September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics.
By Alison Hopkins
There is nothing like it, the sweet smell of your babies! I would bask in the scent of my boys every chance I got. I knew they would morph into teenagers soon enough and wanted to savor their sweetness before hormones took over.
I remember bragging that Kaden was such a sweet boy and insisting that others smell his beautiful noggin. His nurses, with surprise, would agree with me. My sweet boy.
Kaden on the right with his little brother B
The rain would not let up, it felt like we hadn’t seen the sun in weeks. Nothing was blooming, everything was gray. I felt gray. Kaden was on hospice and the rain made it worse, if that was at all possible. I needed to see the sun and Kaden needed to be outside. He was antsy and the whole family was stir-crazy.
Hospice is like living on “pause.”
Waking to the sun was like exhaling! Sunshine! Kaden sat on his dad’s lap while I took a shower and his little brother, B, toddled around outside. When I got out of the shower, Kaden was in his room and was a little agitated. I opened the blinds in the room and looked at him. “It’s a beautiful day, Kaden, a beautiful day.” I knew what I was saying. I leaned over and kissed his head. There was no sweet smell, nothing.
I scooped him up to calm him and carried him to the couch, cradled in my arms. We, my husband and I, held him and comforted him as he took the last breath he would take. We held him, changed him into a new, clean outfit, and brought him to the funeral home workers outside when we were “ready.” (I refused to let them into the house, to take my baby. It was my last decision as his mother.)
After taking a few minutes to compose ourselves and to just be together as his parents, we walked outside and were amazed. Everything was blooming! Everything! The irises were amazing, almost as if they burst because they couldn’t contain their beauty anymore. And the perfume, it was so fragrant! The perfume smelled exactly like Kaden.
Kaden and Company
Wherever he went, he was welcomed.
Kaden David Hopkins
12/3/01 ~ 4/27/07
Ph+ ALL (diagnosed 1/8/07)
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Alison wrote these words to me separately, but I have included them because they struck me with their potent strength:
” . . . what I wrote about was probably the clearest day I had experienced since [Kaden’s] diagnosis. I hate cancer and what it took from my children, my husband, my family. If I had to do it all over again, though, knowing what I know now? In a heartbeat. Maybe my pain is a measure of my love for him, my attachment to him? Whatever it is, it also makes me a better mom, wife, mother, and friend. I know how very dark it can be and this makes me enjoy the light so much more.”
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September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics.
By Lisa Jacobs Gurevitz
“Your daughter has a mass in her brain.” That’s me. That’s us, our family, living, laughing, loving and crying our way through our younger daughter Mia’s brain cancer diagnosis since November 2011. “How do you do it?” we are always asked. We just put one foot in front of the other and breathe in and out all day long. And it sucks, it really does.
We go through the routines of our daily life, sometimes with forced enthusiasm, sometimes with authentic smiles and we press on. We can’t return it, ignore it or forget about our unwanted family member, Cancer.
Along with cancer, come its aptly named cousins anxiety, stress, and fear. The anxiety we see in Mia, in my husband Dan and I, how it affects our older daughter Rachel, is woven through the blanket of our lives and comes with us everywhere we go. I wish I could say this blanket is cute and cozy and comforting. Instead, it is heavy, cumbersome and ugly.
These unwanted relations are not going anywhere anytime soon. For Mia, 5 1/2 years old and just starting Kindergarten, it is very apparent. We see how anxiety has crept in and taken hold of so much of her life. Crowds, loud noises, any change in routine, it has shaped her and how she goes about life. She gets stubborn, scared, controlling, sometimes irrational. I won’t get into details, but Mia has had several anxiety attacks that have resulted in ER visits.
Positive vibes only, indeed.
One visit resulted in my close to refusing the standard tests they do for oncology patients. I knew it wasn’t tumor or shunt related. The ER doctor looked at me like I was crazy when I told her it was an anxiety attack. When you see your daughter hyperventilating in a restaurant from the smell you know why and you never forget that image. Now don’t get me wrong, she is sweet, feisty, loving and hilariously awesome. But it’s sad to see how this disease manifests itself in ways you wouldn’t imagine.
For me, well that’s a whole different story. Each time the phone rings when the kids aren’t with me my heart races, palms sweat, my hands get shaky and I say, “Shit. What now?,” either out loud or to myself. Until I see who is calling, I always assume it’s school or camp or a call from wherever Mia happens to be telling me there is an emergency.
When I am out in public attempting normalcy by meeting a friend for coffee or shopping at Target I forget my words, lose my train of thought, drop things. It’s comical. And pathetic. I get so overwhelmed sometimes that I retreat and need to be home and don’t want to put that brave face on and do the things that come so easy to others. I can shut out the world if I need to, except my phone is always on because I am perpetually waiting on that call I mentioned above.
This is how we roll, always ready for a trip to the ER, always having to be flexible with plans, always planning our days around what is best for Mia, how things work with her schedule, carrying ‘barf buckets,’ and changes of clothes, and anti-anxiety meds, and a host of other things.
