On the first side of transplant–the days leading up to the big day, we talk about days in negatives (“Day -9”), but now that we are post transplant, each day is numbered as a positive.
Today is Day +2.
Both today and yesterday, we have gone back and forth between talking about Caemon as a caterpillar newly wrapped in his cocoon and a hibernating bear cub. The bear cub comparison may be coming as a result of the continuous loop of Berenstain Bears videos now playing in his room. He finds their stories very comforting, a little funny, and a good escape from how miserable he feels. It is fairly charming to hear him quoting Mama Bear with her slightly antiquated speech, and given that the theme of the video is looking at the bright side of situations, it all seems fairly appropriate, even if it is driving Jodi and I out of our minds a bit.
Caemon is experiencing a fair amount of discomfort. Yesterday, he slept most of the day and was really just a whisper of his normal, impish self. He had a fever last night (and the night before), so he has been placed on more antibiotics. Today, he has had more belly pain from the mucositis and is beginning to develop some mouth pain. I have never experienced something quite so awful as hearing my child cry in the sort of pain that requires morphine. We know this will pass within a couple of weeks, and that they are finding the right balance of medication, but it is so hard to endure for all of us. These are the dark days though. We’re keeping close to Caemon, making sure he has all the comforts he needs, whether that be stories read, music played, videos looped, or simply a lot of snuggles from his moms. The last of these is, of course, the most comforting to us all.
But I want to talk about transplant day before I forget it. Much like a birth, there is so much to remember, so many moments and feelings that can easily get swept away, and I know so many people want to walk through this with us. Here is what I can recall, followed by a slideshow from Day Zero, which I am now affectionately calling “Seed Day.”
Transplant day itself was such a sacred time. Throughout the day, we received calls and texts and messages here and on Facebook reminding us of the support we had. One of our favorite nurses came in on her day off to be with us during the transplant. My brother and our friend Carol came too to lend support to all of us. We all gathered around as 11:00 approached, and Caemon got himself ready. As I mentioned before, he was fully aware of the important nature of the day, and he was excited to get his “seeds.”
When the marrow arrived, it came in a large ice chest of sorts, and it was accompanied by a machine meant to thaw it. These were in the hall outside of Caemon’s room, and I spent a little time photographing the process, standing in the presence of these cells, marveling at how beautiful the color was and how powerful these bags of what appeared to be blood must be.
We had one of our favorite nurses for the day, a woman whom Caemon (all of us, really) has adored since we met her back in September. She has rarely been our nurse, but she has always come to visit Caemon, showing him funny games on her phone, bringing him books, and just generally making him laugh. To know she would be with us was so comforting, and as the process began, we were equally reassured by her intelligence and extreme competence as a nurse.
We played music and lit our flameless candles when the cells were brought in. Two of the BMT doctors came in as the cells were confirmed, the rate of the drip calculated, and the first bag was hung. We had been warned of the unpleasant odor coming from the preservative the cells are in, so throughout the room we placed cotton balls soaked in peppermint oil from the hospital and lavender oil from Carol. As the drip began, the odor was quite powerful, especially as we sat with Caemon on his bed. He didn’t seem to notice and was cheerful and enjoying the company of everyone around. We all enjoyed our time together as first one bag of marrow and then another made their way into Caemon’s body.
Because there can be somewhat of an allergic reaction to the marrow, as there can be with any blood product, Caemon had a few different medications (an antihistamine Tylenol, a steroid) in advance of receiving the marrow to prevent these reactions, but he was fine, except for the pain surfacing from his mucositis. His nurse took his vital signs every few minutes throughout the transfusion, and he tolerated everything so well. This was a relief to all.
An hour or so after everything was over, Caemon was sitting happy in his bed. He reached over, grabbed the nurse call button, and pressed it. I asked him what he was doing, and he told me, “I want to tell the nurses that my seeds are finished.” He did call, and when the charge nurse answered, he told her that his seeds were done. She was appropriately enthusiastic.
Because he had had an eventful day, and because he was also receiving morphine fairly regularly, the boy was quite tired, so he had a lengthy nap following the transplant. As he fell asleep, more guests came, including Caemon’s oncologist, who shared with us that the percentage of Caemon’s specific type of genetic mutation (which led to his leukemia) has gone from 48% to 1%. This was lovely news to hear, for this showed us his disease responds to chemotherapy and that such a small amount remained that it should have been obliterated by this conditioning for the transplant. While we still have a long way to go toward full recovery, this was promising news to hear on this day.
Our next special guests were Grandma and Grandpa, who came and gave Caemon a special transplant gift from the whole family, and while he didn’t feel well, he enjoyed the time with his grandparents. We all did. Being surrounded by so many special people made the day really feel celebratory. And while we were reminded by a few people throughout the morning that transplant day can be anticlimactic, I can say it was anything but. The friends and family who gathered with us to honor the sacredness of the day, the event itself–it was everything it should have been and more. Everyone who entered the room that day felt it. Healing is beginning now. It will take some time for the new marrow to take hold–a lot of hibernating and extra caution–but we are on a path to a healthy child–a well-rested little bear cub, a beautiful butterfly.
12 thoughts on “seed day and beyond”
Wow! So happy to hear that seed day was a success. And now for the hibernating bear cub to dream a new spring! We are all with you in spirit and have still been lighting our candle each day. And last night at Shabbatt services at Ner Shalom in Cotati we spoke Caemon’s name into the chanting circle for people who are healing and so he became a special part of our candlelit circle. I get a feeling that this very special bear-cub is well on his way to becoming a very, very special bear, indeed.
I have a candle that is very special to me. I light it before I read each stage of your journey, meditate for a short time after I’ve read your words, then extinguish the candle.
Healing thoughts from Australia
Oh T. What an amazing, special experience you created. I’m so hopeful for what’s next. C is handling it like a trooper and the strength and perspective that you and J have amaze me. Love from the east coast!
What a blessed day. I’m sad he has to endure so much pain on his way to recovery but I’m happy and relieved he’s responding so well to the treatment. I hope the next two weeks pass quickly for him. Love and light to you.
Sacred seed day — love to your hibernating family as you take the time to emerge through the winter’s increasing light.
Thrilled all went well with the transplant, now Caemon just needs lots of “sunlight”, and “water” to nurture his “seeds”…..his good health will “blossom” and emerge as the days get longer and brighter. He will also get through this rough time (it is horrible to see your baby in pain, and I am sorry he has to go through this), hoping that the mucositis resolves quickly, and that your little bear cub “awakens” with all the opportunities of a healthy and full life right in front of him. We are hoping and praying for his full recovery! Go Caemon!
a beautiful little butterfly indeed…
Thank you so much for sharing your family’s journey with us. I pray for you all every night so that God is sure to watch over this sweet little angel!
Reblogged this on Word Winding and commented:
As you gather with family and friends this week, soaking up love and light, send some to a dear little elf to help him on his way. He is full of new life-giving marrow and is healing now in earnest!
Don’t know if you got to see it…..but there was a big rainbow on your transplant day! The skies were celebrating!
Grandma Marks–saw it, photographed it, loved it 🙂
I have Caemon’s rock in my picket and it goes everywhere with me. Since it is in the same pocket with keys and cash, I touch it all the time and think about and pray for all of you many times a day. Really looking forward to giving it to him and to meeting all of you. Thanks so much for the update.
You all have been “the thing that is real” through the prep for Christmas and all the bad news the last couple of weeks. Merry Christmas Jodi, Timaree, and Caemon. MERRY CHRISTMAS!