wortlos: a decade

There aren’t a lot of words to use ten years after the worst words are first spoken. What is there to say when I can hardly grasp that a full decade has passed since I held a very sick boy through the night wondering what could possibly be wrong only for our family to be ushered in the morning into blood tests and hours later an ER and an ambulance ride and an oncology wing of a children’s hospital?

I have written those series of words so many times that I no longer think them when I write them. They are a well-rehearsed script for a woman whose life I do not recognize. I was a mother to a boy who was very sick, but I am now a mother to a girl who is not, who is twice his age. I scarcely remember that scared mother. And I am that mother. My brain cannot grasp this with any amount of logic.

For the past few years it has been difficult to write or say much of anything. People grow uncomfortable talking about loss after so long, even if they miss him too. I grow uneasy not knowing what to say. I meet new people now, parents of my daughter’s peers, and I find myself reassuring them when they learn of my boy, when they are sorry for my loss, when they cannot imagine the depths of my pain. I tell them sometimes that it’s okay, that mostly I am okay. I tell them that it is awful, that they should not try to imagine because it is far, far, far worse than imaginations can entertain. I say too much. I say too little.

The words that carried me through the diagnosis and the treatments and the death and the grieving and the longing and the missing are themselves so fleeting.

I miss them. I need them.

I miss him.

I used to feel that in keeping the telling alive, I kept him here. I kept him closer to me, to everyone else, and that meant I was coping or healing or something. It was something to steady me when the pain rocked me hard. In losing the words, what happens to him? But it was easier then to talk about the timbre of the pain, easier to puzzle it out. It was fresher, the fluency crisp. Now, I go weeks without giving the grief a name. It takes the quality of sunlight shifting, calendars growing swirly with birthdays and school. It takes the days and my moods growing equally shorter and less predictable, tears coming easier, to begin to grasp that it is here.

Oh, hello, Grief. You are looking different now, aren’t you?

Crunchier, dustier, muddled and muddied up with new sorrows and losses. A whole pandemic. Grief begins to look like a stranger in a store coughing near still-masked me, and me feeling rage well up, and when it does, tears spilling out along with the muffled and fast-tracked words, “My son had leukemia and died,” and I am shocked and the stranger is shocked because I wasn’t expecting that dark visitor, and certainly neither was he, but there it is, ugly and uncomfortable, words sitting in thick air, and I am here still just needing to protect my living child and my dead child from invisible predators.

There is a shortage of eloquent words for this stage of grief. Apologies are about all I can muster.

Maybe it’s a supply chain issue. Not enough to go around for so much weltschmerz and a mother’s patina-coated grief too.

Maybe words are overrated. Maybe they will return. I try not to agonize over it too much until days like these when I need them so.

Ten years. Soon his thirteenth birthday. Another five months and the tenth anniversary. The years keep piling up; the words keep floating away.

Caemon, almost three, a couple of weeks from diagnosis.

four augusts

It’s hard to go much of anywhere on social media this month without seeing parents rejoicing at the end of summer and the start of a new school year–that time of year when parents get more freedom and kids are the responsibility of some other adult for at least a few hours a day. Advertisements on television, mom blogs, displays in stores all point to the same euphoric feeling of relief that parents have this time of year, counting down the days until school starts. The culminating event of all this build-up is the iconic first-day of school photo, kids all decked out in their new-school-year finery captioned by their parents’ lament: “I wish she would just stop growing.” August on social media is a minefield for the bereaved parent.

All that festive back-to-school clamor hurts for fairly obvious reasons, but for me personally, it also heralds the beginning of the darker months, the time when, four years ago, all of the outside world became a jumble of voices and lights, and I focused everything I had on saving my son, only to find that these were the last months I would share with him.

My wife’s birthday was a week ago. It was a lovely day of celebrating, but that day too is marred by the beginning of the end. Four years ago on her birthday, we had our last family photos taken–the iconic photos that have become Caemon the Legend, Caemon the Hero, Caemon, the Beautiful Boy Who Had Cancer, Caemon the Poster Child for JMML. Exactly one week following that day, August 21st, was D-Day: the anniversary of our initiation into the cancer club.

