Recently, I had the distinct honor of joining Brizo, the fashion forward faucet company, and the rest of the Blogger 19 for a day at St. Jude Children’s Research Hospital in Memphis, Tennessee. In the last three years, several alumni expressed an interest in seeing for themselves the who, what, when, where and behind-the-scenes of how Brizo manufactures their products. During one of those conversations, I suggested uniting the designers and bloggers from all the Blogger 19 trips Brizo assembled by putting put our big mouths and fast fingers to good use with a visit to the Memphis healthcare facility.
Creatives are often temperamental, and being familiar with one of the hospital’s main fund-raising channels – the St. Jude Dream Home Giveaway – I thought calling on the group’s collective better angels was the next right thing to do. Imagine my delight to see 78 willing participants rise to the challenge of a spending a day at St. Jude!
To be honest, there was an element of selfishness behind the idea. I was aware I required some sort of swift kick in the pants, but unsure of the form it would come in, and hoped Dream Home sponsor Brizo would help provide the answer with a trip to St. Jude. Little did I know how well their team listens. Maybe that’s what makes them so good at what they do.
Buckle up, because this is a long one. Don’t say I didn’t warn you. Y’all. Read the book, then watch the movie. There’s a movie at the end, so stick around.
When the invitation to join Brizo in Memphis on July 16-19 hit my mailbox, I didn’t hesitate to RSVP. I had no idea what my purpose was for this trip, but I was clear about my intention. I wanted to be used, needed, valued, educated. It didn’t matter how, it just had to happen, so I hit the road with an open heart and mind, curious to see where the wind would take me.
In the early morning hours of July 17, more than 80 of us boarded buses bound for St. Jude. There was a collective need for caffeine among our ranks – addicts are usually cranky without a fix – but we soldiered through on our best behavior. We behaved. I swear. It was that kind of day.
Brizo kicked it off by describing their role with the Dream House, followed by a group from ALSAC, the fundraising arm of the hospital, and another from St. Jude. Finally, a whole-family team leader, a pediatric oncologist, and a patient with acute lymphoblastic leukemia, along with his father and brother, took the stage to tell us how it feels to walk in their shoes. Not fun.
We learned a lot about how St. Jude operates before ever setting foot inside the door, then were split up into small groups to tour the hospital and living facilities, and to interact with patients and their families. My group leader’s name was Mary Grace and, wow, did her mother pick the right moniker for her!
From her comportment, I correctly guessed she’s an Ole Miss grad – they stand out – so…yay, a point for me! (I’m also pretty sure she’s a member in good standing with Delta Delta Delta. It’s a killer combo, you know.) Mary Grace politely suffered our interrogations and penchant for getting lost behind a camera lens with all the ease, manners and lady-like charm that her name implies.
Mary Grace. I’d love to have a 10th of whatever it is she’s got going on, because she’s got it going on.
Anyway, when it was our turn to spend time getting to know the people St. Jude serves, it was mid-day and there were few idle patients around. Scheduled to go downstairs with another group for an art project, I was told to go upstairs instead. There, five of us sat at a round table, just waiting and creating until a sweet family of three came along. Honestly, I think they felt sorry for us. It was a long, good, hard, but ultimately uplifting day.
Mary Grace told me in an average year, over 14,000 groups like ours tour the hospital and the guides manage to pull it off with very little disruption to their patients or their mission. I was very impressed by that but, at the end of the day, I still hadn’t put together the pieces of my mission. What made me suggest the visit; what made me RSVP for the trip?
There was a big cocktail party planned for that evening I had every intention of attending. Really. I did.
When we returned to the Peabody Hotel that afternoon, I peeled my contacts off my eyeballs and laid down for a few minutes to rest. The next thing I knew, it was almost time for the party and I wasn’t ready to go. I plugged in the iron and hurried to paint on some semblance of a cocktail worthy face. I grabbed my top and ran to press out a few wrinkles and the iron spit out brownish water all over it. I didn’t have alternate attire so decided to call it an evening.
Rumor – and the odd incriminating photo – has it that the party was still hopping in the Continental Ballroom into the wee hours:
In the time I now had free, I pulled my thoughts together and realized the purpose, the reason…my reason, my mission on this adventure: To share two stories with you. Plus mine, I guess that makes three. Math.
