To Our Smilow Family

Lindsay was diagnosed with Leukemia at St. Francis Hospital in March of 2016 and our lives were forever changed.  As a mom, I can’t imagine anything more devastating than receiving a diagnosis that your child has cancer.  Looking back, those days were excruciatingly filled with fear and helplessness for me and our entire family. It was the beginning of our journey with Lindsay and her disease.

As a mom herself she understood how difficult it was for us to accept that we could lose her and I believe today her strength and determination to fight the fight was for us.  Lindsay was always a strong individual both physically and mentally and she took on a warrior persona as though she was going into battle.  I marvel at how she forged ahead.  She shared in our talks that her strength and determination was something she got from me and that I instilled in her a fighter attitude.  If that’s true, then how ironic as I became a blubbering idiot and my kid with cancer consoled me regularly and kept telling me I would be okay, regardless of the outcome. In this year and half we had the opportunity to share everything and anything including how she wanted her son raised and how she wanted her last days to be.  She spoke of blessings, we both did, and that there were blessings everywhere and we just needed to find them.

In her final days, I replayed all of our conversations in my head over and over. I sat in the lobby of Smilow just praying to God and our blessings conversation kept repeating in my head, the message was to find the blessings. I remember being slumped down in the chair in the lobby and I looked up as though I was at Smilow for the first time.  There was a stream of people in and out, someone playing the piano in the background, the atmosphere was so inviting and a warmth came over me, the message was clear, the blessing was Smilow.  Smilow became our home, we were home with our Smilow family and the thoughts and gratitude just came pouring in.  I reminisced how Smilow represented for me comfort, hope and peace.  Many days were scary days but it all seemed better when we were with the family who could really take care of Lindsay.  Even for Lindsay, we would have brought her home in her final days but it was her choice to stay with her Smilow family.  We are forever indebted for the care, love and support that Lindsay and our entire family received.

There are so many doctors and nurses who have impacted our lives forever. I will never get to all of you but over the many months I hope I told you what you have meant to us. 

Special Thanks

 Lindsay would joke on our way to clinic and say “I need to get me my Sunshine” -  Sunshine was her girl, as Lindsay would put it.  She would always say how much she loved her Sunshine.  Sunshine was her nurse in clinic and mommy’s counselor, too.  There was an incredible bond and trust between the two.  We are so grateful for Sunshine, your love and care for Lindsay was incredible, we love you!

Julie Baker and Lindsay bonded instantly.  I am not exactly sure when the two met but I know Sunshine was instrumental in the meeting.  Julie meant the world to Lindsay and the two were connected on a whole different level. It’s almost like their two souls connected in a way I will never know.  Julie had an extraordinary ability to comfort Lindsay both physically and mentally.  I have never met anyone like Julie. I would think if there are angels walking among us, she surely is one.  Julie, you were a gift from God to us, I love you!

There are so many to thank and so many in clinic who cared for Lindsay. A special thank you to: Jennifer, Karen, Lisa, Maloo, Melissa, Nicole, Lee, Paty, Silah, Sue and Laura. I am sure I am missing many but your faces are the faces I see. I am extraordinarily grateful to you all.  When it gets difficult I hope you always remember the impact you had on our lives and how you made each of our days with you better and brighter.

Dr. Zeidan:  We are especially grateful to you!  You gave us HOPE.  When Lindsay relapsed at St. Francis and on TPN, Dr. Mulay sought you out and you accepted Lindsay into a trial when no others would.  That trial got her into remission for transplant.  We had the opportunity to spend many great days with Lindsay because of you.  Hope is such an important factor when traveling this journey for both the patient and family.  I believe when you lose hope you lose the fight.  My heart tells me together we made the best choices for Lindsay and I have no doubt that under your care she got the best care anyone could have. Thank you so very much. 

Dr. Podoltsev:   Maybe just by happenstance or kismet we just happened to always be admitted while on your rotation, sorry.  We happened to grow very fond of you as well and though we may not have always agreed on steroids I have an incredible respect for you.  I will never forget your visit to us one day, just you, when you sat along Lindsay’s bedside and listened to us.  I could feel that day in my heart that you were a daddy and the dad over Doctor kicked in.  It touched my heart.  Thank you and blessings to you!

Dr. von Keudell:  Lindsay and I spoke after you and the team left us on Wednesday, 7/5 to deliver the news that the cancer had moved to her spine and that we had exhausted treatment options. She felt so bad for you that you had to share that news but what you should also know is that she was happy.  She looked to me and said, “Mom, does this mean I don’t have to take anymore pills, I don’t have to eat anymore if I don’t want to, and does this mean I can have soda?”  She said, “Mom I am at peace, I am sorry, but it’s time.”  You released her to peace.  Thank you and Megan and the wonderful folks on your team. It was a difficult task but there were blessings too.

