gold stars for croc

This morning, because we needed some tangible outcomes on which to focus, my wife made a list of goals for the day. The list included the following: lower base level of pain medication, require fewer boluses (extra doses) of pain medication, get out of bed, take a few sips of water. Honestly, it seemed l like a very optimistic plan, but I think we both felt that if anything on the list was accomplished, it would be a pretty great day. As it turns out, our little Croc helped us checkoff every item.

Less pain medication: Because Caemon’s pain is decreasing, we talked with the attending doctor and agreed with her that the pain medication could start to be tapered down. Obviously Caemon is still healing and will need some pain management, but he has also shown signs that he is getting more than enough and is ready to taper off a little. We knew that we could always increase the dosage again or ask for more boluses should he be in significant pain, but as it turned out, decreasing the pain meds showed no difference except in his level of fatigue. Caemon felt well enough today, in fact, that he skipped his nap. A week ago, he was sleeping all day.

Fewer boluses: On top of reducing the baseline, we were hoping Caemon could get away with fewer additional doses (boluses) of his morphine, and sure enough, there was only one bolus needed at the end of the night after a bit of coughing, which was surely rough on his raw little throat. One bolus is a big deal after receiving several a day for the last couple of weeks.

Out of bed:  Caemon gleefully walked around his room today, played games at the window of his ante-room with me, picked his own clothes out of the closet, and continued to walk around to sit in a chair. I saw genuine smiles on his face, true joy. It was lovely to see him moving and looking more like himself.

Sips of water: Jodi handed Caemon a bottle of water late this afternoon just to see what he would do with it. The boy cannot resist sports-top water bottles, so he immediately opened it and took a swig. I have never been so happy to see my son drink water, yet as the day moved on, and he drank more and more water, I was brought to tears more than once. Drinking will soon lead to eating, which will soon lead to feeling a whole lot more human, and, well, leaving the hospital eventually.

Every last one of these goals were met, and a little unexpectedly, but our son is starting to return. He is fragile, sensitive, much like a brand new butterfly, but he is becoming more and more an active participant in his world again. It is such a beautiful thing to see.

As if today weren’t lovely enough, we received news this evening that his neutrophil count was over 700. Now, this number can fluctuate, but this is a phenomenal number. On the other side of the double doors, this was a going home number, a no longer neutropenic number.

On our side of the doors, we still have some work to do. The counts are going to go up and down a bit more, and eventually, we’ll need to see them stabilize. While the liver issues are certainly improving, we have to see them continue to resolve. We are still seeing Caemon need platelet transfusions every day, so he will need to be able to go without these for several days at a time. And, ultimately, Caemon has to be able to sustain himself on fluids and foods, and he has to be able to take a number of medications by mouth. After a day like today, though, goals like these seem far more attainable, and we can only help him continue emerging safely and securely. Seeing him meet one goal, one milestone after another, it is becoming clear that home is in sight. Right now, after all these months in the hospital, such a notion feels very, very surreal. We have a lot to do, a lot of planning and cleaning and preparing to bring our boy home, and I plan to visit this in a post very soon, but for today, I want to revel in this progress, for it has been a very good day for our little Croc.

a mama’s metamorphosis: a guest blog from Jodi

As many of you know, my wife knows her way around the English language pretty well herself, and she finally has had time to contribue a post of her own to this space. Enjoy; she’s amazing.

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Caemon and Mama

In the post-transplant, post-Christmas, and in-between-semesters lull, I may actually have carved out a moment to write something of my own about Caemon’s diagnosis and journey to healing. I can’t say enough about Timaree’s contribution in this arena, however. Her writing is beautifully expressive and has helped our family process this experience while also coalescing a community around us. What I can add to this blog or to that effort, I don’t know. I only know that today, I must write.  

Right now, as I type, Caemon is across the street at the hospital where he has been almost exclusively for over four months. He’s being prepared to receive blood and platelet transfusions. This will likely be a daily occurrence for some time until his blood counts recover. His body is suffering the effects of hard core chemotherapy from the pre-transplant conditioning; at the same time, his new marrow is settling in, and we very much hope there is not a battle between the new and old (something they call graft vs. host disease).

