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.