Why me? Because if you take out having child with cancer, I have walked in their shoes and in telling you their story I have to tell a bit of my own. I don’t do that for just anybody. I can’t fix it for them, but I can share what I know about what they’ve been through.
Hey! I’m a parent. I know how scary it feels to have a really sick child, because I had one too I mean two.
During breakfast that morning, the young patient who took the stage didn’t want to talk, so his father did it for him. Quite masterfully, I must say. It’s been my experience that when a father gets to the waterworks stage everyone else goes right along with him, and there was no exception on that day. The patient, his son, is a boy of 10 or 11 with acute lymphoblastic leukemia (ALL), a cancer of the blood.
Hey, Cancer. You dirty bird. I know you. We’ve met more times than I’d like, you F’er.
Unlike most of the people at St. Jude, this family lives in Memphis and the boy’s father explained that when what seemed to be a simple but persistent and resistant sinus infection was finally diagnosed as ALL, their pediatrician put a team at St. Jude on alert. They arranged for someone to pick up his twin brother from school and headed straight to the hospital. Within 24 hours, a treatment protocol was established and activated.
Did you get that? It’s important. 24. Hours. No waiting.
That was a couple of years ago. He’s been in remission for a year, forever under a doctor’s care, but ALL wasn’t the only thing that needed to be treated. Mom and Dad needed help too. They had to learn how to deal with the new normal, how to function as a unit with one very sick child, and how to parent a twin brother who was scared to death and needed them to show up for him too.
Hey, twins! I have twins. They were so close one did the other one’s homework. Until the third grade. I get how hard it would be.
Medical care, soul care, family care. St. Jude took care of it. Attended to it all. Every last detail. Down to the tiniest thing. And expenses for food, hotels, and childcare! I forgot about those. Guess how much it cost this family; how much it costs every family?
Nothing. Nada. Zilch. Zero. Nechevo.
Hey! My twins came early. Too soon and too small and too sick. A boy and a girl, the doctors only gave her 50/50 odds of survival. She had serious heart and lung problems. That was my not fun. The only reason it didn’t scare the shit out of me is because I was in shock. The fear kicked in later. Yesterday, maybe. Me, with two tiny, tee-niney, itty bitty sick babies. Dear God, are you there? It’s me, Kathy. This isn’t funny. It isn’t fun. YOU NEED TO FIX IT.
Two NICU beds, two neonatologists, two personal nurses, two ventilators, two gastro tubes, hardly any diapers because they were always naked…I could go on and on because there was SO MUCH, but let’s stop at two hospital bills covering over six weeks of intensive care. What an intensive bill that was. In the 80s. Yep. All that and bad hair. I win.
I can totally imagine how comforting it is not to worry about anything other than loving your children hard. What a gift St. Jude provides!
I am going to keep that family – parents, grandparents, extended and by all means those twin boys with their same-same good looks – close to my heart for as long as it beats.
And this family, too: The family of three I mentioned way ^up there^ way, way ^up there?^ The family of three that felt sorry for the lonely designers at their sad designer round table?
They were only a family of three at the hospital. They are a family of five everywhere else. Dad went to St. Jude alone when their middle child was diagnosed with a brain cancer. They didn’t say, but I didn’t have to ask. The railroad tracks running down the center of their two-year-old daughter’s tiny skull told me everything I needed to know. Well, not everything, but enough.
Cancer is a mother. Whether 29 or 99, a mother gets hurt; a father gets hurt; a brother gets hurt. A grandmother? I don’t want to know. People hurt. F’ you and the horse you came in on, f‘n cancer.
I guess what I was meant to do was listen…let that beautiful young mother who felt rumblings of guilt because she wasn’t at St. Jude in the beginning; guilt because she was 1000 months pregnant with her third child when her daughter was diagnosed in March; guilt because her oldest child was doing the second half of kindergarten without Mom – shouldn’t Mom be there? – guilt because she may have missed her newborn’s first smile…just listen and let her say it out loud, knowing that she isn’t a bad mother at all.
She is the best, best kind of mother.
One happy to be going home the next day, happy to be a family of five – a mother of three! – again for two whole weeks. Only two short weeks that are now half gone, she seemed so grateful for the time. She is the keeper of the clock between the last round of treatment and the next, patiently waiting for a cure; learning to navigate her heart while trying to hold herself together, but finding out how little she controls.