In fact, four years ago at this very moment,  Jodi and I were sitting in the hallway of the children’s oncology unit at UCSF, talking to a hematology fellow who would confirm that our son had some form of leukemia. I remember shaking so hard I could hardly sign the consent forms for the studies he was entering. It was just the beginning.

August is the keeper of so many beginnings. It holds Caemon’s first day of preschool, his first camping trip in the redwoods, but after August 21st, it held his first stay in the PICU, his first chemo, his first oncologist. After February, this is the month I dread the most. One might think, four years on now, that I should be getting over the diagnosis, that I should learn to move on, that I should place all my focus on my healthy baby girl and teaching and new hopes and dreams and somehow forget. But how can I when it’s August?

It’s August, and before I know it it will be September and his birthday, October and November and the memories of the hospital, December and his bone marrow transplant, January and his relapse, and February, the end–the end of my beautiful Caemon.

It’s August, and I don’t have my boy who should be going to school, and I am not rejoicing. It’s August, and my son did stop growing. August is just too heavy to forget.

The coming months are the hard ones for me. They bring with them so many difficult memories, and while my daughter and my imaginings of her future do certainly provide a counterweight–even respite–to some of that pain, this time of year will forever be changed for me. There will never be a back-to-school season when I don’t wonder what a seven-year-old or thirteen-year-old or college freshman Caemon might have been like. There will never be a Halloween when I don’t think of his return to the hospital in his nurse costume or a Winter Solstice when I don’t think of his transplant.

And so, with August 21st, I enter the season of missing my son more poignantly. Another year has passed since the beginning of his end, four years of Augusts without him.

 

the boy and the turtle

I rarely dream about my son. I know people who regularly dream of their departed loved ones only to awaken disappointed, even devastated, that they were dreaming. I don’t typically dream about Caemon though. Oh, but I try. Most nights as I’m falling asleep, I ask to dream of him. I ask him to talk with me in his dreams. Sometimes I beg. Typically, however, my dreams are the sorting-out-my-day variety, and rarely do they contain even a glimpse of my precious boy.

Needless to say, I was surprised when a few weeks ago, I had a very vivid dream featuring Caemon. It was the sort of dream from which I did not want to awaken.

It all started with me seeing Caemon on a bus. It was a crowded city bus, in a city not unlike San Francisco. I could see him sitting in a seat, gazing intently forward with a serious and slightly worried expression on his face. His brow was furrowed. He was traveling alone, but there were many other passengers on the bus. He was older, taller, maybe about five. He had his glorious blonde hair. I knew he was going to some sort of music or art class in this unknown city where were apparently living.

As I watched my son leave on this bus, panic struck me. I was terrified. What had I done sending my small child away on a city bus without an adult? Why hadn’t I thought to take him to his class myself? How would he know where to go? How would I know if he arrived? What kind of mother was I? I spent some time in this agonizing state before the dream jumped into the next day. My son was there, and I had opted to accompany him on his bus trip.

When we exited the bus at its destination, we were in a strange industrial area with vacant lots, warehouses, and construction equipment. It was eerie, quiet. Caemon held my hand as we walked through this space for what seemed like miles, and I wondered again how he had known where to go and why I would have let him travel like this on his own. Soon, we had left the industrial area, and we were on a quaint street with a variety of storefronts. Caemon entered one of these, taking me with him. We ascended some stairs, and I remember dark woods, jewel toned cushions, and a lovely homey feeling. We seemed to have entered what was Caemon’s school, and he was showing me around, pointing things out.

The last bit I remember is that Caemon stopped to show me a plush turtle. He picked it up and told me, “This is the turtle I tell me feelings to.” I was utterly touched. He was worried that if he were to go somewhere else, he wouldn’t have the turtle. I was so comforted that he had such a lovely place to be and even felt reassured that I had let him travel on his own because he was a bigger boy, and he could handle it. And he had this lovely feelings turtle.

I woke up at the end of the turtle scene, and there was that feeling I had heard about: utter disappointment that I had been dreaming. But there was another feeling lingering too, a feeling of dread of panic. It stuck with me the entire day.

I had let my son go off on his own. I watched him go. I let him go.

