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.

waiting out the weather

I find myself using a lot of mountain-climbing metaphors when I talk about Caemon’s illness. I haven’t ever climbed a mountain, but the mental and physical demands, the hazards and potential for mishaps, and of course the glorious summit and descent (during which there is ample danger as well) seem to fit. As we have reached the end of Caemon’s chemotherapy and are headed toward his bone marrow transplant, I keep imagining us at base camp. We’re getting oriented, making plans, studying our maps and checking our supplies. We are all ready to go up the mountain.

But this weekend, a blizzard has come through, and it’s just not safe to climb.

Tomorrow, Caemon was scheduled to enter the Bone Marrow Transplant Unit. Unfortunately, on Thursday night, he spiked a fever. Another came on Friday night, and yet another on Saturday night. The BMT doctors don’t want Caemon starting the transplant regimen until he is fever-free for 48-72 hours. He can only be admitted on a Sunday or Monday because certain tests must be sent away on certain days to certain labs, and any other schedule would make this impossible. Therefore, we learned today that our move to BMT won’t be delayed by just a few days. It will be a full week, perhaps two if Caemon doesn’t stop having fevers.

Our boy’s body is telling us he is just not ready for this yet. Some sort of infection has entered his system. Many of his blood counts are on the decline again, particularly his neutrophils (those white blood cells that make up the body’s defense against infection). At this point, we want to see cell recovery, not decline, and decline of most of these is indicative of fever and infection.

The past couple of days have been spent trying to figure out what that infection might be because the fevers are his only semi-consistant symptom (and even those only show up once a day). He has had blood cultures taken, plenty of physical exams, and then today, he had both an eye exam and a CT scan. The last of these is an attempt to smoke out any fungal infections that may be hiding inside Caemon’s body, particularly his organs like his lungs or liver or spleen. So many of these procedures are no small matter. The CT scan, for instance, required general anesthesia and recovery in the ICU (the first because he would never have been able to lie still for twenty minutes in a terrifying room with a tunnel, and the second because he has to recover in isolation due to his immunocompromised state). Through it all, though, he maintained quite a bit of fire and spunk. He played more today, and he seemed to feel quite good. So far, as of 11:17 tonight, he has not had another fever.

There is still the chance that this is just a viral infection–maybe his body remembering a cold he once had and reliving it a little (as one of his BMT doctors described), or one of us may be carrying something that our bodies don’t even detect because of our immunity, but his body is reacting. Another doctor suggested that sometimes neutropenic kids react to bacteria in response to things as simple as brushing teeth. It is so hard to say right now. For a day or two, the poor kid had a sore throat, and we thought that was the issue, but it went away too.

Our goal is to somehow keep Caemon fever-free over the next week. If he begins to recover, and his counts start to rise again, we will enter the BMT unit next Sunday or Monday. While the doctors will attempt to get the donor to reschedule her donation, if she cannot, her marrow will be harvested on the originally scheduled date, and it will be cryopreserved (frozen) such that it can be used when we need it. While this isn’t ideal, the doctors have assured us that although freezing can reduce the number of cells, because Caemon is so small and doesn’t actually require all the marrow that is harvested, any reduction in cells should not be an issue in the least. Therefore, while we certainly hope the donor will reschedule, we are confident that this backup plan is a sound one.

It seems, then, that we have our plan in place. Tomorrow, we should find out whether there are any fungi making themselves at home in Caemon. My prediction is no. I think he just likes to throw us curve balls here and there. He’s that kind of a boy. This does give us some time to slowly prepare ourselves for next week’s move to the transplant unit. There are things that have to go home, things that have to come from home to here. We have to wash all of his clothes and seal them up in plastic bags. We have to thoroughly clean his toys and anything else we plan to bring in. We need very specific supplies, which have to be prepared in very specific ways, and now, even though we may not go home, we can get those ready. Sometimes riding out the storm at base camp is the best thing one can do. It is our only option right now as we ready ourselves for this climb up our very own Everest.

For those who have been planning to participate in our Gathering of Light event, please know that this is still on. Now more than ever we need all the light we can bring to Caemon in preparation for the journey ahead.

