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.

in case you’re curious

Yesterday, Jodi and I took a trip to San Francisco and our first trip back to the hospital where Caemon was treated. While the visit had originally been focused on meeting with a couple of nurse friends for lunch, we learned before we left that Caemon’s autopsy results were ready, and his oncologist had offered to meet with us. Although the thought of returning to the hospital was unimaginable, we wanted the information, wanted the opportunity to sit with his doctors, so we agreed. Having a “sit-down” again flooded us both with such anxiety–after all, we have had plenty of these, none of which resulted in welcome news–but I reminded myself over and over yesterday morning that we had already experienced our worst fears. Nothing we learned was going to make losing our boy any worse.

When we arrived at the hospital, Caemon’s primary oncologist met us in the lobby, as did one of the oncology fellows who has been with us from the beginning of Caemon’s diagnosis. They led us to the university side of the hospital and up to the doctor’s lab and then her office. It was good to be on this side of things, to see where this groundbreaking research is done, and more importantly, to be separate from where Caemon took his last breaths. Joining us was our beloved social worker also from the hospital. We were grateful to be surrounded by these compassionate people as the details unfolded. It seemed right for them to be there as they had been all along.

We have suspected since Caemon died that he likely had some leukemia in his lungs. His last days saw him needing more and more oxygen. He had developed a cough, and while some of this was attributed to the virus CMV, which was being treated, some of it seemed unexplained. There was some concern that he had another infection too. We learned yesterday that Caemon’s lungs were, in fact, filled with leukemia. Leukemia lined all the pockets in his lungs which would normally contain air, providing less and less room for air to enter as he became sicker and sicker. There were also small nodules forming in Caemon’s lungs–the beginnings of tumors–as well as some CMV and some blood. His lungs were four times heavier than normal lungs. They were heavy with disease. He had clearly been doing some bleeding for a few days, most likely due to the burden of his disease. There had been some concern that Caemon’s intubation (the placement of a breathing tube) had been the cause of bleeding, that this bleeding had resulted in his demise, but ultimately, Caemon’s lungs were so overcome with disease that even had a breathing tube worked, he would not have survived more than a few more hours. He was simply done.

The autopsy performed was limited to the lungs and spleen. Caemon’s spleen had been problematic from the beginning. It was what first alerted a pediatrician to send for blood tests; it was the thing every doctor who entered his room wanted to examine. An enlarged spleen is characteristic of JMML, and in Caemon’s case, the spleen was sizable. It trapped his platelets making it difficult for him to maintain safe levels, and it also carried a great deal of disease. We learned yesterday that while a normal spleen is pink or reddish, Caemon’s was white–white with leukemia. I imagine had more of his body been examined, we would have seen leukemia everywhere.

These details might seem unsettling, but honestly, I needed to know. I needed to know that it was his leukemia that took him, that it wasn’t some sort of bleeding or trauma that could have been prevented. However, confirming that Caemon’s death was the result of his incredibly aggressive disease provided a good sense of closure. I hate that he had JMML. I hate that  the type of JMML he had was so quick to take my boy, but I am heartened to know that we did absolutely everything we could.

Sitting there with Caemon’s providers and later talking with more of them about these findings, learning the details of why he succumbed to JMML, was as hard as anything, but I am learning since his death that I have my son’s insatiable curiosity. Caemon used his curiosity to overcome his fears, perhaps not intentionally, but quite successfully. I find myself these days reading the articles on JMML that I wouldn’t touch during our son’s treatment. I want to understand this disease, Caemon’s particular mutation (PTPN11, if you’re interested), how it worked in his body, why it took him. Finding an intellectual framework helped me settle into his treatment, and it is a place that provides me with some comfort now. I can’t change what happened to Caemon–oh, how I wish I could–I can learn, though, and through that learning maybe find some solace there.

code white

Jodi and I are preparing to leave on a trip, something to get us away from our lives and home, to give us some quiet and healing space. We plan to do some writing, to spend time outdoors, and to giving our morning some positive outlets. Before this can happen, though, there is something that has to be written here: the story of Caemon’s death.

