relapse

We were called into a conference room today to meet with Caemon’s oncologist and the attending bone marrow physician. The room was full of coordinators and social workers, doctors, and a beloved nurse. We knew from the moment the resident came in to tell us that we were having a conference room meeting that things weren’t looking good, and by the way everyone looked so sorrowfully at us, the way everyone hugged us a bit longer, both of us were fairly terrified.

When we all sat down, the doctors placed a slip of paper in front of us, which showed the percentage of cells present belonging to the donor. It read just 37%. At this point, they wanted to see 95-100% of the donor’s cells. We also learned very quickly that there are a number of blasts–the immature cells, which this time are likely to be leukemia.

Caemon is very likely suffering a relapse of his leukemia. His transplant has not cured him; in fact, his donor cells and his cells are living side by side. There is no easy way through this.

His doctors shared with us the few plans they have remaining. First, they will attempt to trigger something called graft versus leukemia. This is when the donor cells attack the leukemia cells as foreign bodies and effectively kill off any remaining leukemia. They will start him on a chemo-type drug that is very rarely used but can be effective for JMML. Finally, they will give him some additional donor cells. Should they be able to get Caemon healthy enough, they may also try for a spleenectomy. These are what Caemon’s oncologist called her last cards. She told us as tears welled in her eyes that with our permission, she would like to play them.

I never imagined we would be talking relapse a month out of transplant, but the fact is our boy is very sick, and we are willing to take every measure we can to save his life.

We hope you will send him all the prayers and healing energy and positive thoughts you can. We need everything we can muster to save our boy.

be here now

I don’t have a lot to share tonight other than that we’re pretty scared and trying not to be. Words like “relapse” have entered the picture, and while there is no solid evidence of this so far, there are lab techs coming in on the weekend to try to complete in two days what normally takes much longer because they want to make sure Caemon’s JMML mutation is gone. They want to make sure the immature cells his marrow is producing aren’t leukemic. The doctors are guessing because no one can quite figure out what is going on with our sweet boy.

Today, Caemon weighed 17 kilos–approximately 37 pounds. He’s usually closer to 14 kilos. He is retaining so much fluid that he is hardly recognizable. He is uncomfortable, much like a very pregnant woman might be. Still, he felt better more often today than yesterday. He played in the morning and this evening, he played with playdough for well over an hour. He even recreated some of the foods he likes to make at home. Unfortunately, he’s not actually eating more than a bite or two of food each day.

He also can’t hold onto platelets. His body seems to have developed an immune response to them in that it may be attacking any new platelets that enter. The blood banks are working to find specially matched platelets in hopes that he can get a boost until his body starts making them. His neutrophils dropped today too, down below 500. He is neutropenic again. This can be the sign of an infection. This is honestly what we’re hoping for.

There are possibilities of viruses lurking, of other strange phenomena, and we’re clinging to that, but it’s so hard to know what we are facing. Tomorrow we’re hoping for results on his bone marrow, to learn how much of the donor’s marrow has engrafted. They can’t take any steps until we learn more about that. We’re just trying to live in each moment, to soak up every bit of him, to give him every ounce of strength we’ve got.

minute by minute, hour by hour

Today has been one of the hardest days we have had in some time. Caemon is retaining a huge amount of fluid, so much that he doesn’t look at all like himself. No one knows why this is happening, only that it is, and he is incredibly uncomfortable.

Today, he also had his bone marrow biopsy, the first since his transplant. We won’t know any conclusive results for awhile, although we may have some information about some immature cells tomorrow. Those immature cells are called blasts. They are the ones that can also be leukemia cells. However, Caemon is also being given a medication sporadically that tells the bone marrow to spit out whatever it has produced, and this means, it spits out both complete cells and immature cells. Therefore, this is not necessarily a concern. Not necessarily.

Tonight, both his oncologist and the attending physician in the bone marrow unit came by with two nurse practitioners. Jodi was still on her way back from school, and it was a terrifying moment as they stood and brainstormed what might be causing this downturn. They volunteered all kinds of scary scenarios, but none of them necessarily seemed right. It just boils down to the fact that no one knows what is going on other than that Caemon’s body is holding fluid, and it’s eating up platelets as though they are a foreign body. They have a number of supportive measures they’re pursuing, but for now, we have to just watch and wait and hope that somehow he resolves this. For some reason, I think it will, for as easy as it is to go down some pretty scary paths, the truth is that his body is still recovering and that a lot can be happening.

