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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5 thoughts on “so much light

  1. Everyday I light a candle in my heart and carry it around thinking about Caemon. I will continue to do this until he is home a healthy little boy. I am so thankful for everyone in his hospital team. The pictures were just beautiful wish I knew how to upload a picture and send it to you. Just know even though we have never met, my heart is with your family.. ((((hugs))))

  2. If love, competence and courage mean anything, this little boy will be well and his wonderful family, both nuclear and extended will cry the happy tears that will make up for the tears of pain and terror that we have known.

  3. As I look at this slide show, I am so filled with love and comfort. Thank you for putting it all together, Timaree. We are blessed.

  4. You are all brave Lil’ Souls, on a journey together, where no one knows from moment to moment where the next step will take you. Amazingly brave! You share a beautiful heart of gratitude, a light shining brightly, in the dark shadows of disease. Blessings to you and ALL that pertains to all of you that are on this journey together…<3

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