Readers, please know you don’t have to read this. It isn’t incredibly graphic, but it is the very detailed story of what happened in Caemon’s last twenty-four hours for those who want or need to know. It won’t be easy for anyone to read.

Many people have wondered what happened, how Caemon went from what seemed to be progress to what then seemed to be his rather sudden death. What I can say with a fair degree of certainty now is that his death was not sudden. It felt that way because of the hope we maintained for him, but our sweet boy was starting the process of dying when his disease relapsed.

When I wrote the post “Baby Steps,” I was looking for every shred of hope I could find, every bright spot that might indicate Caemon was making progress. I was not alone in this. When the doctors would come in for daily rounds, they would share the news of the day, and we would all celebrate the small victories: Caemon’s swelling had gone down some, the new drug was holding the blasts at a steady level, he hadn’t had a fever, he was hungry for a few bites of food. Of course, looking back with the clarity of hindsight, these hardly seem like victories. In fact, I can see, as Caemon’s doctor so gently pointed out to us on the phone today, that so much of what we were seeing, so much of what I was writing about in that post was about Caemon beginning to die.

The day after that post was written, February 4th, we were relocated for awhile in a separate room for a maintenance issue. The night of the 3rd had been a rough one. Not only were we in a strange room, but Caemon was very uncomfortable. He had needed oxygen throughout the night, but he was also hard to soothe. This was in part because we had changed his pain medication. After having rashes in response to morphine, we moved him to dilaudid, but this seemed to be disturbing his sleep, so we had changed him one last time to fentanyl. That night, we had such a difficult time staying on top of his pain. He cried out frequently and was simply not feeling well. None of us slept much as we tried to keep him comfortable. Unfortunately, the next morning, he was due for a CT scan and would have to go under general anesthesia, so he was prevented from drinking after a certain time. The poor boy had a very sore throat, so the absence of his tea and water was distressing to him. He just could not get comfortable, but we distracted him, loved him, played his music, and eventually took him early in the morning for his CT scan and back to his room where he could drink as much as he wanted (and oh did he love his tea when we returned!).

Early in the morning, we had found some good levels of pain management for Caemon, and while he was sleepy, he was also conscious throughout parts of the day, and he always wanted one of us lying in his bed with him. We were happy to oblige, feeling the need to be as close to him as possible and also hyper-aware of just how exhausted we all were. Lying still was about all any of us could do. We talked with the nursing staff about making sure we had a more restful night, especially given that Caemon was scheduled for his first dose of radiation for his spleen the next morning. By evening, we were able to move back into our room perched over the city, and we began to settle in again, putting some of our trees back on the walls and trying to make Caemon comfortable.

It’s no mistake that we were surrounded by the most special nurses during these challenging days and nights, and it was no surprise that night when one of our favorite night nurses was with us. When his shift began, we came up with a plan to manage Caemon’s pain and to make an effort to get some rest. We all certainly tried. The pain was as under control as it could be, but soon Caemon started having some difficulty with his breathing. For several days, he had struggled a bit with his breathing and had done some grunting and breath-holding, all of which we thought was an effort to keep from coughing because the coughing hurt his throat. This difficulty was new though. He wasn’t holding his breath; he was just having a hard time. He was connected to an oxygen saturation monitor, and typically, we wanted to see numbers in the upper 90s to 100. His levels that night started to dip into the 80s and for longer and longer periods.