Our social worker friend and our nurse today both reminded me over and over to take things minute by minute, hour by hour because we cannot do much else right now. We just have to watch over our poor swollen little crocodile, make sure he gets everything he needs, and hope hope hope that we move past this soon.

bracing for bumps

On our last trip home, before we entered the BMT unit, Caemon discovered he doesn’t like riding over railroad tracks. I made the mistake of taking him to see the lights downtown where we live, and to get there, we had to cross a couple of sets of railroad tracks. They upset him terribly–in part because he didn’t like the feeling of them and in part because they scared him; they were unexpected. He has made me promise not to go over bumps, and he has talked with me about different types of bumps. He is worried that I walk over railroad tracks when I cross the street to the family guest house. Any time I go home, he asks if I have driven over the railroad tracks. Those bumps clearly left an impression.

I can honestly say that I’m not a big fan of bumps either, but as I came home yesterday from preparing the house for Caemon’s homecoming, I found myself going over one. A blood culture of Caemon’s came back positive for staph infection. He had spiked a fever. He was retaining fluid, not eating, and was having a fair amount of abdominal pain. There was worry of VOD rearing its head again. Something was eating up his platelets. We have what I would consider to be a genuinely annoying bump right now–one that is a little scary, a little bothersome, and something we all would rather have avoided.

Today, Caemon spent a lot of the day battling a very painful diaper rash and doing everything he could to keep anything inside his body from touching the diaper rash. It seems his will power works both ways, so once again he is causing himself incredible discomfort all to avoid the pain of a bodily function.

Today he showed some progress in a number of areas, and the blood cultures taken from his central line and from his veins (they had to poke the poor guy) haven’t shown any sign of further infection, so we are hoping this resolves as just a contaminated lab sample. Still, it’s such a mystery what is happening in his body, and we’re hoping to find some answers soon.

Wednesday, we have Caemon’s first post-transplant bone marrow biopsy. He will have to go under general anesthesia, and we’ll learn a bit about what is happening in his marrow, how much of the marrow is his donor’s, and whether the mutation for JMML is still present. While we are hoping for the absolute best, it’s hard not to take a little walk down those darker paths. I don’t want any such news, and the chances are good we won’t be getting bad news. My hope is that we’re going to hear that his marrow continues to be sluggish, that it’s taking its time to set up house, but that it’s the donor’s and it’s JMML-free.

Tonight, Caemon started to look a bit like himself again after losing some of the fluid he had retained. All day, his face had been so puffed up that his eyes were little slits, but his eyes started to emerge again, the rest of his body started to shrink a bit too, and as he felt a little better, he requested food and ate almost half of a baked potato. He even giggled. It was a better night, and I think tomorrow will be an improvement as well because this is indeed one of those annoying, surprising bumps, something that slows us down a bit, keeps us from cruising along at our preferred speed, and keeps us on high alert for any other bumps in our paths. We’re going to have these now, and we’ll have them when we go back home. The trick is in remembering that a bump does not signal the end of a journey. It typically doesn’t even throw one off course. It’s a nuisance yes, something we’d rather avoid, but we’re still moving full speed ahead toward our destination: a life outside of this hospital with a vibrant, healthy little boy. I just need to quiet that inner child who keeps tugging at my sleeve and asking, “Are we there yet?”

we would like a flashlight now

I suppose any time I write about Caemon’s current condition, I should remember that there are varying degrees of sick and similar varying degrees of darkness. Right about now, we could stand any number of devices that might keep the light coming.

For the past two nights, Jodi and I have taken turns not getting sleep. Last night was my turn, so tonight I am ordered to sleep. Caemon has taken a bit of a downturn in a few different ways. The issue with his mucositis is more challenging as it continues to get more raw and angry. His throat has taken the worst of it, and the poor guy has a good deal of difficulty sleeping for any amount of time before the saliva he keeps saving starts to make him cough. He is not getting much uninterrupted sleep at all.

More challenging, now, are the fevers that keep finding him. Yesterday, he was sent for a CT scan to try to identify any fungal infections that might be lurking, but because he cannot be sedated in his current condition, we found ourselves trying to convince a three-year-old who feels miserable to hold completely still with his arms up over his head while being pushed through a tube with scary red lights for a good fifteen to twenty minutes. As you may have guessed, it didn’t go so well, despite our attempts at making it the most interesting thing in the world (and it was interesting until he had to be in it). We called it off. The fevers are persisting, though, and while his blood cultures aren’t growing anything, something is clearly going on. Caemon is now on broad-spectrum antibiotics and antifungals and may soon be placed on a stronger antiviral. If this seems like a lot, it is, and it’s actually only scratching the surface of what is being pumped into our boy.

