Below is a copy of the letter I sent to Hannah's Doctor thanking her for the care Hannah received. It took me a long time to write and several versions before I had the confidence to send it. I'm sharing it for several reasons. One because I want you to know how incredible Johns Hopkins All Children's Hospital and all of her staff are. I want you to know how despite losing Hannah we hold them in the absolute highest regard. They were all simply fabulous. How we were dealt with is so important because everyone left everything on the field as it were, that gives us strength moving forward, free from bitterness and regret. I also have one for the amazing Jacksonville Proton Center but its not the easiest thing to write.
I'm also sharing because I want you to understand how its all the little extra things they do, the little acts of kindness above and beyond that had the biggest impact on us. I want people to understand how kindness fills the soul and how much power we all have within us to have a positive impact on someones day. Every traumatic memory we have is always accompanied by an act of kindness where through a simple gesture the pain of the memory is slightly eased. Remarkable really.
If you care for someone, or work in health care, or just deal with people on a general basis, never underestimate the power you have to leave a positive lasting impression on someone. Never take for granted the privileged position you hold. When life and work grinds you down, an it will at some point, always try and remember how much impact a simple act of kindness can have. All the little things we do for each other quite often have the biggest impact upon someone else. I hope the letter captures that.
Dear Stacie,
I have been meaning to write to offer thanks for the care we all received during Hannah’s treatment but time, life, and everything else seems to have got slightly in the way.
I know we have talked of this before but I want to start with the conversation I had with you just after the turn of the year in PICU after yet another trip to Surgery. I told you that the one thing we needed as a family was, regardless how things turned out, to have done all we possibly could for Hannah. We left All Children’s with our hearts broken but without bitterness and with a comfort we did do all we possibly could. I’m not sure people fully appreciate the power of this gift nor how much we appreciate it. It gives great comfort during these days as we adjust to our new lives without Hannah. All of the difficult decisions we had to make were with made with our hearts full and at each step we felt as informed as we could possibly have been.
We have learned many things over the past year or so. We have been taught immense lessons of fear and pain, we have learned hopelessness and desperation and we now experience sadness, loss and grief like we could never imagine. However, we have also experienced bravery and courage. We now know more about Love than we could ever comprehend, and we were inspired by many levels of defiance and determination and a will to seek light even in the darkest of places. We have also experienced the real power of kindness and how kindness offers hope no matter how small and how kindness, even in your darkest hour, will ultimately set a path back to happiness.
The latter we learned no more so than at All Children’s.
As we process everything we went through as a family at almost every stage and accompanying every memory there is an All Children’s friendly face, someone going above and beyond for us and a person doing all they possibly could for our little girl, and all the while treating us with the utmost respect and dignity. I can’t tell you quite how much this eases the pain of all of those memories. Kindness has a power to sooth the soul and it is a gift each and every individual at All Children’s gave to us all and we are so very grateful.
I used to think precision and accuracy were the most important things in medicine. I guess this comes with bias from my Radiation Oncology background. Regardless, I was so, very, very wrong. Each and every one of you demonstrated a confidence and skill set that reassured us many times that Hannah was receiving world class care at every step. But it’s not what you do that makes you all so special. More important than what you do is how you do it. How you treat people, the patience you all display and the seemingly natural way you all know how to react in every situation. The way you deal with the kids, their parents, and their families is what defines you as the very best of Doctors, Nurses, Nurse Specialist, Child Life specialists, Case Managers, House Keepers, Music Therapy, Receptionists and every single role in between. We were privileged and blessed to have received her care from the very best.
I often said to say to Kate how I would have loved to work at a place like All Children’s. Not for a desire to return to clinical work but more for how the Hospital operated. I’ve never seen such a happy and motivated workforce. Everything happened seamlessly. If we wanted or needed something, it seemed to happen immediately. Everyone was motivated and each and every person we encountered, at some point went above and beyond for us. The minute you walk through the doors you are greeted with warmth and respect and this continues all the way through to the moment you leave. You are all the very definition of Team work and I can’t praise you all enough for that.
I regularly saw the Daisy award and often thought of nominating people but quite honestly I’m not sure it’s possible for anyone to stand out among such a density of quality. It’s probably not feasible to award it to the whole Hospital but I would like to highlight a few moments and people I recall from our time if I may.
When I think back to those first few days they were a whirl wind of emotion and quite honestly a bit of a blur. It felt like we were introduced to absolutely everyone as the next few hours, days and weeks were mapped out for us. Throughout those early days on 7N we were nursed by Amanda and Greg. I’ll never forget the kindness they showed us and thinking back on it now I’m sure they were Nursing Kate and I just as much as Hannah. We were so far away from our families in the seemingly worst possible situation and they both helped us through it and set the tone for building a level of trust that would pass from person to person. I also fondly recall a conversation with Greg during the early hours of the night before her first surgery when in absolute desperation I felt I would never sleep again. Greg took some time out and said some words of reassurance and offered some advice – it was a small moment and I’m not sure he realizes the impact of that chat but it had a big impact on me and I thought of it often along the way. I guess it was the first steps of kindness we were to receive over and over.