One doesn’t need a psychology degree to see where my unconscious was going with this, and this strange feeling lingered, this feeling of seeing him looking concerned and serious and noticeably older, this feeling of worry. And I think there is a part of me that feels like I really did see him.

In moments like this, I am always quick to mention that I am a skeptic. Perhaps I should call myself a hopeful skeptic. I want to believe that my son visited me in a dream. I want to believe he is communicating with me, telling me that while I had to let him go off on his own, where he has gone is pretty great, that he has navigated even scary industrial places just fine on his own, and, yes, I even want to believe there’s a stuffed turtle to whom he can tell his feelings. Such beliefs might be comforting.

I want to believe this because in all honesty, I don’t know where my son is.

I have so many different foundations of belief, but mostly, I feel like I simply lost him. There was this feeling of dread for months after he died that I had carelessly left him behind somewhere, that maybe he was riding some public bus with malicious strangers or wandering streets or sitting alone at a park. But I didn’t know. I knew where his body went, but I didn’t know where he went. That my psyche would try to grasp this in my sleep would be no surprise to me, but I still don’t know whether that is the whole story.

Anytime I remember this dream, I come back to this feeling, but I also come back to the turtle. A few days after I had the dream, I told my therapist about it. She smiled and thought maybe I needed to get a stuffed turtle. I agreed and then remembered that Caemon had one, one we had gotten for him at an aquarium when he was a baby. The turtle, while not a favorite of his “Fellas” (the name we all used for his stuffed creatures), came to his tea parties and participated in his “Ten in the Bed” game of throwing animals out of his bed at his moms. I was so comforted to remember the turtle. Maybe I would pull it out, share a few feelings with it. If anything, maybe it would help me remember the dream and what a five-year-old Caemon might look like.

About a week after I had the dream, Jodi and I went to visit a friend whose son Orion has leukemia (AML). He was being treated at UCSF, and we wanted to offer our friend some support after they had received some hard news. Her son was battling a rare infection, and the doctors weren’t sure he was going to be able to go to bone marrow transplant. When we arrived at the hospital, our friend let us know that Orion was up for visitors. We had yet to meet him, and had wanted to for some time, so we both took deep breaths, boarded the all-too familiar elevators up to 7-Long, and prepared to enter the floor where Caemon had lived for nearly six months. Soon, we were entering Orion’s room, which had been one of Caemon’s several rooms as well. And there was Orion, a lovely, bald, blue-eyed, six-foot-something boy. We chatted with him and his family for awhile. Sometimes I would just look at Orion, send him some love, and admire what a strong spirit he has. After some time, from under his blankets, this fifteen-year-old pulled a stuffed animal, and as he nestled it into his neck, my breath caught.

It was a turtle.

My head was swirling with Caemon and the dream and so many feelings. It took me some time to compose myself, but after a few minutes, I asked Orion about the turtle. A friend had given it to him. He found it comforting. As we spoke, he hugged the turtle to his neck, stroked it, rested his head on it when he felt tired.

I didn’t know what this meant. I still don’t. But I know Orion has a turtle, and I know it makes him feel better.

A week or more later, I received a message from Orion’s mom. She wrote that Orion had chosen to spend the rest of his days at home, such a courageous and beautiful and heartbreaking decision. His infection was preventing him from going to transplant. His leukemia wasn’t responding to chemotherapy. He just wanted time with his family and friends, time to be a kid before, in his words, he was to go back to nature.

My wife was not in the room when I received this news, but a few moments later, she appeared, and I told her. After a few moments of sitting with this, Jodi asked me, “Do you know what I was doing just now?”

As I had been reading the email, Jodi had been in the garage. She noticed that some boxes were piled on some of Caemon’s things, and she became upset by that, so began clearing them only to find his box of stuffed animals. When she opened the box, sitting on the top was the turtle. Just moments before she came downstairs and heard this news, she had pulled the turtle out, taken it to our room, and placed it on my pillow.