As this was happening, Jodi and I were increasingly aware that Caemon might end up in the PICU (pediatric intensive care unit). While we were certainly prepared for him to go there if he needed it, he also didn’t want to jump on extreme interventions if he was still functioning well in his room with the care of his providers. Before long, the resident physician on call did bring in some representatives from the PICU (the Rapid Response Team), who assessed Caemon and determined that he was fine to stay on our floor but would need extra monitoring and may need a trip to the PICU for some assistance with his breathing. A chest x-ray was performed, he had more monitoring, the extra team lingered and jumped into the room any time his numbers dipped or climbed, and his nurse came up with as many ideas as he could to help support him–everything from a blood transfusion to get his oxygen moving throughout his body to an anti-anxiety medication to calm his breathing to a dose of Tylenol for a creeping fever. Caemon even agreed to wear an oxygen mask, something he had never willingly done before. All of these efforts were mildly helpful, but none of them was going to stop this train we were riding.

As the medical treatments were administered, Jodi and I offered up everything we had in our mothers’ tool boxes. We read Caemon his favorite books. We sang him songs and told him stories from memory. We wrapped our arms around him and kissed him. We talked to him and rubbed his feet with lotion. We told him over and over how much we loved him and how much we believed in him. And through his mask, he told each of us separately that he loved us. He hugged our heads.

Soon, Caemon’s oxygen levels were dipping lower more frequently, and his pulse rate was higher and higher. He had been given some hydrocortisone (a steroid) to prevent him from having reactions to the blood, and at one point, we thought he was reacting to this. He start reaching his arms out over and over again. He was lying down, but he would ask to lie down. He would ask me to pick him up, and I would, and he would ask me again to pick him up. This disoriented state continued for some time and his oxygen levels dipped lower. Everyone knew it was time for him to go to the PICU. We didn’t want to go because we both had a feeling he wouldn’t make it back, but we knew it was time. The team readied a gurney for him and got his monitors set up. We gathered our things and backed out of the way while Caemon’s nurse picked him up to move him. When he laid him down, admidst the shuffle of trying to move his IV pole, the PICU nurse exclaimed, “He’s not breathing!” Everything became a blur of bodies and movement, and in seconds someone shouted, “We need to call a Code White!” If you’ve ever watched television shows about hospitals, you know that a Code Blue is indicative of a person experiencing a life-threatening emergency. A Code White is such an emergency for a child.

In moments, a crash cart was in the room along with upwards of thirty or forty people. Jodi and I first stood in the corner as we watched them begin to help Caemon breathe, as we watched his vitals on the monitor. We were both awash in panic when a nurse spotted us and asked whether we wanted to leave or not. We told her no, so she and another nurse sat us down while she began to explain what was happening. At this point, we could not leave. We had seen him go through everything. We had heard every medication that was administered. This nurse provided us the support we needed to stay informed about his care. I can tell you that he had multiple doses of epinephrine and dopamine. I watched his nurse pushing a large syringe of albumin into his tubes. I watched as he was intubated and as the attending physician from the PICU pumped air into his lungs.

Soon they had planned to transport him to the PICU, so we were ushered out of the room. This was around the time of the morning shift change, and I remember standing in the hallway waiting for his gurney to travel down the hall. In a matter of moments, our nurse friend who was to have been his nurse that day ran up to us with tears in her eyes ready to hold us. She and another nurse friend escorted us down the stairs so that we could meet Caemon at the PICU. Once we made it there, we were taken to a waiting room, and Caemon was wheeled into the PICU.

We were visited there by our nurse friends, then some doctors from the PICU who were hoping to get Caemon stable. Then the radiation oncologist showed up, and she was ready to bring Caemon in for his radiation as soon as he was stable. Everyone who came in had something slightly different to say, but the hope was still there that he would stabilize, that he would make it.

And then came the attending physician for the PICU. She sat with us and began to explain that she didn’t know whether they would be able to save Caemon and if they did, she didn’t know what shape his brain would be in, whether he would have any kidney function. I remember shaking as I took this in, and then she told us that children who were as sick as Caemon was don’t typically survive what he had been through. He had bleeding in his lungs. He didn’t have any platelets to speak of to stop the bleeding. He wasn’t doing well. I made her promise that she wouldn’t come in to announce his death, that whatever happened, we needed to be there.