The latest medication being hooked up to Caemon’s pumps is one meant to suppress VOD (venal-occlusive disease), the liver problem I mentioned previously. Unfortunately, Caemon’s bilirubin levels have continued to climb, he’s gaining weight somewhat rapidly due to fluid retention, and his liver, we learned today, has grown a bit. While this was hard to accept today, it is clear when looking at his jaundiced skin and eyes that his liver is not functioning properly. I won’t lie; this makes me very nervous, but the fact that his team is looking so vigilantly for any sign of issues of this nature tells me that we are in good hands and that if this is VOD, they have caught it in its very early stages and should be able to keep it from progressing dangerously.

Jodi and I have been very much on edge through all of this because there is so little we can do but hold our boy and give him our love and comfort. I know that giving that is significant, but it is hard not to feel helpless in these moments.

For the past three days, we have had a very special nurse friend with us (as Caemon’s nurse), which has been such a blessing. She has held all our hands through these past few days, helping keep us from falling. She reminded us today something that more than one nurse has said:  Kids who sail through transplant easily are the children they worry most about. We should see complications going through transplant because we are putting our child’s body through so many processes bodies are just not meant to see. One certainly doesn’t expect to climb Everest without some scrapes, maybe even some frostbite or windburn or even broken bones along the way. Perilous journeys are fraught with risks and stumbles and even the occasional fall, but we take them because they are worth it in the end. We just have to keep remembering that seeing our boy beyond these double doors, outside of this hospital, running around free of tubes and machines and endless medications is worth every sleepless night and every moment of worry.

So please, keep holding those flashlights and lanterns and torches. We need them to see the rocks in our path, to keep us from stumbling on this most arduous part of the climb.

the monastic life

It’s hard not to notice that we haven’t written about the holidays at all, but it also sort of goes without saying that the holidays don’t quite feel like the holidays when life is spent in the hospital. While Christmas was filled with more generosity than I ever could have imagined, with copious gifts, special decorations, and even carolers, the day was actually a pretty rough day for poor Caemon and thusly for us as well.

Now that New Year’s Eve is upon us, I find myself once again far from a celebratory space and honestly more bewildered that it isn’t still August 19th, that somehow the world has kept spinning for 134 days when in my mind, everything stopped back in August. I do warm to the idea of new hope in the new year, new cells in the new year, no cancer in the new year. These are bright and pleasant thoughts, but they can seem fairly out of place when my heart is forever in August. Regardless of where my mind or heart may be, a new year dawns tomorrow, and I hope that with it comes all that a fresh start should.

Perhaps a fresh start begins with quiet.

For the past few days, but for the beeps and alarms, our hospital room has been very still. It seems our little monk has decided to take a vow of silence. The spit-holding that I mentioned a few days ago has reached fairly epic proportions, and I am reminded of gurus and monks who undertake extreme physical challenges to gain higher enlightenment. While I wouldn’t go so far as to say that Caemon is a young Lama, he is exhibiting signs that the monastic life could suit him. Some exceptional nurses have tried every tool at their disposal to help Caemon relieve himself of his mouthful of saliva. He has gladly helped suction saline “saliva” from the mouth of a baby doll; he has become intimate friends with a suction regulator pump (which he cuddles, diapers, and puts to bed); however, he has not allowed anyone to aid him in the removal of the contents of his mouth. Because it is impossible to speak while enduring such an act of asceticism, Caemon has opted out of spoken language. He speaks with his eyes, occasionally motions to something he needs, but will not risk opening his mouth. We have missed him so much these past few days, but he has indeed withdrawn into his cocoon to get through these most difficult times. While it has been frustrating for those of us around him to see Caemon opting for a path of such discomfort, I cannot help but admire his resolve. This child is strong in more ways than I ever imagined.

Fortunately, with lessened pain, the ability to swallow comes easier, so Caemon’s morphine levels have been increased again, and it finally feels as though we are getting on top of this. Yesterday, he began to attempt to speak again, even agreed to swallowing a little here and there to make it a bit easier to understand him. Our little monk is finally emerging from the quiet.

The last few days have continued to be challenging with fevers, still some worry about the liver, and  persistently low platelets. Most days, Caemon sleeps a great deal, and we find ourselves missing him so very much. Yesterday was one of those days, but by evening, after Caemon had had a long nap, we started to see some signs of our boy’s return. He spoke a bit more, cooperated as much as he could with a bath, and eventually came to sit on my lap in the big chair by the window while his linens were changed. We prolonged this snuggle time as he tried to tell me a few things. It was difficult for him, but he wanted to engage. I asked him, “Caemon, do you know you’re going to start feeling better soon?”

He smiled, nodded, and said, “Uh huh. I will!”

“Do you know that as you feel better, you’re going to start to eat again too, maybe even have a milkshake?”

