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.

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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