Last night was my night to sleep away from the hospital, as it is every other night.  It’s one of the more emotionally difficult aspects of this journey, having to sleep away from my family, and yet it is the only time I sleep uninterrupted, so it is necessary in order to maintain any sort of emotional or physical health.  Even so, I am exhausted, and there are days, too many I fear, where I wonder where I will find any more energy. But I look at him, my precious boy, and I think to myself that no matter how tired or fed up with hospital life I might be, he has got to be so much more so. This knowledge gets me through a lot of days; other days, I rely on the compassion and strength of any number of people: generous colleagues, friends near and far, hospital staff, and of course my wife. I don’t think I have ever relied on this many people for this long for anything, ever. As much as Caemon is now being transformed from a bedridden child with cancer into a healthy, normal boy, I too am transformed.

Just a few weeks after Caemon’s initial diagnosis, I met a woman—a mom—in the pantry while fetching a pitcher of water. She had clearly been here a while and was wearing what has become a very familiar expression of parents here on the pediatric oncology unit. We parents see it on each other’s faces and recognize it, a heaviness born of fear and exhaustion, a haunted, helpless, sleep-walking –through-a-tunnel, focused-only-on-what-has-to-be-done-right-now look.  These aren’t really adequate descriptors either because look a little deeper, and you see resolve.  But once in a while, you see it: resignation. This woman was tired and very much on the verge of tears. I asked a question we parents here don’t really ask that much because there is no adequate answer: “How are you?”

She went on to tell me in broken English that her 15 year-old-son had two inoperable brain tumors and that he was being transported back to his local hospital because there was nothing his providers could do for him here. What she didn’t need to say was that he was being sent home to die, for when this place can’t fix your kid, you are being sent home to watch your child die. I didn’t know what to say. I’m not one of those “I’ll pray for you” people, and “I’m sorry” is so insufficient as to not even warrant an utterance. I just reached over and gave her a hug; honestly, it’s all I had. She hugged me back, and we looked at each other without words. In that moment, I was transformed.

I’m also not a “hug a stranger” kind of person, but there I was embracing a woman I had never met and whose name I still do not know. I walked away after a few minutes feeling the weight of that woman’s impending loss heaped on top of my own weight. I carried it as I walked back to my son’s room and then left it in the hallway because I cannot carry it and still function as Caemon’s mother. But I will never forget her or what that moment meant to me.

Life experiences have forced me to be strong, to bear a lot of pain, to suck it up and get through any number of challenges without much self-pity. I can’t say I haven’t been an angry person for a lot of my life, a personality shortfall I have worked hard to overcome and a flaw that the arrival of my son has greatly helped me to reduce. Some will be surprised to learn that when Caemon was diagnosed with leukemia, my first instinct was not toward anger but toward something wholly different. I simply knew, though don’t ask me how, that we were all going to be okay, that it was going to be hard, the hardest time in our lives, but that he would survive, and so would we. I would not tolerate pity from others or doomsday predictions about where his disease was headed.

When offers of help poured in, I felt no guilt, no pride, no suffering of confidence. I couldn’t cure my son or get through this alone. I needed all the help I could get, and all offers were accepted. From offers of prayer to help with my house and pets, to donations and fundraisers, I said yes. People offered advice, gave us cards with phone numbers which we called. Strangers in waiting rooms, friends of friends, people who only existed as internet pixels; they all wanted to help, and I would turn no one away. Just as I carried a bit of that woman’s weight that early autumn day, each of these people have carried a little bit of me, and I daresay of my wife as well. When people do this, I am able to walk into my son’s room and make him laugh or to leave for a few days to teach my classes and come back slightly less fatigued; I am able to prepare a home-cooked meal for my wife or run much-needed errands; I am able to sit up half the night with a crying boy and still function the next day.

I accept all offers of help and, when I am able, try to pay it forward, because it is the only way I am able to walk this journey. It means I have to be humble and accept that I cannot do it alone, that I am part of a larger community that is compassionate and strong, and that surprisingly not all human beings are succubae, that there are people in this world who give a flip about me and my family with no strings attached. Believe me when I say that I was previously not so inclined toward this view of humanity.

So what will I do with this? I will raise my son to know the truth about people, that they are good and can accomplish amazing things when they work together. I will similarly pass this on to my students when they naively assume the worst of people. I will love my wife and my friends openly without hesitation, and I will smile at people, hug them when they need it, and lift them up any way I can. Saving my son has required me to receive the best of people; I owe it to everyone, including myself, to return the favor.

J30

The beautiful images in this post are courtesy of In Her Image Photography.

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