Tag Archives: St. Baldrick’s

the beauty of bald

In eleven days’ time, I will be waking up bald in a Las Vegas hotel room. While that may sound a bit like I’m about to be the victim of some urban legend, this will, in fact, be by choice. I will be shaving my head with a group I have wanted to join for three years now: The 46 Mommas. This is a group of cancer moms who raise significant amounts of money for St. Baldrick’s through annual head shaving events. They are fierce and brave and strong and singularly motivated to end the disease that has impacted their children and far too many others. They are clearly my tribe.

No mother ever expects her own child will become that beautifully bald cancer poster kid. I certainly didn’t. I couldn’t imagine my son without his hair, but that baldness became our reality. Caemon was that child. He still is.

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The night of Caemon’s diagnosis, that first night we ever spent in a children’s hospital, I remember the hematologist complimenting Caemon’s hair. He couldn’t get over how beautiful it was. And it was beautiful–like corn silk kissed with sunshine. But I also remember wanting to tell this young doctor that he couldn’t have it, as if my protective mama bear instincts were any match for chemotherapy. I  remember that night telling my brother that as soon as Caemon’s hair started falling out, I would shave my head. He agreed that he would too. I felt a tiny spark of power in that decision on a day when I had never felt more powerless. But the head-shaving was not to be.

When Caemon’s hair did start falling out, he had what we called his “hospital haircut.” We opted to shave his head to keep the falling hair from annoying him. I offered at this time to shave my head too. After all, we had the clippers in hand, and I was ready. When I said, “Caemon, what if Mommy has a hospital haircut too?” He yelled at me. “No! I don’t want Mommy to have a hospital haircut!” I was a little surprised, but then I shouldn’t have been. Caemon had a thing about wanting me to look a certain way. There were days when I would come in from staying the night at Family House, and he would point at my various accessories: “Mommy! Take off your scarf and your headband and your jacket and your purse and your glasses!” I think he wanted me to look simple. like I did on our days at home, maybe even disheveled. I think he needed the comfort of a mom who wasn’t going to change in the midst of a world that was so unpredictable; the only constant there seemed to be change. And a mommy with a shaved head was just too much. He needed normalcy. His own freshly shorn head was too much already.

So I didn’t shave my head, but I did watch as my son’s IMG_8023haircut became less a haircut and more the signature look of a child with cancer. At first he still had a bit of stubble, his beautiful widow’s peak still framing his face. He had eyebrows and his glorious eyelashes too. But after a couple of months of his most intense chemo regimens, all of his hair was gone. He looked like a cancer patient.

Caemon didn’t like being bald. He didn’t recognize IMG_8402himself. One of his favorite nurses was a brilliant caricaturist, and he drew Caemon a portrait one night, complete with his bald head. Caemon, in a rare turn from his usual polite self, threw the picture and had a fairly epic meltdown. Later, we gathered that he didn’t like himself bald, and he confirmed this. (This same nurse would later draw a picture of Caemon with a full head of hair in our guest book at his memorial service.) There were times Caemon wanted me to take photos of him with some of the fancy machines that visited his room, and he insisted on putting a hat on for the picture. He needed so desperately to  look more like himself.

I would think abouscrubst the other kids we encountered in the hospital halls, the teenaged girls who had a much more established physical identity than my three-year-old son, and I know it had to be painful at times for them not to resemble their former selves. But there was a sense of solidarity around it too. When Caemon did finally get his first hospital haircut, we took him for a walk around the halls, and he saw other kids bald like him, and he would comment on their hospital haircuts. Some of his favorite nurses also sported bald heads, and he began to see them as kindrid spirits, asking if he could touch their heads. He needed that baldness to have meaning–not to represent illness and helplessness, but instead to symbolize something more important. His bald nurses were in control, so maybe his baldness could be power. When those nurses were in the room, it certainly was.

But baldness was still not acceptable for Mommy. I broached the subject of shaving my head more than once throughout Caemon’s treatment, thinking he might change his mind, and, selfishly, thinking it would be so much easier for my life in the hospital. He was always just as adamant that I keep my hair, and I respected that.

As strange as it may seem, after Caemon died, one of the clearest physical memories I had was of his bald head. It still is the most visceral, the most easy to recall. I kissed and stroked and held his head hundreds–maybe thousands of times–his scalp smooth, but slightly sticky. I can recall that sensation more easily than I can the feeling of his little body wrapped around me in a hug. It is at once comforting and heartbreaking.

So now, as I prepare myself for this shave, I find myself thinking that he might be mad at me if he were here. I try to imagine what an almost-seven-year-old Caemon would think. Maybe he would have gone with me. Maybe he would have shaved his own head too. Maybe, instead of being mad, he would have been proud of me. All I have are maybes, and then the memory of his protests. But I am still shaving in my son’s name, in his memory. I will say a quick hello to the clippers, maybe give them a little pat like Caemon used to do. And when I am bald, I will admire that my head is shaped like his was, and that my ears stick out like his did. And in my heart, I will stroke his sweet pate, give him a kiss, and remember why work like this must be done.

