Keep Samantha Smiling
$3,820 of $5,000 goal
"I feel so badly for all the people with cancer… even me."
Samantha Bannister's first seven days of radiation (and nine days of chemotherapy) went well: she continues to sleep soundly, her appetite remains healthy, and she has yet to vomit. Better yet, her blood work was excellent, her levels being where the doctors like to see them. All of this is new, of course -- and the worst is yet to come -- but we'd be ungrateful weirdoes if we didn't appreciate what we've got… even (and especially) if it's fleeting.
The medical professionals working with Samantha are truly remarkable. Drs. Kurt (oncology) and Buth (radiology) of Lemmen-Holton Cancer Pavilion have been helpful, informative, and understanding. Just as importantly, they've listened -- listened to our fears, our hopes, and our plans. The nurses there have also been cool. A few of them made Sami a Doctor Who and the T.A.R.D.I.S. calendar for her radiation appointments, and one of them even painted her mask to look like Pikachu from Pokémon! Then there's the truly amazing people at Mary Free Bed Rehabilitation Hospital! Dr. Kaldanek (therapy) and her team of nurses and therapists seem to specialize in the (seemingly) impossible! Every day they're working Samantha really hard, teaching her cool ways to maximize her movement and independence, and she's making new friends along the way -- even if some of her nurse pals wake her up all the time for vitals! Sami's really doing great, and she's surrounded by truly great human beings.
Speaking of great things: just this week, Samantha got some therapy time in the pool! Even cooler -- if there's anything cooler than the therapy pool! -- Samantha asked yesterday if it would be okay for her to use her cane when out-&-about, reserving her wheelchair for whenever she's too tired or having to do some long-distance traveling. As it stands, there's a super-cute little red cane propped by the corner of her bed…
Last night, as I was getting ready to head home, I turned around in the doorway and asked Samantha, "How do you feel, baby?" After thinking for a moment, she looked at me with the hugest smile and said, "Life is awesome, Papa." There are so many things in this world that I don't understand, so many things that worry me, that leave me tossing and turning in my sleep; but there's nothing so comforting as seeing stars shine brightly in the darkest of night skies… and nothing so awe-inspiring as the moment I realized there's no star in the universe so radiant as the one twinkling in my daughter's eye.
With love & laughter,
"Papa, what will my life be like with cancer? I need to know the truth. It's my body, and it's my life. I promise I won't get too sad... I can handle it."
(This one is dedicated to all those parents terrified of openly & honestly discussing "the birds & the bees" with their children.)
Today marked Day 1 of Samantha Bannister's chemo & radiation therapy. She is undergoing Intensity-Modulated Radiation Therapy (IMRT). The total dose of radiation she will be receiving is 56 Gy, or 5,600 cGy. The doctors have indicated that this is the maximum amount of radiation they can safely give a child, at least when the emphasis is upon quality (over quantity) of life. As for the chemo, she's prescribed one 100 mg capsule of Temodar every 24-hours. She'll be taking it every night before bed, an hour after she's taken Zofran to offset nausea from the chemo. All of this on top of the Lovenox shots she gets in her belly (two every day) for the blood clot St. Mary's discovered in her leg, the Decadron (a steroid) for brain swelling and inflammation, the Neurontin for her seizure-like episodes, and the Tizanidine for muscle relaxation...
... so how she manages to rock the daylights out of physical, occupational, and speech therapy is entirely beyond me! (Samantha's even doing schoolwork, for crying out loud!) Every day she's learning new things, all of it aimed at maximizing her independence. She's learning to walk with a crutch, how to safely get in and out of bed, even how to dress herself with the use of only one arm and leg. It's a lot of work! In fact, to prove how hard it is, Samantha required that I only use my left arm for a day! We drew pictures together and we worked on our alphabets. It wasn't easy at all, and I'm ambidextrous… oh, yeah, and I'm not riding the pharmaceutical dragon Samantha's soaring on right now! It's mind-boggling!
Then came the question: what will my life be like with cancer?
Samantha insisted I be honest, and she assured me she could handle it… but I'm not her. "It's my brain… it's my body… it's my life, Papa, and I need to know the truth." I was honest with her about therapies, medications, and possible surgeries in the future. We talked about alternative treatments, the possibility of traveling out-of-state to other hospitals, and even palliative care. But most importantly, we talked about hope, about family, and about love. And we talked about survivors, people who refuse to be defined by cancer, choosing instead to define themselves and to live life to the fullest. I assured her that everyone promises to do their best, as a team, and that the remainder of our lives are dedicated to making her (along with her brothers and sister) the happiest kid on the planet.
By the end, I was a visibly broken man. With tears flowing down my cheeks, my face red from holding in a firestorm of emotions during our talk, I looked at her and said, "I wish I had a genie to make it all go away… but mountains don't just move (there's a lot of hard work required)… and people don't have magical powers. I can promise you only this one thing, sweetheart: that all of me is for all of you, always and forever." With the gentlest of expressions on her face, she raised her left hand high in the air, whispering, "You look like you need a hug from me." That's when I lost it, spending the next few minutes weeping on her shoulder. Once I gained composure, she whispered, "It's okay, Papa. I trust you with all my heart, and I feel safe when you're near me."
This girl is way... beyond... me.
The Byron Fun Spot is my favorite place to go on Saturdays and Sundays. I always go with my dad (Jeremiah Bannister) and my sister Teresa because my dad is a deejay there. I can't go right now because I'm in rehabilitation at Mary Free Bed but I'm doing my best every day in therapy so that I can skate again someday! Skating always makes me so happy and I really love all the people there. They're my friends and I miss them so much! Ohana!
My dad asked me what song I wanted to hear at the rink and I said "Tiny Dancer." I really like Elton John because his music is so beautiful. This song has helped me a lot to be happy in the hospitals and I hope it makes you happy too.
#TeamTinyDancer #Ohana #rollerskating
I just want to say that I am really happy to see how many people are donating. As mentioned above, every little bit helps. The Bannister's are going to need help for a while. This money may be used for child care, meals, and other expenses they haven't anticipated. What a great network of friends they have