IMG_8209

inching forward

Yesterday, Jodi and I had a meeting with one of the doctors from the Bone Marrow Transplant (BMT) unit. It was a length, two-hour meeting involving details about all of the medications Caemon will be receiving, including the chemotherapy regimen, as well as any of the complications that can arise from these medications. Some of the complications are immediate, while others are more long-term, but needless to say, it was all a bit overwhelming. In many ways, however, there was a greater sense of relief in knowing what we can expect and knowing that this team has a plan for absolutely every turn of events. They have plans and backup plans, and they know what they do so very well that they are able to avoid many of the complications that were commonplace not long ago. All of this is reassuring given the risky nature of the BMT process.

We learned, too, that the twenty-four-year-old woman is definitely going forward as the donor. She is somewhere in the United States (although it is not uncommon to have international donors), so on the day they harvest her marrow (probably the day before Caemon’s transplant), a courier will fly with the marrow, and bring it to us. I can’t help thinking about what this young woman must be feeling about this, but I hope one day we can meet her and thank her for the most precious gift anyone could give us: saving our son’s life.

Tomorrow, Caemon will go in for another bone marrow biopsy and another test of his spinal fluid. The poor boy will have to go without food the entire day tomorrow, as they have scheduled him for a 4:00 surgery. We have a little lie we tell Caemon on days like this, as it seems the hospital occasionally just runs out of food. We don’t know why it happens or why they are suddenly able to replenish their supplies after Caemon visits the “warm room” (his term for the operating room), but no-food days often result in frequent “calls” to the kitchen to inquire whether the hospital chefs have returned from the grocery store. How long our little ruse will continue to work, I do not know, but at least his parents and care providers don’t have to be the bad guys who keep him from eating.

After tomorrow’s adventures, if his counts come up more, we may have the opportunity to go home for the weekend. There was some talk yesterday that we might try to push his BMT admission back a week, but it appears that the oncologist and the BMT doctors have come to a consensus that next week is still the week. Whether we come in Monday or another day is yet to be determined, but for now, we are sticking to the rough schedule that was laid out for us.

waiting game

We are in about Day 23 of Caemon’s most recent round of chemo. His treatment stopped on Day 8, so for the past two weeks or so we have been waiting for his counts to drop and then climb. They have started to inch up bit by bit. His platelets seem to recover most quickly, so they are on the rise, as are a couple of other counts. However, the cells that everyone is watching now are the neutrophils, and they are taking their time. Our doctor reminded us last week that he didn’t recover until Day 28 last time, so he is right on track.

Why does this matter so much? If Caemon’s counts recover, and if his neutrophils reach a “safe” level, we will get to go home for a few days before we are admitted for transplant. We all need this reset desperately, but our boy particularly needs some time free from tubes and beeps and a hospital bed. This next admission–the big event–is going to require him to be confined to his room for the duration of his stay. There will be no more playroom or wandering the halls to visit the nurses. This will be hard on our boy who loves seeing his surroundings, which is why it is so important that we have a few days of relative freedom.

In just nine short days, Caemon is going to be admitted as a bone marrow transplant patient. His conditioning regiment of chemo will begin, and will begin this process of taking the ultimate step toward saving his life and beating this disease.

nadir

Over a week has passed since I last wrote an update. Time in the hospital follows a very different chronology than the rest of the world. Days and weeks blend together. Weekends come and go without much of any awareness, other than that Caemon has his weekend meds, and there are fewer people needing to check in on him.

Since I last wrote, Caemon has finished his chemotherapy. He is five days out from his last dose, and his counts have fallen as expected. Today, his neutrophils are at zero, which is called “nadir.” Now we wait for the counts to begin to recover. We are hoping for a chance to go home before transplant. It may just be a couple of days, but any sort of reset will be nice. Caemon handled this round of chemo very well. He had a few fevers, but nothing long-term, and he had a bit of a rash from one of the drugs, but that too was manageable. It has been overwhelmingly clear what a difference it makes for him to undergo these treatments with less disease in his body. The fact that it seems to continue to work is heartening.