I know I wondered in that moment if Caemon was going to help, if he was here to meet a friend and usher him on to the next plane of existence. I won’t pretend to know what forces are at work here. I don’t know whether my son is hanging out with this other amazing cancer warrior or whether they just have a shared affinity for stuffed turtles. I don’t know if he’s trying to tell us he’s around, that he wants to help out, or whether I’m just looking for signs. I don’t know. All I know is that this happened and that I can’t stop thinking about it and that I cry tears of relief when I do.

Yesterday, I received in the mail a sweet plush turtle from a friend wish whom I shared this story. I held it in the crook of my neck. I thought of my son, and I thought of Orion, and my heart filled with love. I don’t need anymore meaning than that.

c is for crocodile: a poem

Sometimes people wonder where the title of this blog–and now our organization–came from. It all started way back in our first days of Caemon’s diagnosis, as I struggled with this shift in our reality from learning the alphabet to learning the names of drugs. Recently I stumbled upon a few lines of a poem I had scribbled down in a book while we were in the hospital. Today, I finally wrote it:

C is for Crocodile

When we first heard the “C” word
That long August day,
I thought, No, no, no!
You see,
C is for crocodile
It’s for cuddles on the sofa.
It’s for cooling off at the lake.
It’s for climbing on my back,
And cackling and giggling and squealing with glee.

We quickly learned
That C was for Cytarabine,
Chemotherapy,
Flow cytometry,
Blood counts, and
Intensive care units.

Yet you showed us
C is for crocodiles
It’s for cars in the hallway.
It’s for calling your grandma,
Kissing your cousin,
And for comfort in your mothers’ arms.

But C was for cancer,
And crying at midnight,
For careening through time and space
With no brakes.
C was for crocodiles
And cuddles with Caemon;
C was for cooking and crafting and counting.

We thought C was for childhood,
Campouts and sand castles,
Coaches and crabfeeds,
Calling your girlfriends,
Going to college,
Cuddling your babies.

But C was for cancer,
And chemo,
And chimerism,
And clinging to cures.

Still, you showed us
C was for courage,
For coming to terms,
For cradling IV pumps,
And Caemon the Nurse.
Yes, C was for Crocodile and coban too,
For cockstops and central lines,
Culture swabs, and supply closets.
And when it got too hard,
C was for Croc, our warrior child,
The boy who would certainly conquer this cancer.

But soon,
C was for chimerisms, counts too low,
Immature cells,
Conference rooms with oncologists.

C became climbing into your bed,
Lying in the crook of your arm,
Clinging to your life.

C was for crash carts,
For calling the code,
For commotion and chaos,
Confusion and dread,
For calling out, “Caemon!”
For cuddling you one last time,
For crumpling to the floor.

C was for crocodile.

-Timaree F. Marston

honoring children’s grief and an open letter to our niece

About a month ago, our sweet five-year-old niece and her mom came for a visit. She has visited a few times since Caemon’s death, and each time has been difficult for her. The first time following his funeral we were still at our old house. I walked into Caemon’s bedroom to find her some books and toys to play with, as we didn’t want her to be in his room without supervision. She followed me into the room, and as I was gathering some things, she looked up at me, her big brown eyes so earnest, and she asked, “You miss Caemon?”

“I sure do, sweetheart.”

“Me too,” she agreed. “Too much.” My heart broke as I knelt down to hug her, and we talked about how much we missed him. We gathered some favorite books of his, and proceeded to read. Later, on the same visit, she was wandering throughout the house as though looking for something. A look of sadness strained her face, and Jodi asked what she was looking for. She didn’t know. Then she asked if she was looking for Caemon, and she nodded and began to cry. She knew he wasn’t there.

On this most recent visit, our niece’s grief was still very present, and while she seemed a little more easily distracted because we were in a new home, she still felt Caemon’s absence keenly. When she saw our little altar for him, she stopped and admired all of this things. She regularly grabbed his photo books and wanted to sit with us and look at them. Throughout the visit, she shared her favorite memories of Caemon: a day she and Caemon and my parents went swimming and they got to eat ice cream; another day when we went to the lake and she and Caemon played with water balloons. She delights in these memories, and we urge her to share them–with us, with her younger cousins–because we know she is one of the few children who will remember Caemon. We have such hope that any future children we may have will know Caemon through their cousin, and that she will get to relive knowing him through her sharing. This is a big responsibility for a small child, though. It’s huge burden for her to bear, and while I’m not sure it’s fair, her grasp of this loss is powerful. She knew Caemon. They were very close, and she feels his absence so deeply any time she’s around us, any time she thinks of him. She is the only child who was able to visit Caemon in the hospital (early on) or to Skype with him when he had his bald head, and, thus, she has a frame of reference for all of this.

