in my mind, we ran away

A year ago today, we woke up in our home as a family one last time. We got into the car together one last time, and we drove to UCSF with Caemon one last time. He was being admitted to the Bone Marrow Transplant Service and would begin his chemo conditioning regimen at 9pm. Before that, he had hours of tests and a fairly miserable scrub-down with a soap containing chlorhexidine, meant to remove as many bugs and outside germs as possible from his skin. His room from then on would be a clean room, one for which we would have to scrub in any time we left the hospital and returned.

Caemon was so cooperative that day with so many things. He brought his medical supply tacklebox, having left his medical supplies at home (even these had to be fresh). He had a chest x-ray and sat so very still, and while that dreadful bath had him protesting wildly, he happily changed into comfy clothes and took a nap with Jodi on the bed while I decorated his new room with trees.

But I can tell you that in my mind that morning, I wasn’t driving him to UCSF. When I woke up early, and he was still sleeping, I imagined staying home with him forever. I dreaded what was next, knowing the transplant itself could kill him. Every cell in my body wanted to hold tight to my little family snuggled up in our big bed and just never go. I wanted to see his hair grow back, watch him turn the lights on and off on our Christmas tree, dance with him free of tubes and hospital beds and worries about platelets. We had spent the last three days baking his favorite pumpkin muffins, going out at night to see Christmas lights on houses (in fact, one we visited all three nights we were home), lighting fires in our little pellet stove, and simply being a family with our own agenda, our own rules, our own space. If Caemon wanted to eat nothing but tuna sandwiches for an entire day, that was what he had. If we wanted to stay in our pajamas all day long, we did. We made messes, cleaned them up, hugged and danced and snuggled and played and read. It was bliss, and none of us wanted to leave it. In those moments, with our son the closest to leukemia-free he had been in who knows how long, it almost seemed possible to just forget about the hospital and just take our lives back.

But it wouldn’t be possible without a transplant. We all knew that. We all knew the leukemia would return with a vengeance in no time if we didn’t go through with it, but the instinct to go anywhere but that hospital was strong in me that day, and I fought it over and over again as we packaged all of Caemon’s clothes in giant ziplock bags, placed his toys in sealed plastic tubs, packed up our own suitcases full of hospital mom clothes, and drove to San Francisco.

That night, after the tests and the bath and after “Sad-Sad Boingy Tube” got hooked back up to the IV pole, and after Caemon and Mama had a nap, and I decorated the room with trees and lights and as much magic as I could muster, we sat together in his room, and we gave Caemon what he affectionately called his special BMT present: a little Christmas carousel that lit up and played music, something he had admired countless times the year before both in a store and in a book we had.  Caemon loved carousels, so to have one of his one was pretty fabulous. He snuggled up by himself in his bed, turned it on, and lost himself in it. For nearly an hour, my son gazed at the lights and mirrors, listened to the music, and watched the little animals spin around and around. When the little bears riding one of the horses would come around, he would kiss his fingers and gently touch them. He did this over and over, speaking softly to the bears. He was a little boy, mesmerized by a holiday toy, and I found myself transfixed by the beauty of the moment, yet saddened too, for beyond the innocent smile and wonder, there was something else in my son’s eyes–a sort of resolve that came with being back in the hospital, hooked back up to tubes, submitting to treatments. To see a sort of knowing wash over him, to see him visibly coming to terms with leaving home and living in the hospital again broke my heart.

Thinking back to all of that now is so hard because I know what he was about to endure, and I wonder if he was anxious about it. I wonder if he had any idea what was to come. I don’t know. I know that it was scary for all of us and that we maintained more hope than I ever imagined could be mustered, that we did everything we possibly could to save our son. A year ago today began the greatest fight of our lives, and while I know I wouldn’t have changed anything, I still sometimes wish we could have just stayed home, lit a fire, and snuggled up on the sofa with a big stack of books and our beautiful, beautiful boy.

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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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it’s always darkest before the dawn

We listen to a lot of music in our hospital room. It calms us all, helps us set a more positive mood, and it makes the place feel a lot less institutional.  Yesterday, we were listening to some internet radio, and a Florence and the Machine song, “Shake It Out,” came on. I hadn’t been paying much attention to it, but suddenly the refrain–an old proverb–caught me: “It’s always darkest before the dawn.” For the past two days, I have found myself repeating this over and over in my head.

