so much light

Yesterday was the day on which we were scheduled to enter the Bone Marrow Transplant unit. While we had experienced a fair amount of disappointment in not being able to move forward yet, our little family gathered in the morning to have a peaceful day together, feeling all the loving energy coming our way from the Gathering of Light. Jodi made us biscuits, and we shared a lovely breakfast together. We were completely unaware that we would soon be rattled to our cores.

Caemon awoke in the morning not quite feeling himself, and he fell asleep for a mid-morning nap around 9:00. A little later, his nurse came to set up a new IV medication meant to tackle any dangerous fungal infections that may have taken up residence in his little body. Jodi asked what the potential side effects were, and the nurse commented that while there can be side effects, this particular variety rarely saw any reactions. I remember thinking, Oh, don’t say that. 

A few minutes later, Caemon abruptly woke from his nap, disoriented and crying. Jodi was attempting to hold him, and as I came over to the bed, he looked very strange. His face started to puff up, and as he cried, his whole body was tense, and even his head seemed to swell. We called the nurse, and Jodi ran out to the nurses’ station to make sure she got our call. Immediately, Caemon’s nurse entered the room, and many other nurses followed. Before we knew it, someone handed a syringe of Benadryl to the nurse, while another brought backup steroids just in case Caemon needed more help. They were hooking Caemon up to monitors, giving him oxygen (in fact, he was holding it for himself). One of Caemon’s doctors and his nurse practitioner came in too, and the room was buzzing with activity–all of these brilliant people working together both to make sure Caemon was safe and to reassure Jodi and I that he would be fine.

In the space of just a few minutes, the swelling began to go down, his breathing calmed, he stopped writhing in pain, and he snuggled into may arms. They gave him a dose of morphine for the pain he was having, and he fell asleep in my arms. After a long nap, he woke up feeling good, and while he was clearly not feeling his best the rest of the day, he turned around beautifully. Obviously, he won’t be receiving this medication anymore. Fortunately, he doesn’t need it; his CT scan from two days ago shows no fungal infection.

As terrifying as all of this was, I knew through it all that he would be okay. I was trembling, and Jodi and I were both crying and feeling fairly helpless, but I could see that this team had everything under control.

To know that we are surrounded by such confident, competent, and compassionate practitioners is so comforting. We know our boy is well cared for here. Yesterday, though, we felt the strength and compassion of a huge community that has gathered around our family in this time of crisis. Spiritual communities united to send Caemon love and light and healing. Individuals lit candles in their homes all over the world. There were candles lit at the Santa Rosa BloodSource office and the English Department at Sonoma State University. All day, we sat around watching these photos of candles rolling in, accompanied by beautiful words from friends, family, colleagues, nurses, and hosts of people whom we have never met, whose names we only know from our boy’s website, and we felt utterly supported and cared for. I am so touched that so many people made such a beautiful effort yesterday to care for our family in this way. We are so, so fortunate to have you all blessing our lives, and we will take this light with us as the next days and weeks and months unfold.

Below are the many images our community shared with us.

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an unexpected village

Three months ago yesterday was the day our lives changed forever. I remember the night we came to this hospital. I came in with Caemon on the ambulance, and when we got off of the elevator and turned a corner, I saw a sign reading “Children’s Oncology and Bone Marrow Transplant Unit.” I froze. This wasn’t for us. Even as we made our way to our room, met the on-call oncology fellow, and began to process that our son did, indeed, have leukemia, I couldn’t claim this place or these people. I didn’t know them, and in my terrified mind, they couldn’t possibly know my son if they thought he had cancer.

If I could give myself–that scared mom who couldn’t stop shaking–a bit of comfort, I would say, Look around at the doctors and nurses. Take a good look. These people are going to fall in love with your son.

I imagine at the time that would have provided little comfort. I didn’t want a place like this to be familiar, to know what it was like to live in a children’s hospital or for my son to know hospital life or cancer life at all. In those early stages of learning a child has a life-threatening illness, all one wants to do is flee. Knowing now, though, what a special community we have here, I am actually grateful to be here. Of course I would give anything for my boy to be healthy, but if he has to be sick, I’m glad he’s sick here.

Before Caemon was diagnosed with leukemia, he lived in a fairly small world. He had just embarked on preschool, and we were so looking forward to the opportunity for external help in raising our boy. We had the help of Grandma and Grandpa when they were able to come to us or us to them, but as parents, we were learning we needed to broaden Caemon’s exposure, to find ourselves that proverbial village to help us raise our son. I don’t think we ever imagined we would find it in a hospital, and certainly not under these circumstances, but as the months have unfolded, we find ourselves every day surrounded by people who are not only taking care of our son’s medical needs, but are nurturing him and shaping him as well. It is remarkable to watch.

Just yesterday, his child life specialist came in to spend time with him. She chatted with Caemon, tickled him a bit, got him to think about eating, and as she looked at him, I thought, She loves him. The day prior, when the social worker came to check in with us, she and Caemon immediately began repeating a favorite line from one of his Dr. Seuss books, and they made crazy banging sounds as they did it. They were completely absorbed in their funny antics, this private joke the two of them share, and then they sat down to read a book together as though I wasn’t there. Again I thought, She loves him. And my boy loves these people right back. Knowing this, knowing that other people see what a special boy he is is good salve to a mom whose heart breaks every day knowing what her child is enduring. In the hands of these people, I cannot say he is suffering. In fact, I can say that in many ways, because of their love, he is thriving. 

Daily, the providers who tend to Caemon’s needs take their care so much beyond vitals and medications, and procedures. They bring their hearts here, and when they leave, they take these kids with them. We received a message this week from one of Caemon’s favorite nurses while she was traveling with her family in Ireland because she was thinking of our boy. A patient care assistant brought in Christmas lights after Caemon told her he was afraid of the shadows at night. Another nurse stepped in to help us redefine some boundaries with Caemon’s excitement for medical supplies and in the process taught him how to give back to others. They teach him to be kind to his moms, to be polite, to make decisions, to navigate disappointments. They help him through rough moments, and they celebrate every little victory, from taking his first pill to making it through a scary procedure. And through all of this, Caemon has gained role models: nurturing, gentle, funny, brilliant souls–both male and female–who are the only types of superheroes Caemon knows.

It is hard to believe a place like this can start to feel like home, that the people can feel like family. Three months ago, I never would have imagined that Caemon’s oncologist, one of the leading experts in the world on Caemon’s illness, would be bringing him chocolates from England and working with him on potty training or talking politics with us. I never imagined nurses would come in, even after their shifts were over, to hang out with my boy, or that they would compete to be the one who takes care of him. But this is what we experience here on a daily basis from everyone who works here, from the patient care assistants who take time to make crafts or read with Caemon, to the nurses who involve him in every aspect of his care, to the doctors who have so much pride when they see him taking such interest in medicine. It really is no wonder he wants to emulate these people and do what they do. These people are made of special stuff–the sort of ingredients that make angels and fairy godmothers and Mary Poppins and Albert Einstein who they are. They are equal parts brilliant and compassionate, creative and  competent, and somehow, amid all of this bad luck, we get these people to help us raise our son.

Today, we’re missing celebrating Thanksgiving with our family, and while it is hard that we won’t be seeing Caemon run around with his cousins, or that we won’t be sitting in the warmth of the people who know us and love us best, we are not without family here. Here, behind that Children’s Oncology sign, there is a whole lot of love, and for that we are very, very fortunate.

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