There are other children who are trying to understand Caemon’s death, children who had played at the park with Caemon or had come to our home. A few of them still talk about him regularly. One girl has assigned him a star. Another boy asks his mom from time to time where Caemon is, wanting to know if maybe he’s still in the hospital. Other children whose parents may have only known us through this blog or other online venues have had their first talks about death with their parents through Caemon’s loss.  Our little nephew, a year younger than Caemon, a boy who idolized his “big boy” cousin, doesn’t quite know where he is. When we mention him, he still looks around as if he might see him, though he’ll tell his parents that he is in heaven.

Last month, as our visit with our niece was nearing its close, we were driving around town. From the back of the car, she shared, “I wish Caemon was still alive. I wish he wouldn’t have died.” It really is that simple. It’s what we all feel wrapped up in the perfect language.

The grief of the children in our lives is something I hold so tenderly. I am saddened that any of them have to know death at all at such a young age, but a death of one of their peers has got to be utterly confusing, mind-blowing. Many of them still don’t grasp object permanence, let alone mortality, memorial services, cancer, rare leukemias, and grieving parents. I ache for these children who are trying so hard to understand, for their parents who are trying so delicately to help their kids navigate these waters. I can only hope that by knowing our boy’s story, these kids will somehow grow up more loving, more compassionate and will help to carry the torch for a boy whose light was extinguished far, far too soon.

Shortly after her visit, my wife wrote this open letter to our niece. We would like to share it with you here:

Dear Five-Year-Old Bri,

Thank you for coming and visiting with us. You’ve grown up so much over the past year, and your heart is as beautiful as ever. I know it’s not as much fun here without your cousin, Caemon, and I know you miss him very much. We do too. Sometimes it can be very sad to see so many reminders of him but not be able to play and laugh like you used to.

We liked hearing your stories about him, and we want you to know that you can always talk to us about how you are feeling, even if it means we cry a little bit. I loved your stories about last summer and how you and Caemon practiced throwing water balloons at Grandma’s feet. That was so much fun! You two had a lot of adventures together: swimming at Morton’s Warm Springs, riding around in Caemon’s wagon, swinging on Grandpa’s giant swing, playing tea party, taking baths, and, of course, all the sweet hugging and kissing.

You need to know that Caemon loved you above all other children, Bri. He loved when you came to stay with us, and he really loved being at Grandma and Grandpa’s with you. I know you are hurting, but we hope over time the memories of you and Caemon will make you smile, and maybe you will pass on your stories to your younger cousins who didn’t know him. We hope you will keep him in your heart, as you remain in ours. We love you, Bri, and if you ever need us, we’ll be here.

Much Love,

Aunt Jo and Timi

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busy, busy bees

It has been a bit too long since I last posted, but this is due in large part to the fact that we are starting to be very busy with our work to honor Caemon’s legacy. I would like to share some of our activities and planning with you.

C is for Crocodile–The Organization

First and foremost, we decided on a name for our organization. After seeing so many wonderful recommendations and then seeing some variations on the blog title, it occurred to Jodi and I that C is for Crocodile is the perfect name for our organization, and variations on the title allow us to title different areas of our work under subtitles like “C is for Caring” and “C is for Cure.” We have secured a post office box and have a tiny little savings account designated for this purpose. Now we are working on our 501(c) (nonprofit) status so that we can put everything in the organization’s name.

How you can help:

• Webpage/Graphic Design: If you are a web designer or graphic designer and want some pro bono work, we would like to put together a nice, shiny website that can serve as a hub for all of our activity. We have already secured cisforcrocodile.org. If you are interested in helping us put this together, please contact us at cisforcrocodile@gmail.com.
• Fundraisers: After you read everything below, you’re going to see that we’ll need some money to carry all of this out. If you have ideas for a fundraiser or would like to hold one, great! At present, there is a fundraiser happening via two lovely Caemon supporters. They are holding a Pampered Chef event through which they are donating all commission made from purchases to C is for Crocodile. You can visit the event here: http://new.pamperedchef.com/pws/consultantheather/guest-landing/8835923524763. Purchases made via the event site through July 31st will benefit C is for Crocodile.