Surely dawn is on its way soon because the last two days have been pretty dark as we struggle through these most challenging times post-transplant. We are working hard to find a level of morphine that will keep Caemon’s pain at bay without sedating him too much, and we’re also facing the challenges of complications, which are to be expected. Caemon’s mucositis is just horrible. He has sores all over his mouth, in his throat, in his stomach, and all down his digestive tract. When his pain isn’t managed enough, he cries out, writhes around, does anything he can to find comfort. We talk him through it, work to distract him, and, of course, get him more pain medication as we can, but this is excruciating for all of us to see him constantly fighting pain.

Today, we reached a new low with this, in part as a result of Caemon’s slightly stubborn nature. Because he has discovered that it hurts so much to swallow, he has opted not to swallow anymore. We were told by some of the nurses that he might start drooling, which I thought would be fine, knowing it would be temporary and a good alternative to pain; however, Caemon refuses to drool too. He doesn’t yet know how to spit and won’t try. To make a very long story about my son’s oral habits short, Caemon is now sitting around all day with a mouthful of saliva. We tried to get him used to the suction device, even presenting it as a “teeny-tiny mouth vacuum,” but he wasn’t impressed. Therefore, the entire day he has been tight-lipped and unable to speak lest he leak a little or accidentally swallow. If you’re at all amused, it’s okay because frankly the boy’s stubbornness is quite cute when it isn’t causing him incredible discomfort. That said, I miss hearing him talk and laugh, and I just wish he would let us help him. We can only hope that his frustration with the situation will outweigh his stubbornness before long.

Our biggest concern today, however, revolved around Caemon exhibiting some signs of VOD (veno-occlusive disease), which occurs when some of the blood vessels in the liver are blocked such that blood cannot filter through the liver properly. It can be fairly mild or incredibly dangerous, so it is certainly something for which one needs to be frequently monitored. So far, most of Caemon’s liver levels have been pretty normal, but one level–his bilirubin–did rise both yesterday and today, and along with a slight jump in his weight, his doctors were concerned we might be headed into VOD territory. After an ultrasound for Caemon and a hefty dose of worrying and floor-pacing for me and Jodi, we finally learned that his liver is doing just what it should be doing, and while we will continue to watch every aspect of its function, for now, it is okay, Caemon is okay, and we are breathing again.

We were told so many times before we entered this world of BMT that it is very hard–hard on the patient and particularly hard on the parents. We were told we wouldn’t get much sleep, that there would be many ups and downs, that it would all be very challenging. The experience is certainly living up to those expectations. We are all tired, and Jodi and I miss our boy and his laughter and funny quips so much. We have to endure it all to make it to the other side of this though. The best we can do is hold on, and hope that before we know it, the sun will start inching up over the mountains.

day zero update

I want to write a more detailed post about this tomorrow, but I know there are many of you wanting to know how Caemon is doing. The transplant today went very well without any complications. While  he didn’t have complications from the infusion, he is now struggling quite a bit from the mucositis* that seems to be coming on strong in his belly and throat. Therefore, he has been placed on a continuous morphine drip today. He has also been started on IV nutrition, as his interest in food and his ability to eat has all but disappeared for now. Regardless of these factors, he is still doing well and even played a little today. Still, it seems our little caterpillar may be entering his cocoon. That’s okay. It’s what he needs to do.

We are so grateful to those special people who were with us today and to all of you for holding us in your thoughts and prayers all day long. I will bring you the story of today’s events along with photos sometime tomorrow. In the meantime, we all need sleep.

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*Mucositis is one of the more difficult effects of chemotherapy resulting in the breakdown of mucous membrane in the mouth and all throughout the digestive tract. It is characterized by extremely painful ulcers and inflammation. 

wishing on eyelashes

Image courtesy of In Her Image Photography

People have always admired Caemon’s eyelashes. They are impossibly long and full and frame his beautiful eyes so perfectly. A few days ago, when we were discussing just whether or not he would lose his lashes and brows this time with one of the nurses, she described his lashes as “spindly.” I was a little surprised, and then I looked and noticed that they have, in fact, become rather sparse. There was no need to question. The lashes were already falling out.

Today, when Caemon awoke from his nap, I saw four or five lashes scattered over his face. As he laid there rubbing his eyes, off came a few more. Jodi and I took turns picking them up and blowing them off of our hands as we wished what mothers wish when their children are stuck in hospital beds.