It goes without saying the ‘Robots’, or Neurosurgery team, as they are more commonly called had a big effect on us. I would have preferred to have encountered them much less than we did but I am sure glad they were there. I recall the urgent return from Jacksonville after Hannah’s regrowth was found. The drive back was a huge stress and the night at home I spent most of it trying to find any evidence of what this meant as well as any evidence of it actually happening before. It was in a blur of emotion we headed to St Pete to see Dr Jallo. He has a unique ability within a five minute conversation to relieve all of your stress and make you feel as though you have just returned from an afternoon at a spa. It’s incredible really. We left content surgery was the correct call and that she was again in the very best hands.
I’m not sure how the team functions the way it does. They would walk in at 6.30am looking as fresh as a spring morning and walk in again late evening looking exactly the same. Quite honestly there are no words to convey my admiration for them all. We’ll always remember Dr Tuite and Christine every New Year’s eve, as they gave up their time for Hannah yet again. In a way I guess Hannah liked them so much she guaranteed every one of them had the opportunity to operate on her. She never once grumbled about having to go to surgery, a level of trust they should all be proud of. I’m not convinced they are actually human but they sure display the best of what makes us Human.
Speaking of Surgery, the team they have down there are incredible. Unfortunately we became a small part of the furniture but the way they manage to do their roles and also support terrified parents is incredible. Kindness oozes through that floor and the way they treat you is as important as Dr Jallo and Dr Tuite’s skilled hands.
I could write forever and a day about everyone on 7 South and I will talk fondly of them all for all of my days. Hannah never once complained about having to head to St Pete, honestly, I think she liked spending time up there. It’s not what they do, it’s how they do it. They are simply fabulous up there. Fallon has a breathtaking dedication to her work, she seemingly only has to think of doing something and it happens immediately. Perhaps she will appear in a Marvell movie one day. She sets the tone for everyone else and they duly follow, Bri, Lauren, Hilary, Cass, Amanda, Cassie, Megan, Shandie, Rebecca, Hilary, Shae, I could go on and on. They made it happy, they made it fun and they did it all with an intense level of dedication. Hannah loved them all and I saw they had a little soft spot for her. Bar teeth cleaning she would let them do anything. They went over and above for us time and time and time again.
Frustratingly I can’t remember the name of the Nurses with us on her last days but I would like them to know how grateful we are to them and we will never forget them. I’m not sure how they do it each day but we are sure glad they do. I’m actually happy her last days were up there and she was cared for by the very best all the way to the end. We will never forget the team dressing up and singing around her bed to her on her last days. I’m teary writing this but it warms my heart to think about it and it was a beautiful gesture. Just one of a million little acts of heartwarming kindness.
The palliative care team are also exceptional. How they manage to build a relationship with you when all you want to do is scream at them to go away. I realize now how important they were and how kindness is at the very forefront of what they do. I’m a little sad but also a little thankful we never really had the dying talk with Hannah. I mostly think she would have surprised us yet again though and approached it with the same kind of courage she showed through it all. Especially with the support she would have had through us and the palliative care team. Bob and Karen were so lovely to us on those last days – I’m so happy Bob was working that week. So much of everything somewhat annoyingly feels like it has a ring of fate to it all.
Then of course yourself, Sonja and Claudia. I will never quite find the right words, and to be honest I’m not sure the right words exist. Let’s just say we have a million times a thank you for everything you all did. Tuesday at 11am will never quite be the same. Each difficult decision we made we were fully informed and with our hearts full and we feel everyone left everything on the line for Hannah. Hindsight means we have thought we would have done some things different but we also have absolutely zero regrets of everything we did. More than everything you all did, as a parent that is the most important thing. We didn’t let her down, you all didn’t let her down, and she sure as hell didn’t let anyone down.
Oh Hannah was so fabulous and we are so proud of her. I feel it’s almost crewel you don’t get to meet these kids pre Cancer but then I guess you also get to see some of their finest qualities.
We took every step with her and we loved her more than we could even comprehend. How lucky we were for those bright, bubbly, beautiful seven years. She was a gift and as much as it hurts without her we are so thankful for her. The pain is a sign of love and that’s all a child really needs. Childhood cancer has a way of making life a bit of a level playing field when you realize the greatest gift you can give is love.
I know I have left people out but each and every one of you will hold a special place in our hearts. I hope the courage Hannah and all those other children we have met inspire you all to do the most incredible things you do for as long as you can. Please always remember more than what you do is how you all do it. The smallest things occupy the biggest part of your heart.
Your friends always,
The Barry’s x
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