Book Drive

Throughout Caemon’s treatment, he was the recipient of so much generosity. AT UCSF, toys and stuffed animals came through on a regular basis, and while the playroom had books the kids could borrow, there just weren’t a lot of books coming in on the big gift carts. Because Caemon loved reading so much, and because we value it so much as well, we have started a children’s book drive, which we will hold annually. We are collecting new books for kids from infants to young adults. Once collected, we will distribute these to pediatric oncology units in California hospitals.

What you can do:

Donate books! We are asking for children’s books of all kinds–probably even a few grown-up novels appropriate for kids in their upper teens. You can send them to our post office box: Marston-Simmons, P.O. Box 9214, Santa Rosa, CA 95405. If instead you would prefer to send a gift card from our local bookstore, you can go to http://copperfieldsbooks.com/gift-cards, or from a larger chain bookstore here: http://www.barnesandnoble.com/u/gift-card/379003883. With these, we can go pick out books to fill in any age gaps where we may be missing books. If you choose to send an e-gift card, just use the cisforcrocodile@gmail.com address. We will keep this going until we have enough books to distribute. Ideally, we’ll get these out in the fall.

Light the Night: Team Caemon

Light the Night is an annual fundraising event held by the Leukemia and Lymphoma Society (LLS). This organization provided us with support from a number of different angles during Caemon’s illness, and they directly fund research conducted by Caemon’s doctors. The Light the Night walk is held each fall in cities all around the country. Team members each raise at least one hundred dollars and then join their team for a night-time stroll with illuminated balloons. At this year’s North Bay Light the Night walk, Caemon will be the Remembered Hero and will thus receive special recognition. We will be walking both here in Santa Rosa and in San Francisco. We may also have the very exciting opportunity to donate our funds directly to a researcher. More on this will come later. In fact, we are meeting today with LLS to learn about possibilities for Caemon’s legacy through this organization.

What you can do:

• Join and Walk: If you are local, and you would like to join our Santa Rosa team, you can join here: http://pages.lightthenight.org/2013/teamcaemon. You needn’t be an athlete to participate; you only need to be able to ambulate slowly for a couple of hours with lots of other really great people.
• Lead a Team: We are also looking for people to head up Team Caemons in their areas. Being a team captain is very little work (it involved a bit of motivating, some emails–about as much as you want it to involve), but it allows us to spread our efforts to cities all over the country. If you think you might want to start up a Team Caemon in your city, you can also visit this page: http://pages.lightthenight.org/2013/teamcaemon, and click on the link for starting a team in your area. Then, let us know you’ve started one. More immediately, if you are in or near San Francisco, and you would like to captain that team, we need a team set up there as soon as possible.
• Donate: Of course, if you can’t join one of our teams, you can also make a donation to Team Caemon. Use the links above to visit the national Team Caemon page, and click on any team member’s name to make a donation.

We also have a national Team Caemon for the LLS Team in Training. If you are an athlete, or would like the support to be one, you can join Bree Davidson and others in this effort. Visit the Facebook page here: https://www.facebook.com/TeamCaemon.

Care Packages

Children are diagnosed with cancer every day, and, according to the NIH, about a third of those diagnoses are leukemia. We would like to be able to send care packages to families undergoing a recent diagnosis of rare leukemia, particularly JMML. We won’t be able to send care packages to every family at this point, but given that there are under 50 diagnoses of JMML annually in the United States, this is something we feel we can do.

What you can do:

If you have heard of a child recently diagnosed with JMML, please send their families our email address, or send us some contact information, and we will send out a care package. Eventually, we will put out lists of items that can be donated for care packages, and we will also have fundraising efforts to support this. If you have ideas about this, feel free to contact us at cisforcrocodile@gmail.com.