We are wrapping up Day -3. For a couple of days now, Caemon has been receiving new chemotherapy drugs along with something called ATG (thymoglobulin). It is a substance that acts as an immunosuppressant, which will keep Caemon’s body from rejecting the donor marrow. As you can imagine, it is quite rough on the body; it is also highly likely to cause allergic reactions. Caemon has to be premedicated with antihistimines, steroids, and Tylenol to minimize these reactions, but just in case, just outside his door is an emergency stash of things like epinephrine, extra hydrocortisone, more Benadryl. Seeing these any time we enter or exit his room reminds us just how precariously we are living now. At the same time, we know these nurses and doctors have got this under control.

Our poor boy has been on a couple of different steroids for the past two days, and they make life so hard for him, causing him to be crabby and disagreeable for the majority of the day.Even so, he has managed to seem mostly himself until today. Today he awoke wanting to do little more than watch videos, and this was true most of the day. We pulled out various toys, but he felt lousy and wanted the comfort of the same five Berenstain Bears episodes over and over again. As much as Jodi and I used to limit his screen time, we are finding it helpful here to let him escape his reality a little and get through the harder days with more ease.

The day culminated in Caemon feeling worse and worse and finally spiking a fever. Although the fever has gone down on its own, and the ATG commonly causes kids to spike fevers, the standard protocol here is to draw blood cultures to make sure there are no infections lurking, and then they’ll start an antibiotic as well. We have been down this road before, so while it is upsetting to see our son feeling so awful, we also know this is one of the rites of passage on his way to wellness. This process is supposed to have its complications. The body is supposed to dislike losing its immune system and healthy functioning cells. This doesn’t take all the worry away, but it can be reassuring to know that Caemon’s body is responding as it should.

Caemon’s transplant is Thursday. It is hard to believe just how quickly this day has come, and we find ourselves feeling both hopeful and nervous about it. This is already a rough road, and we know it only gets harder from here. Still, we have plenty of distractions to keep us from sitting in too much anxiety. Today it was a visit from Santa and making eyelash wishes. Given that this is the season for miracles, we will welcome them any way we can.

Our first Santa sighting through Caemon's window.
Our first Santa sighting through Caemon’s window.
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We were even able to open the door and have a moment with Santa.

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Day -10

 

Leaving for BMT (with his medical kit, of course).
Leaving for BMT (with his medical kit, of course).

We have made our return to the hospital, and this time, we managed to be gone until the morning we were due back, which is not the usual for us! It was hard to return after such a short and lovely time at home, but once here, we got down to the business of BMT.

We have been talking about Caemon about life beyond the double doors quite a bit lately. You see, the children’s oncology unit is a pair of hallways that both end at a set of double doors. Beyond the set of double doors is the bone marrow transplant unit. Caemon has known about the double doors for some time but had never seen behind them until just before we left when he had his first glimpse. He knew there were things to look forward to here, so once he moved past the difficulty of leaving home again, he began to anticipate his new experience behind the double doors. He knows it is special here, and so far, we have worked to make it even more so by putting up special decorations (many lights and even large tree decals on the walls to give the feel of a forest), giving him some special gifts, and helping him become acquainted with the new rules here (moms can’t eat in the room, a bath must be had every day, no more disconnecting from the IV pole or leaving the room, etc.). I would like to share more about this when I am less tired, but today has been a series of adjustments for us all, and I imagine we will continue to learn how to live life beyond these double doors.

 

Playing with a special gift.
Playing with a special gift.

Tonight, Caemon is receiving the first of his conditioning chemotherapies. He has already had one dose along with the drug Attivan, which is meant to prevent seizures (one of the side effects of this particular chemotherapy), but which can cause children to either become relaxed and happy or out of their minds and a bit wild. We were fortunate to see the first reaction and not the second tonight, so we are pleased about this. We all need our rest.

Because this is the first day of Caemon’s chemotherapy, or “conditioning,” it is called “Day -10.” We are counting down to Day Zero, which will be the date of transplant. We are told this will be December 20th (on the eve of the Winter Solstice). Beyond the transplant date, we will count days as +1, +2, and so on. Such is the way beyond the double doors. As far as we know, our donor is having her surgery to harvest her bone marrow this week. I don’t know the exact day, but my best guess is that it will be the twelfth. Those cells will then be frozen in anticipation of Caemon’s transplant on the 20th.

So here we go. We’re on our way up the mountain. More to come later.