At this point, our biggest goals are to keep Caemon free of infection and to keep his spirits up. Our nurses are doing a wonderful job of making sure he has a certain number of hours each day when he is free of his IV pole. He looks forward to being hep-locked for his trips to private neutropenic play time in the hospital’s playroom. This playtime offers such great reprieve from the tiny hospital room, and it lets him branch out and explore a bit more, especially without an awkward IV pole attached to him. While initially he only wanted to play with medical supplies there, he now has branched out to playing with cars, crafting with glue and other fun supplies, and even painting.

He also enjoys a daily visit to a patio near the playroom–sort of a rooftop deck in the middle of a couple of wings of the hospital. It’s nice that he can see the sky, breathe a little fresh air, and remember what it feels like simply to be outdoors. He never stays for long, but I know he finds it refreshing.

We all particularly enjoy having Caemon free of his tubes because it increases snuggle time, and our boy is very fond of this. Often in the evening, before he has to be hooked back up, we’ll curl up in the big chair together. These are sweet moments that feel just a little more normal than hospital bed cuddles. So much of what we do here is driven by our desire to make him comfortable, to provide him with a sense of normalcy, and for the most part, I think we have achieved a sense of home here in the hospital–as much of a sense of home as we’re all comfortable with anyway.

Right now, though, we’re missing a very important part of that home equation, and that is Jodi. She has come down with a cold, and she has to stay away until she is no longer symptomatic. We all feel a little out of sorts without one of our little trio here, and although time does have a way of slipping by here in the hospital, my hunch is this is going to be a very long week.

I will write more when time allows. Meanwhile, take a look at that smile. He’s still dreamy, bald head and all.

 

 

a match

Today, we finally met Caemon’s bone marrow doctor. He stopped by to meet Caemon and to bring us a bit of news. We have a donor, one with whom he is very pleased, and she is being “activated” (this means she is being called to her local center for testing and screening to determine her continued eligibility and availability). He told me she is a twenty-three-year-old woman, no kids, and he has high hopes that she is going to be an exceptional donor for Caemon. You may remember when I spoke about having twelve total markers on which a donor can be a match. This woman is an 11 out of 12, and for Caemon, this is perfect because in his case, we don’t want a 12 of 12, for the risk of recurrence is too great then. They have found our donor.

Imagining an actual human being, a young woman who, if she is willing and able to go through this, is going to save our son’s life is humbling and beautiful. I learned her blood type. She is B-. Caemon is O+, but after transplant, his blood type will change to B-. It just so happens that B- is Jodi’s blood type. He will have the same kind of blood as his Mama. That, for some reason, resonates beautifully with me.

On top of having a person, we also have a date. December 3rd, we will be admitted to the bone marrow transplant (BMT) unit. The doctor predicts the transplant will happen on 12/12/12. Knowing all of this will happen in a month has me both terrified and hopeful. The doctors are all so pleased with Caemon’s response to his chemo that they seem to have a good deal of confidence about going forward. At the same time, this is not without a fair share of risk. It’s not without a difficult road of conditioning chemo, which will essentially destroy all of Caemon’s bone marrow and blood cells to make him receptive to the new marrow. He will be incredibly vulnerable to infection for quite some time, and that comes along with plenty of worry. However, we know the strength of this team. They are one of the best in the country, and that is no small matter.

We can take comfort, too, in the fact that we will have the same nurses there as we have had here. It’s lovely to know we will be well cared for as a family, that Caemon will have familiar faces keeping him smiling during those long weeks of isolation.

During his visit, the doctor asked Caemon when his birthdate was. When he learned this, he shared with us that Caemon’s is just a few days after his own. He told Caemon we would all need to have a big party for his fourth, gave me a broad grin, and made his way out. Yes, a big party will certainly be in order.

Even though we have had this glimpse into our very near future, we’re also living very much in the present with Caemon’s current round of chemo. It won’t be quite as long–eight days instead of ten–but he is reacting more quickly to it. He has had a couple of fevers, is developing his rash in response to Ara-C (cytarabine), and his counts are dropping quickly. Today, he needed a blood transfusion, and soon he will be neutropenic again. We are told his counts will take a bit longer to recover this time because his bone marrow is tired, but they are hoping to send us home again before we’re admitted for bone marrow. I just can’t believe that we’re really this close. Then again, I can’t believe it’s November either.