Other Projects

Caemon Movie: We would like to work with a filmmaker to develop an educational film for those in the medical profession about the importance of medical play. We have a number of video clips of Caemon’s medical play as well as access to his providers who saw directly how his fascination with medical play assisted him through what can be a fairly traumatic experience for a young child. If you are a filmmaker or know someone who would be willing to donate time for this project, please let us know.

And obviously, the book: I have dreams of turning much of what I have written into a book. People have been suggesting this since early on in Caemon’s illness and I certainly feel a book in this. If you’ve got connections in the publishing industry who might be interested, send them my way (I’m not interested at this time in self-publishing).

Your ideas: Of course, I’m sure there are other ideas out there, and we will certainly be working on all of this over time. If you have a project or suggestion you would like to offer for carrying on Caemon’s legacy–or if you have done something on your own, please let us know. We would love to hear from you.

 

 

Thank you to everyone who has worked on these projects with us thus far. We look forward to building our organization knowing we already have so many wonderful supporters out there.

the tiniest beacons

Two nights ago, Caemon had the tiniest of blips on his white blood cells. Since his conditioning, his white cell count, along with his neutrophils and other forms of white blood cells, have shown up on his readouts as < 0.1, or, in other words, pretty much nothing. That’s what the conditioning chemo is meant to do. It obliterates the marrow and all these cells so that the new marrow can take over. The blip a couple of nights ago brought his white blood count (WBC) to a meager 0.2, but it was just a blip. It was an indication that things might be percolating, or perhaps that there was something there that could do some percolating. Yesterday, the count came right back down to 0.1, but it had been nice to think about.

Yesterday, the medical team came in smiling for the first time since we’ve been here, really, but not about the blip. When they entered, our boy was standing on the bed holding onto me and talking–well, protesting their entry, actually, and demanding I not talk about him–but it was talking they hadn’t heard. They were beaming, and pleased his liver numbers were decreasing, that he hadn’t had a fever in nearly a day, and that he was up and had the energy to be surly and objectionable. I was too, for as challenging as a cranky crocodile can be, it’s better than a lethargic, apathetic, constantly sleeping crocodile. A crabby croc is one with fight.

Last night, Caemon needed blood and platelets, had a bit of a fever, and was having some pain that prevented him from swallowing again. The need for blood certainly wasn’t unexpected, as he receives blood products every day, but seeing him in pain again and seeing him start to retain fluid again bothered us. His practitioners had it under control, though, so I left to get some sleep, leaving Jodi to stand watch over the boy. He had a restless night. Neither of them slept well.

Perhaps growing cells makes it harder to sleep. This morning, our son had both neutrophils and white blood cells show up on his complete blood count (CBC). His neutrophil count was 40. His WBC was 0.3. While these are still just tiny jumps, they are cells that will grow into an immune system in Caemon’s body. They are his first signs of recovery. A little more good news came in the form of lower liver numbers–the lowest they have been in some time. I cannot begin to explain the sort of hope this fosters in me.

We still have a long road ahead of us, and we can’t know until we’re on the other side of this whether we have found the darkest of the dark days or not yet, but in this moment, those sparks and flares sure do look like traces of dawn.

Three B’s

BACK

We have returned to the hospital. In fact, we needed to come back a day early because after Caemon’s blood draw on Halloween, the hospital called us to say his platelets were dipping too low for surgery, and they needed him to come in for a transfusion. We took him trick-or-treating (at exactly two houses in our neighborhood, and in the pouring rain), and then made our way back. Caemon charmed everyone in the hospital in his very official nurse’s uniform and was invited to work in various departments. He nearly followed a woman into the ER, ready to help.

The fact that Caemon was able to walk back in was lovely, but better than this was that he didn’t have to wear a mask! Along with learning that his platelets had dipped a bit, we also learned he was no longer neutropenic. Being able to walk through the hospital doors and into his own room a free, normal boy did a lot for him, for all of us, I think. It didn’t hurt matters that one of Caemon’s favorite nurses (we call her the Caemon Whisperer) left a treasure hunt for medical supplies all around our new room. He was delighted.