A few minutes later, a nurse came to get us to see him. I think we tried to sit and watch (people kept giving us chairs), but the chaos around him was too much. By then our social worker was asking us to come with her. There was a quiet room where we could be. And then what seemed like seconds later, the doctor came back to tell us we needed to come in now. On our way, she told us she didn’t think they could save him, that the next step would be chest compressions but that this would be incredibly traumatic to his already traumatized body. We knew it was time.

When we entered the room, the doctor asked, “Is that his real blood pressure?” It was something like 21/15. “Yes,” was the reply. The doctor told us that if they stopped breathing for him, his heart would stop, that he would die, but that he was essentially already gone. Jodi and I could see this. Our boy wasn’t in that body. All that was keeping him alive at this point were the huge amounts of drugs making his heart pump artificially and the nurse who was manually pumping air into his lungs.

We looked at each other, confirmed that we agreed he was done, and we asked them to stop. They cleared the room of extraneous people, and we took our positions at the side of our son’s bed. They stopped the air pumping. They turned off the monitors. Soon, all around Caemon’s bed were his caretakers: his bone marrow doctor, an oncology fellow who had been with us from the beginning, his beloved child life specialist, our dear social worker, and two of the best, most lovely nurses at UCSF. We all stood by his side while Jodi and I told him our goodbyes. We did this for a few minutes watching as he no longer breathed, no longer moved. The oncologist took one of Caemon’s own stethoscopes from his IV pole, the red one I got him as a special BMT gift, and she listened for his heartbeat. After a few moments, she shook her head and burst into tears. We all did. Our beloved Caemon had died.

In the minutes following his death, we held Caemon, had some last moments as a family, and said our goodbyes. We went back to the special waiting room where we received Caemon’s caretakers for several hours, and some of his caretakers stayed by his side while people came to say goodbye to him. I have written about the care that followed his death. It was beautiful and honored him so well, and when I made one last visit to see my little boy’s body one last time, I was honored to see him so loved.

In the days and weeks following his death, we have come to understand a lot. Perhaps the hardest to accept is that he had been dying for a week and a half. His disease, we learned, was just too aggressive. His oncologist shared with us today that at the time they learned about his relapse, the level of his mutation in his body was back up to the level it was when he was diagnosed. It was as though he had never received a transplant at all. The disease was likely in his lungs and most certainly in his spleen and his liver. He had very active CMV and possibly other infections, and because they had done such a good job of helping him with each of his symptoms, it kind of didn’t seem like he was dying–not if you were looking for the miracles. The cold reality was, however, that his poor little body was so consumed with this incredibly vicious form of JMML that he was never going to make it. Those last cards the doctors were playing may as well have been thrown into a fire.

But we had to try, didn’t we? We had to believe that our boy could do this, that he could be a miracle or a breakthrough, and with that belief, we made the quality of his last days the best we could. We laughed; we read books; we snuggled; we spent time as a family; he even drank his favorite tea and ate nachos and a British Kit Kat.

I also know now that Caemon didn’t die in the PICU. He died as he left the arms of one of his favorite nurses to be placed on that gurney. That flailing he had done in my arms some time earlier was a boy trying to make sense of why he wasn’t staying in his body. There was a moment once the code had been called when I reached over to touch my son’s foot, and I remember it being the strangest sensation. He wasn’t there. I take comfort in knowing he was already gone, that the reason it took so much effort to keep his body working was that his body was simply done. Caemon may have been only three, but he was a boy who knew what he wanted and when it was time to go. I am grateful for that.

It is terribly hard to know that his disease was always going to win, that we were never going to get ahead of it, that despite his own strength, our boy was never going to overcome it. We will forever be brokenhearted over the loss of our precious son, but we also know that everything that could have been done for him–medically, spiritually, emotionally–was done. Of that we are certain.