He bounced on my lap, again repeating, “Uh huh!”

I told him his seeds were growing, that he would soon feel like himself again, and his energy became so bright and buoyant. He knows that he is on the path to recovery, and even in the midst of a fever, he feels precisely where he is in this journey. I can’t tell you how much hope that gave me. Caemon knows that his body is healing. I am not sure he has always known this. He has been miserable, even afraid at times, but he doesn’t seem to be in that space anymore. One wonders if this trial he put himself through helped him find some answers. Maybe we are raising a little monk.

Tomorrow is the first day of a new year. Instead of some empty promises to exercise more and eat healthier foods (although we’ll welcome the opportunities!), I think our family will resolve to live, to thrive, to come through this challenge of all challenges grateful for every day we see through the eyes of our most enlightened little boy.

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a boy’s doula

In the spring and summer leading up to Caemon’s diagnosis, I was training to become a birth doula.* It was a brand new path for me, far from my former life in academia, yet so close to my heart, and in the weeks leading up to that awful day in August, I had put together my doula business website, printed and distributed business cards, and had begun volunteering with a doula service for our local community clinic. I was so very ready to help women through the challenges of labor and to pursue this new path for myself.

Needless to say, when Caemon’s diagnosis came, I shelved all of that. Instead of spending time in hospital labor and delivery rooms, I would be spending my days in the pediatric oncology unit. My heart sunk when, during Caemon’s first night of chemotherapy, I received my first call from a mom in labor, and it sunk again and again when I would see laboring women making their way up to the birthing center here at Caemon’s hospital.

On several different occasions when people here learned I was a doula, they commented that while I might have to put the career on hold, I would certainly be putting some of my skills to use here. I wasn’t sure I understood. Yes, there is a certain amount of patience one learns, and a certain ability to ask questions, even a bit of knowledge of anatomy and medical procedures, but more often than not, I didn’t see it. I suppose I hadn’t gotten far enough into this journey yet because now–today–I understand.

This morning when I arrived at the hospital after my turn to stay at the family guest house, I walked in to find Caemon napping. Jodi told me he had been in a fair amount of pain earlier, so he had been given a bolus of morphine and had gone to sleep. Moments later, Caemon began to stir, and as he did, he began clutching his belly, his mouth, his throat, and screaming. He writhed around until I picked him up, but he was in horrible pain. Our nurse was ready to get him more pain medication, and she grabbed the doctors who were on their way to do rounds with us anyway. As they were here discussing our options, Caemon was out of his mind in pain. His eyes were darting around the room, and he cried and cried, standing up, lying across me, lying on the bed–doing anything he could to find a way to feel better. He was terrified. The doctor started suggesting we give him a drug to calm him down, that his pain may be worsened by the fear and anxiety he was experiencing. Suddenly a switch flipped in my brain from mommy to doula, as I worked to capture Caemon’s attention, ground him by getting him to focus on me and my hands, getting him to breathe easier. We did this as he was receiving another bolus of medication. He began to relax a little into the bed as he stared into my eyes, and soon, very soon, he was more comfortable. What Caemon needed in that moment was not another drug coursing through his body. He needed control and to know he could make it through that moment, as painful as it was.

As Caemon slept much of the day away, I sat here realizing that I  was using my doula training, and I was so sad that to have to put it to use here. But what it really boils down to is that I have become my son’s doula, which feels like such an odd idea, yet somehow it fits. While we have put his life in the hands of medicine, we don’t have to forget what the mind–even the three-year-old mind–is capable of doing to handle scary moments of pain, so long as one has a little help. It turns out that I am indeed going to need to pull from my training, that it is relevant here.

I have assigned so many different metaphors to my son’s experience at this point, and maybe that is because this takes on innumerable forms and feelings that are so foreign to us that we tend to grasp at anything that will make them more familiar. We came into this transplant thinking of it as a transformation, as a metamorphosis, and, yes, as a rebirth. Of course this is appropriate. He is going through a painful, challenging journey, and at the end of that journey is life.

For our small altar space in Caemon’s room, I brought a carving of Ixchel, the Mayan goddess of midwifery and medicine. Looking at her tonight, I am no longer saddened that I had to take a path away from my doula work because I know that the heart that brought me to that work is right where it needs to be, right here with my boy. Today, when what I really wanted to do was sob and sob because my baby was in pain, I could finally do something to help. Yes, I am indeed my son’s doula, and I am proud, proud, proud to be of service.

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*The word “doula” comes from ancient Greek and means “a woman who serves.” Now it is used to refer to a trained professional who provides support to a woman in labor. (Visit DONA International for more information.)