My husband and I enjoy the music of The Grateful Dead. I have for much of my life, as has Dan. When the band announced their Fare Thee Well shows I so badly wanted to go, but knew it would never happen because getting out together, especially for more than a few hours, is difficult. We have some great friends and family members always willing to watch the girls, but we just never know how Mia will do no matter how comfortable she is with whoever watches her.
We gave up on going and planned to watch and listen via satellite. It turns out that we were gifted with tickets to one of the shows, in a suite no less (extreme gratitude to E & S). We were able to make it work with a split shift of sitters (thank you A and M) and off we went. The whole time we were gone I was so certain something would happen and we would have to leave, I almost worked myself into a panic attack.
The show was amazing, and even though we checked in a few times every hour Dan and I were able to enjoy ourselves and take it all in. We got to experience a rare weekend night out, enjoying our favorite music and at the end got to breathe a huge sigh of relief that no emergencies arose. So rare, so simple, so grateful.
Dan and I find comfort in knowing that we are the only ones that truly get this story of our family, riding out the unknown and scary ocean that is our life. And we should cling together more in our little lifeboat instead of sometimes wanting to push each other overboard. The toll cancer takes on a family is vast. Our older daughter Rachel (4th grade) suffers too. We try to do right by her and for her and yet we feel like she always ends up with the short stick of being a sibling navigating these waters.
Mia and Rachel, sisters.
How is Mia doing these days? If you look at her she seems like any other kid her age, albeit a miniaturized version. She’s happy, she loves camp and school, her dance class, her friends, snuggling, emojis and frozen yogurt.
At the end of July, we learned that after a year of stability on her fifth chemotherapy regimen followed by six months for off-treatment stability, there has been tumor progression and she needs to restart treatment. The sixth regimen is being taken via g-tube, which makes it so much easier to administer for both Mia and us. And insurance approved it all after a long delay.
Beauty and cancer. You wouldn’t think they go together, but they are related. Cancer shows you what this is all really about and what matters. And what doesn’t. Perspective changes as do we.
Mia and family. Photo by Flashes of Hope
Mia is thriving in her own way and we see the beauty in all of this clear as day. Yet on super awful days we are still thankful for what we have now, because one day we may be fervently wishing and hoping we could go back to these easier days. So twisted, so sad, so true.
Without love, day to day
Insanity is king.
J. Garcia/R. Hunter
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This is an update to Mia’s Story was first shared in 2013. You can read that post HERE.
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September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics.
By Kelli Tracy
It all started with a hat. A simple baseball cap. Unassuming, tan, a yellow sunshine on it – front and center.
The casual observer would think little of seeing it now. Some might know where it came from and wonder. Wonder about the young man currently wearing it. Did he…?
No. He doesn’t. But his brother did.
Let me tell you about this cap. This beautiful cap full of memories and joy. Full of love. Full of sorrow. So much in one little hat.
My oldest son, Matthew, loved Camp Sunshine here in Georgia. That’s where he got the baseball cap. I can’t remember which summer it was given to him. Doesn’t really matter. It was one of four summers he attended.
Have you heard of Camp Sunshine? It’s an amazing organization that holds its very special camps at an equally amazing facility. When the kids go there, they are with other kids who know how they feel, what they’ve been through, what they are going through. They feel normal. They get to do cool things like rock climbing, horseback riding, cooking, crafts and so much more. They stay up late and giggle. They sing songs and swim. Special people come to see them like the UGA football team.
These kids all have one thing in common: they have cancer.
It’s hard to send your child off to camp for a whole week. Without you. I think it might be even harder when your kid is medically fragile. Matthew never thought twice about leaving us behind each of those summers. He honestly thought one week wasn’t enough. Can you blame him? A vacation away from nagging, overly protective parents…yes, please. He always came home seeming so much older, and more independent. Such a wonderful transformation.
The hat. It’s seen so much.
The hat visited Hawaii – we went with it. In June 2008, we were blessed to have Matthew take us on his Make-A-Wish trip to Hawaii. Wasn’t that generous of him? That hat with the yellow sunshine on it was worn all over the place for 7 days. One of my favorite photographs of Matthew is of him, sitting on the beach in Waikiki in a hole he dug in the sand. He’s looking over his shoulder at me – wearing the hat.
Matthew in his hat on that Hawaii beach.
The hat was worn on at least one occasion to the infusion area at the local children’s hospital where Matthew received chemotherapy treatments just after his 13th birthday.
Matthew had a brain tumor. For nine years. Yes, had. It didn’t go away, but Matthew did. Less than a year after the Hawaii trip, Matthew passed away.
Back to the hat. It means a lot to me. But something else means even more to me.
My son, Cameron, recently wore the hat to a local nature camp. He wore it almost every day and it was all I could do to let it out the door on his blonde head. You see, the thought of losing it was overwhelmingly scary to me. I had to remind myself that memories are not in “the things,” they are in my heart and soul.
Matthew’s younger brother, Cameron, wearing the hat.
Wearing that hat brought Cameron joy – and kept the sun off his face. Both important. More important than worrying about whether the hat would come back in the door on his blonde head.
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If you would like to learn more about the good works of Camp Sunshine, click HERE.
If you don’t want to miss a single entry in the September Series, consider subscribing to my blog. Here is how: Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.
Mary Tyler Mom 