will be a time not long from now when Caemon will not eat. He will almost certainly have severe mucousitis, a condition caused by chemotherapy resulting in sores in the mouth and all down the digestive track. It is extremely painful and most all patients going through this type of chemo must eventually begin IV nutrition (as well as round-the-clock pain medication) when the sores become too painful. We dread this. As his mothers, Jodi and I have spent Caemon’s whole life feeding him. It will be hard for this to be taken away for awhile, but we also know it will be what his body needs to continue healing. I am reminded, however, of Eric Carle’s famous Very Hungry Caterpillar, eating his way through anything in sight, preparing for that precious time in his cocoon when he wouldn’t eat at all. I know our boy’s emergence will be just as glorious.

This is a very intense time here, but it is not without joy and light and a good deal of hope. We are making our way through this day by day, and our son is showing us so much strength, so much resilience that we can’t help but learn a thousand lessons from him each day.

8 thoughts on “on ice

  1. I too am thinking of you every day. Your positivity and perspective on this is nothing short of amazing and he is a complete reflextion of his moms.

  2. “It just keeps hitting the spot!” made me laugh. What a sweet boy he is. It’s amazing how resilient Caemon is in the face of all these hurdles. I love your hungry caterpillar analogy too. Thinking of you every day.

  3. Your post brought a smile to my face and tears to my eyes. Simultaneously. Hearing that Caemon is so enthusiastic about his eating is wonderful. It is a bit of needed good news today what with all the bad that seems to be happening. Good luck with the new medicine.

  4. Amazing little boy, he is wise and strong well beyond his years. Happy he is enjoying his food these days. Sending all the best to you three!

  5. Your family is so amazing. How precious that you created an environment for him where he can still smile and laugh. Despite the reality of everything going on around him….. Your strength, endurance and resilience is such an inspiration. Thinking of you all daily.

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