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

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.