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Now, I humbly ask for you to support me in my efforts to raise some serious cash to help beat childhood cancer. St. Baldrick’s provides more funding to childhood cancer research than any other private organization. They directly fund the work Caemon’s doctors are doing with his cells, and they are committed to putting an end to childhood cancer. On a very special note, any donations to my fundraising efforts will funnel directly to Caemon’s Hero Fund for JMML research grants, and even the tiniest donation makes a significant impact. I thank you for helping me make my first shave with the 46 Mommas fruitful and memorable. To donate, you can click the link below: Timaree Marston’s 46 Mommas Fundraising Page

 

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The Caemon Marston-Simmons Hero Fund

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Today is Giving Tuesday, a day amidst all of the holiday bustle when people worldwide find ways to give of themselves. So today, we would like to share with you a way that we have been honoring Caemon, a way we can all give in Caemon’s memory.

Just a few months after Caemon died in 2013, I got in touch with a representative from St. Baldrick’s, an organization whose sole purpose is to fund pediatric cancer research, and I spoke with them about ways in which we could honor our son, one of which was a Hero Fund that would be directed to JMML research. In June of that year, Jodi shaved her head at our first St. Baldrick’s fundraiser, organized by Caemon’s uncle. A year later, we did it again, and this time one of Caemon’s oncologists joined us. With that fundraiser, we finally had enough to start our fund.

Today, we would like to unveil to you the Caemon Marston-Simmons Hero Fund. Caemon’s fund will provide grants specifically for JMML researchers as they continue to try to understand this disease. It is yet another way for Caemon to continue to make a difference, another way for him to live on.

But why should you give to St. Baldrick’s on Giving Tuesday? For us, this is personal in so many ways. You see, that same oncologist who shaved his head at our event last summer is also making some truly groundbreaking discoveries using Caemon’s own cells. You can read an article about the important work he is doing here: Rare Childhood Leukemia Reveals Surprising Genetic Secrets (note that the boy mentioned in the end of the article is, in fact, Caemon). His research is funded in large part by St. Baldrick’s grants, and his research is inspired in so many ways by our son. St. Baldrick’s continues to seek out the best researchers in pediatric oncology to ensure they have at least some of the funding they need to understand pediatric cancers.

We want to see an end to JMML–to all childhood cancers. We want these kids to have a greater chance at survival, and we know that supporting St. Baldrick’s is one way we can help ensure that happens. Please join us today in giving to St. Baldricks. Help us grow Caemon’s Hero Fund, and help us support these researchers who want to put an end to this disease.

Thank you!

The Marston-Simmons Family

 

Thirty Days of Caemon–Day Nine: Fundraising for a Cure

Do you get tired of being asked for financial donations to organizations such as the American Cancer Society, Leukemia Lymphoma Society, or St. Baldrick’s? Do you wonder whether the funds raised for cancer research ever reach the intended destination? Does it feel like your money just gets thrown into the giant maw of corporate fundraising? Well, we wondered these things too, and we were cautious about getting involved in large organization fundraising for these reasons. We wanted to make sure that any money raised in Caemon’s honor would go to the right parties, and for us, that meant funding JMML research. There was a lot to learn about each of these organizations and we needed to ensure that they were a good fit for us and our legacy work.

The same year Caemon died, we formed an LLS Light the Night team which raised $10,000 for blood cancer research. We had one of the largest teams at the walk, all of us decked out in our Team Caemon shirts showing off our Crocodile Pride, and carrying gold lanterns in Caemon’s memory. We were honored with the “Most Inspirational Team” award at the end of the fundraising season, a poignant and bittersweet moment for us personally as well as for the North Bay LLS crew who had grown attached to us and to our son. We continue to fundraise and walk with LLS because they are a tremendous organization that supported us when we were in the hospital and after Caemon’s death, but more importantly, we walk and fundraise with them because they are directly funding JMML research at UCSF. Caemon’s oncologist, Dr. Mignon Loh, is one of the world’s leading experts on JMML, and she oversees a lab full of brilliant people actively working to unlock the secrets of this type of leukemia. They are able to do their work because of an LLS grant.

Caemon’s Uncle Seth spearheaded two St. Baldrick’s head-shaving events with his fire department, one of which I (Jodi) attended as a shavee. Because of these fundraising efforts, Caemon is now an honored kid for St. Baldrick’s, and as such, serves as inspiration for other fundraising events. We were honored to send Croc tattoos and photos of Caemon to a bay area roller derby team who hosted a shaving event. A research fellow at UCSF, Elliot Stieglitz is the recipient of a St. Baldrick’s grant, and he has been studying Caemon’s cells since his diagnosis. Dr. Stieglitz’s work will be explained in a later post, but we firmly believe the work being done will lead to a better survival rate for JMML patients. We are extremely proud of him, and we will continue to partner with St. Baldrick’s and support his research.

Curing childhood cancer is not out of our reach. At one time, a diagnosis of Acute Lymphoblastic Leukemia (ALL), the most common type of childhood leukemia, was a death sentence, but today, because of research, children with ALL have a 90% chance of survival. Sometimes it is hard to see any tangible evidence resulting from all of this fundraising, but when I think about childhood cancer survivors, like Bat Kid, I am encouraged. There should be a lot more like him, leaving leukemia in the rear view mirror and getting on with the business of growing up. The stakes don’t get higher than that, and we are determined to see that happen.

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