She is the mother of all mothers!
This is how I know a little about how she feels: Like her, mine is a family of five that sometimes looked like three. Like her, my children were very sick. Like her, I was too overwhelmed to be scared for too long. Like her, my oldest child had a birthday while my babies were in the hospital. Like her, it felt wrong to be celebrating, or doing anything really, while they lay isolated in their tiny glass beds with children losing their fight around them.
It probably would’ve felt worse not to celebrate because, like her, I am the mother of all mothers and we celebrate life! Unlike her, there was no support system in place for the families of sick kids. There was no where to sleep, no place for R&R. How I needed the services like the ones offered at St. Jude. Bad. I just kept moving until I crashed.
Her sweet, sweet husband did the first part alone; exchanged important things for critical ones. He is a man among men; the father of all fathers; a man of great wealth in the only way that really matters. Something you can’t buy with cash money – I loved the way he smiled at his girls!
My take on parenting so far is that it’s only when we don’t feel at all that we fail our children, not when we feel too much. Never when we feel too much. Okay. Maybe I’m wrong about that. I may have felt too much and failed a little at the same time. As parents, we all fail a little, but I bet it’s not as much as we think!
Because Brizo heard me and because Mary Grace lived up to her name and because of these two families, I present you the facts I committed to memory about St. Jude Children’s Research Hospital:
- It was founded by Danny Thomas in 1962, in keeping with a pact he made with God.
- He chose to locate it in Memphis because it was the first southern U.S. city to integrate it’s hospitals.
- Mr. Thomas was one cool cat.
- In 1962, only 20% of patients lived to see a cure.
- Now the rate is 80%.
- That’s a big jump in 50 years.
- It costs 1.7 million dollars a day to run St. Jude.
- 75% of the operating costs come from private donations.
- The average donation is $31.00.
- No family ever spends a dime on treatment.
- It costs about $500,000.00 to treat a child with ALL.
- St. Jude treats approximately 7,800 patients a year.
- No family ever spends a dime on treatment.
- Researchers from 100 countries, of every religious and ethnic background are working to find a cure for childhood cancers, sickle cell anemia and HIV/AIDS.
- If your child has one of the diseases they specialize in, they take him/her no questions asked.
- They have cared for children from all 50 states and nearly every country around the world.
- There is no red tape.
- No matter the God you pray to.
- ALSAC stands for American Lebanese Syrian Associated Charities.
- I had to look that 2nd A up.
- I really remembered everything else.
- I bet they find a cure for a lot of other things along the way.
- These scientists also develop the majority of protocols used in treatment.
- The hospital only spends $28mil a year on outside pharmaceuticals.
- That’s about half as much as my HRT.
- I kid, but it isn’t cheap!
- No family ever spends a dime on treatment.
- There are only 78 inpatient beds at the hospital.
- You don’t want one of those beds, but if you need one the rooms are as beautiful as a hospital room can be.
- I hope you never need one.
- Everyone else is housed is one of the beautifully designed residences on campus.
- Most of the public spaces within the residences are designed in conjunction with a fortunate someone who wants to give back.
- Okay, mostly famous people.
- There is a school for the patients and their siblings, so that no child has to deal with being sick and losing their way.
- Families receive a stipend for everything from clothing to travel expenses to food to laundry detergent.
- I hope you never need that stipend.
- 81% of every dollar goes toward the cost of treating a child.
- That equals 1.377mil a day.
- That’s a lot.
- No family ever spends a dime on treatment.
- There is more, but that’s all for now.
- It’s enough to get you started.
- Enjoy the show, then check out the links below.
To learn more – there is so much more! – visit St. Jude.
Do me a solid? Help spread the word by linking, copying and pasting, or posting this video highlighting the Brizo Blogger 19 experience at St. Jude.
We all take something different away from each experience. I would love to hear your takeaways. Be sure to share your thoughts in the comments below!
Disclosure: Brizo provided me with accommodations and some expenses relating to food and travel during my stay. I was not paid, nor asked to offer, any endorsement in exchange. As if I could ever repay them for an experience like that. Never. Ever. Thanks, guys!