he’s emerging

I am beginning to remember why I wasn’t writing as often as I wanted for the last few years. Being the mother of a young child is time-consuming and exhausting. Add to that sleepless nights in the hospital and one begins to function on little more than cell memory. I am also realizing just how little of our boy we were seeing for a few weeks there because I had too much time for a three-year-old’s mom–altogether too much. I can happily say that is not the case right now.

Last week, one of our lovely supporters sent Caemon a box of light–flashlights of all different shapes, sizes and colors. It was just around this time that he hit a major turning point, and we began to see more and more of Caemon every day. Each day, he lets us slip a little more when we call him “Caemon.” He told me last week when I asked him directly if he was beginning to feel like Caemon, “I won’t tell you when you can call me that name again.” I’m telling you, he’s a little Buddhist monk. I think we’re finally figuring out this latest bit of wisdom.

This week has been pretty remarkable. Caemon has been eating bits of food every day. Bone marrow transplant patients often enjoy spicy and sour foods because they stimulate their very muted and distorted tastebuds. Yesterday, Jodi brought in a bag of jalapeno flavored Kettle Chips, and he ate them one after another, scooping bites of milkshake into his fiery little mouth in between. We repeatedly heard him delight in these foods with an Mmmmm! after every bite. A few days ago, his oncologist stopped by for a visit with a handful of Tootsie Pops. He immediately unwrapped it and popped it in his mouth. It was the first of these he had ever had. I was thrilled. Those who know us well might be amused, even alarmed, at our boy’s current diet, but I couldn’t be happier to see him eat junk food, to see him put anything in his mouth again. We have ample time to get back to healthy eating. Right now, the simple joy of sitting around and eating anything as a family is something positively precious.

Yes, you read that correctly. We get to eat as a family now. Prior to and during transplant recovery, families cannot eat in the room with the child. We have had to eat all of our meals in the ante-room next to Caemon’s. However, once the child’s neutrophil count is over 500 for three consecutive days, families are allowed to eat in the room together. Caemon’s counts have fairly consistently been climbing, and we are now able to have family meals again. He loves being able to feed us bits of food, and while he is still building confidence with food, he does seem to be enjoying those bites he is having. There are times when food is challenging because his tastebuds are very off right now from the chemotherapy. Some foods just don’t taste right, and he will tell us, “That doesn’t taste like I expected.” That’s hard to hear sometimes, but we know it will return.

Perhaps the best change in our son, though, has been the return of his voice, his smile, and his laughter. Caemon loves to laugh, and once something tickles his keen sense of humor, he completely loses himself in this wonderful rolling laughter that comes all the way from his belly. He has laughed like this a few times lately. I laughed, and then cried, right along with him. Today, Caemon delighted in hearing favorite music he hasn’t heard in some time, in reading books he hasn’t read since before transplant, in dancing around the room with me, and even building a bed fort with a nurse and doctor who couldn’t resist making some magic for a little boy. He didn’t nap today, and he hasn’t wanted to nap on the days he feels well lest he miss something. It’s like he’s soaking every experience in again, remembering what he loves about life. It is hands down the best thing I have seen in ages.

We have a little bit to go still. He still needs his platelets transfused every day, and his counts, while climbing, are a little sluggish to recover completely. It takes time for all of this to happen, but the talk of going home is in the air. Today the doctor predicted a week from Monday. I can buy that. We’re getting there.

Tomorrow, I will go home to lead a crew of generous souls in ripping out old carpet, installing new flooring, then cleaning and cleaning and cleaning more, and beginning the steps toward getting our home ready for the next phase of this journey. I hope we’re done with steep climbs and can just enjoy a steady pace toward wellness for awhile. We are all tired to our cores and ready to have our lives back. Moment by moment, we are getting there.

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.

the tiniest beacons

Two nights ago, Caemon had the tiniest of blips on his white blood cells. Since his conditioning, his white cell count, along with his neutrophils and other forms of white blood cells, have shown up on his readouts as < 0.1, or, in other words, pretty much nothing. That’s what the conditioning chemo is meant to do. It obliterates the marrow and all these cells so that the new marrow can take over. The blip a couple of nights ago brought his white blood count (WBC) to a meager 0.2, but it was just a blip. It was an indication that things might be percolating, or perhaps that there was something there that could do some percolating. Yesterday, the count came right back down to 0.1, but it had been nice to think about.

Yesterday, the medical team came in smiling for the first time since we’ve been here, really, but not about the blip. When they entered, our boy was standing on the bed holding onto me and talking–well, protesting their entry, actually, and demanding I not talk about him–but it was talking they hadn’t heard. They were beaming, and pleased his liver numbers were decreasing, that he hadn’t had a fever in nearly a day, and that he was up and had the energy to be surly and objectionable. I was too, for as challenging as a cranky crocodile can be, it’s better than a lethargic, apathetic, constantly sleeping crocodile. A crabby croc is one with fight.

Last night, Caemon needed blood and platelets, had a bit of a fever, and was having some pain that prevented him from swallowing again. The need for blood certainly wasn’t unexpected, as he receives blood products every day, but seeing him in pain again and seeing him start to retain fluid again bothered us. His practitioners had it under control, though, so I left to get some sleep, leaving Jodi to stand watch over the boy. He had a restless night. Neither of them slept well.

Perhaps growing cells makes it harder to sleep. This morning, our son had both neutrophils and white blood cells show up on his complete blood count (CBC). His neutrophil count was 40. His WBC was 0.3. While these are still just tiny jumps, they are cells that will grow into an immune system in Caemon’s body. They are his first signs of recovery. A little more good news came in the form of lower liver numbers–the lowest they have been in some time. I cannot begin to explain the sort of hope this fosters in me.

We still have a long road ahead of us, and we can’t know until we’re on the other side of this whether we have found the darkest of the dark days or not yet, but in this moment, those sparks and flares sure do look like traces of dawn.