It was hard to leave home, and especially hard to want to be in this environment again, away from all of our comforts, and it was rough coming back a night early, leaving things in more disarray than we had planned, but it was what had to happen to keep our boy safe. As we drove over the Golden Gate, Jodi and I shifted into hospital mode, ready to take the next steps toward reclaiming our son.

BIOPSY

Yesterday was a big day, as Caemon had surgery to place a central line (Broviac, for those interested) and to receive another bone marrow biopsy and lumbar puncture (spinal tap) with an injection of chemo to his spinal fluid. We waited and waited for surgery hour to draw near, and as is typical hospital fashion, his surgery time came and went without any word of when he would be transported. Meanwhile, we had to spin a number of lies to help Caemon cope with not being able to eat or drink for hours on end, the most effective of which was that the hospital was out of food and water. It’s amazing how well this works for him, and he just busies himself with something else until he thinks to ask again. He is so good-natured about this, and it’s honestly a little amusing to hear a tone of incredulity coming from a three-year-old. How does a hospital just run out of food anyway?!

The time finally came for the surgery, only an hour and a half after it was originally scheduled, and we headed down. We met all the usual players, the anethesiologist, the attending oncologist, the nurses from the OR and pre-op, and we got him ready. He was so brave once we were there, busy asking questions about the “warm room” (the operating room) and what sort of medical supplies people might have available to give to him. I donned the bunny suit (one day, I’m sure Jodi will snap a photo) and accompanied him in until he was asleep. Then, Jodi and I left to use our nervous energy to finish moving back into the room.

Caemon recovered well from his surgery, and after some ice cream, chocolate, pizza, and pain medication, he was feeling pretty good, and really, who wouldn’t with a diet like that? Jodi and I were trying to prepare ourselves all day for what might come, as we knew the preliminary biopsy results would be back later in the day. We knew that his platelets were lower, and we knew his oncologist was expecting to see that he needed more chemo, that his disease was still pretty active. When she finally came by in the evening, she said she was a little surprised and a little confused by his results because they showed some unexpected improvements, improvements to his platelet quality, his red blood cell quality, and overall less disease. It was hard to read her because I think this brilliant woman was genuinely surprised, but we took these tidbits of good-ish news. She wanted to get the official results today before making any official plans about his next round of chemo (she thought we might need to try something stronger), so we waited again hoping the official results didn’t show something the preliminary results missed.

BONE MARROW

All day today, we have waited to hear the flow cytometry results on the bone marrow biopsy. These are the official results that could help determine the next round of treatment. Finally, just an hour or so ago, the doctor came by to tell us what she had learned from the official reading of the bone marrow. Her exact words were, “His bone marrow actually looks really good! I’m really happy with it.” You may recall that the last time we spoke with our oncologist on a bone marrow biopsy day, she had us in a conference room and had tears in her eyes. This time, she pulled us out into the hallway (because Caemon was sleeping), and with a smile on her face, she read us the email report showing that Caemon’s bone marrow is showing only 3% of the blasts that were in such abundance (over 20%) in the last biopsy. She is confident that his bone marrow is recovering well and that the disease is responding just as it should to the chemotherapy regimen they have used.  Jodi and I aren’t accustomed to hearing good news, but this was definitely news of the good variety and certainly something that gives us a good dose of hope.

Today Caemon starts his next round of chemotherapy. We have taken advantage of his freedom today, taking him to the playroom, dancing around the room with him, letting him walk the halls a bit. None of us is looking forward to the rough days that chemo brings, the fevers and rashes and other side effects, but knowing that it is working and that this next round may get him healthy enough for transplant is a huge relief.

Transplant is, after all, our next step. We have not spoken with any of our bone marrow doctors in a couple of weeks, but we learned from our oncologist that Caemon is scheduled to be admitted for transplant in early December. While they don’t have one specific donor pinned down, apparently they are examining several donors, who are already excellent matches to determine which is perfect. This level of precision is certainly welcome, and the knowledge that we have ample donors from which to choose is so heartening, given the number of blows we have had since his diagnosis just a couple of months ago.

We are on our path, as hard a road as it may be, and we are learning that our boy has a lot of fight in him. He is so strong, so brave, so precious.

Our boy gazing at the fire he helped me build the morning before we came back.