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.

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.)