To the nurses on the 11th floor:  You are an exceptional group of souls that have dedicated your lives to making a difference, such a significant difference in the lives of so many.  I don’t know where the strength you have comes from, but it’s almost superhuman and you should know you are heroes to me and our entire family.  I admire each and every one of you!  You are all so special and I am so grateful for the exceptional care you provided to our little girl and for all the love and hugs you gave to us over the months.  Thank you and God Bless you always!  I hope we all can see each other again.  Thank you  Angelina, Christina, Galina, Kristin, Jess, Rachel, Jennifer, Grace, Jarrett, Terri, Maria, Vanna, Erin, Sara, Ashley, Ashleigh, Aimee, Amy & Amrita.

And to each and every PCA that was there for Lindsay, and especially Eileen & Oressa, she adored each of you too!  We love you and Thank you so very much!

In her last hours Lindsay required a special level of care, Hospice. I was apprehensive in transitioning Lindsay to Hospice but I was assured the transition would be seamless.  The word “Hospice” itself connoted a whole different aspect for me that just made me uneasy. I was concerned that Linds would not be with the nurses she loved or the room she had been in. I had all sorts of preconceived notions but they were from pure ignorance. I couldn’t have imagined a more wonderful level of care or a more exceptional group of people under the direction of attending Jennifer Capo. I am so thankful for the tender loving care of nurses Jennifer and Amy. The attention to my daughter’s needs while she herself was uncommunicative was beyond belief.  These special, special ladies are completely amazing. I cannot comprehend the type of person who dedicates their careers to end of life care, there are no words.  Thank you, Thank you ladies, the comfort care for Lindsay and our entire family was incredible.

My final words are to the nurses that cared for Lindsay the last 5 days of her life and a special person I consider a dear friend, Leora. 

Amy and Ashley had taken care of Lindsay even prior to transplant. They were there from the beginning and there was a trust that goes beyond words. It was especially comforting for us to know that Lindsay would get the level of care from nurses who went through the battlefield and every strange change and nuance that Lindsay experienced.  We never had to pay attention when Amy or Ashley were her nurses. That’s not to say that the other nurses didn’t treat Lindsay exceptionally well, but these two angels knew everything there was to know about Lindsay. It made us rest easy.  They didn’t need to re-acclimate each shift and review her history, they were there for it, they were a part of it.

I am not sure though I suspect that Maria may have assisted in scheduling the trio. Thank you, Maria, we love you too! We met Amrita for the first time during this period and it was like she was there from the beginning.  There was such a sense of peace with these three. They knew what Lindsay liked and what she didn’t and they provided outstanding, outstanding care to Lindsay and incredible support to our family. As you could imagine, as the days grew longer, we grew more weary, on the cusp of mental and physical exhaustion, heartbreak and each hour on the brink of losing it.  The three gals would sit at Lindsay’s bedside with the rest of us like they were losing a friend too - that’s how they made us feel. We love you and will never forget you, ever!  (Amrita:  I reference in another section our evening together, it was a night I will never forget). 

Leora, I can’t imagine navigating this experience without the comfort and support from you.  You are probably the only person I have shared my many fears with along the way.  Opening up or not being in control is not something I do well, but you gave me the outlet to just let it out.  Your support with Landen and our entire family gave us all so much comfort.  I don’t know how to thank you for your help and guidance even when we may not have been receptive, you still continued to gently move in.  I suppose you realize that some of us put up barriers as a means of survival.  You helped me to accept your help.  I really love you, Thank you!

On many occasions in a plea to fight for my daughter’s life I researched the top hematology oncology hospitals and experts all over the country.  I looked at the top 3 cancer hospitals in the US and even looked outside of the country.  I would have taken Lindsay anywhere.  It didn’t appear to me that any other hospital had other novel treatments that Smilow didn’t already have.  I once spoke with Rogerio Lilenbaum, Chief Medical Officer at Smilow, and he shared that if a trial existed elsewhere it could be brought into Smilow and I whole heartedly believed him.  In the end, I still believe that AML can be cured and I also believe that Smilow offers the best combination of outstanding researchers, doctors, and an exceptional group of compassionate talented nurses.  This combination sets this facility up as a world class hospital and if I turned back the clock, Smilow would still be our home.

Love and gratitude to everyone who has touched our lives...

The Family of Lindsay Presz Barrett.