A Thank You Letter to Patients & Families

By Jennifer Wheaton, CCLS, Child Life Specialist at Connecticut Children’s

In honor of Child Life Month, Connecticut Children’s Child Life Specialist Jennifer Wheaton shares a special message of thanks to the patients and families who have taught her about true love and what it means to be a hero.

10636058_10206394948776008_7811507492957505940_nI can say with confidence that I have the best job on the planet. Hands down. I am fortunate to be one of the Child Life Specialists in Hematology & Oncology here at Connecticut Children’s, a job that to me is so much more than a job. When I was asked to write a blog post in honor of Child Life month, I wasn’t sure at first what to write about. The suggestion was made to perhaps write about what a “typical day” was like for me bouncing between the Outpatient Hem/Onc clinic and the inpatient floor, and while that might be educational and eye opening for some, I thought that instead I would take the opportunity to thank my patients and families who are without a doubt, the greatest teachers of my life and who make it a joy for me to come to work every day.

To my patients and families….
Thank you for letting me be a part of your journey. For some of you reading this, your journey with your child who has cancer or a blood disorder may just be beginning, for others it has been years. Years of clinic appointments, of inpatient stays for low blood counts, pain crises, trips to the Emergency room. Hundreds of port accesses, CT scans, specialty appointments, countless hours of waiting for results that could bring sighs of relief or unbearable heartache. It’s not a journey that you ever would have willingly signed up for, but every family I have met through my work here has navigated through these things with grace and fortitude. It is incredibly inspiring to watch the outpouring of love and support that you show your children, and in turn, your families, friends, and communities show you. It’s heartbreaking and awe inspiring all at the same time to watch parents pull up cots next to their teenagers beds on MS8 and camp there for days, weeks. To see you come in for admissions with suitcases filled with the comforts of home, wall stickers, bed sheets, anything to turn a hospital room into a place where a little girl or boy can still be just that. To celebrate the last chemo treatment with cake, a balloon, and the “Happy Last Chemo” song.

10615995_10206003296430524_4308629737402531947_nThank you for letting me teach you a little bit about your child’s illness, but throughout their illness, thank you for letting them teach me about life. Many of you may recall the first time that I met you and your child, I usually introduce myself and say “I’m kind of like a teacher, but I teach about the hospital.” I would then follow that sentence with a conversation explaining that an IV is a plastic straw that gives your body a drink, or I may have brought in a doll that has a port in its chest and allowed your child to be the nurse if only for a moment and let them access the doll, put on the dressing, and flush the port. I may have prepared you and your child for surgery, showed you pictures of the operating room, explained to your child how we would use “special medicine” to help them fall asleep, and maybe I held your hand or gave you a hug after you put your full trust in our team and walked out of the operating room with me, leaving your sleeping child on the OR table. I may have even had that conversation with you and your child that is every parents worst nightmare, explaining how sometimes “cells in our body misbehave and grow very fast and out of control” and that is called cancer. I may have used mini marshmallows to represent cells, letting your child stick them together forming a ball, a representation of a tumor that had grown in their tiny body. I may have used a felt bone and explained how bone marrow has red cells, white cells, and platelets and let your child apply each of these things haphazardly onto the bone as we talked about what happens when your body has too many of one of these things, or not enough of another.

In these moments with you and your children, I hope that I gave you some information or tools to help you navigate this new and oftentimes uncertain journey that you were on. But like I said, it pales in comparison to the lessons that you have taught me. Your children teach me every day as they bounce into our clinic with smiles on their faces despite needing chemotherapy or blood transfusions, or having disease that makes it painful to walk, how incredibly powerful and resilient the human spirit is. They teach me about the true meaning of bravery every time they talk themselves into another port access by taking deep breaths and uttering sweetly “I can do this” while looking for affirmations from you, and from me that indeed they can. They teach me about the meaning of friendship, as they begin to interact with kids in the playroom, kids who are all there for different reasons, and yet they share an undeniable bond with one another. Sometimes they kindly ask each other why they are there, sometimes they don’t, as if they don’t even notice IV poles, bags of blood or chemo, pain pumps, or wheelchairs. It doesn’t matter to them that some of the kids don’t have hair due to their treatment, or that some kids may talk or walk differently, to them they are playmates and new friends. Your children teach me to appreciate the seemingly little things in life that are truly the big things. The first day back to school after a year away due to treatment, the first day out of isolation following a bone marrow transplant, the spur of the moment trip to the park taking advantage of a “good day” where they feel well, and their counts are high, and their spirits are boundless.

11071457_10155383373795046_2709589548817100573_nAnd you, their parents and caregivers, you teach me about the meaning of love. Of true love. I know, because I watch you every day, I know that you would go to the ends of the Earth and beyond to make your child well. I know that if it were possible, you would trade places with them in a heartbeat. I watch as you navigate the journey of getting your child through their disease, a journey that has no manual, and no certain course. At times feeling powerless to help them, frustrated, angry, sad. But also feeling pride at your little wonder who just learned at 3 years old to swallow their chemo, or who got through their bone marrow aspirate without tears, singing “Let It Go” as sedation meds were pushed and they drifted off to sleep. I imagine that there are many of you who barely sleep while your child is undergoing treatment, you worry, you Google treatment options, you watch your child sleeping in a hospital bed wishing they were home. You are my heros. Your children are my heros.

So I thank you for letting me be a witness to the incredible joys and pain that come from your journeys with illness. Thank you for allowing me to sit with you and teach you about cancer, or sickle cell, or thalasemia, or HLH, or any number of illnesses that may have brought you through our doors. Thank you for letting me bring in toys, or bubbles, or a dance party into your hospital room, so that maybe, just for a few moments, your child can forget why they are here. Thank you for being my life teachers, you inspire me and are what makes my job great.

jenn wheaton 3

Coming Home: Claire’s Story

By Michelle, Claire’s mom and Runitlikeamom blogger, http://runitlikeamom.com/

IMG_6043-300x300My daughter, Claire, just celebrated her third Christmas. She runs and plays with her pals at school, dances in front of the mirror daily, and complains when it’s time to wash her hair. Her favorite color is purple, and she insists on wearing skirts or dresses- no pants. She is the quintessential “girly-girl”, all tutus and glitter, and we love every minute with her.

Upon birth, Claire was diagnosed as having a coarctation (narrowing) of the aorta, and she was immediately transferred to CT Children’s Medical Center. On her fifth day of life, just as she began to show outward signs of heart failure, she underwent surgery to repair her heart. The repair was successful, with relatively minor side effects, and currently all that is necessary are annual checkups to ensure that everything is in working order.

As I try to recall that time of our lives, I only remember pieces of things. Faces, not names. Feelings, not events. The moment the cardiologist came into our room a couple of hours after Claire’s birth, it was as though glass had shattered so loudly that it left our ears ringing, and the world around us suddenly became muffled. We felt as though we were in a tunnel and could only keep Claire in our sights. The talented and nurturing staff at Connecticut Children’s knew exactly what to do, how best to support us, and they literally carried us forward with the most gentle hands. They provided a room, a kitchenette, a washer and dryer so we could be with her. Every morning of her stay, the doctors gathered outside her door to discuss the day’s challenges and goals. We were invited to ask questions, make requests, share concerns- anything we needed. Additionally, they understood that I had just given birth, and also had medical needs. Nurses sought me out regularly, checking on my body, helping with breastfeeding. Always available for this terrified new mom. A seemingly tireless brigade of men and women supporting our entire family.

It’s still a wonder to me, that at the very time we were in need, the staff at CT Children’s Medical Center rose to the occasion, saving the life of our daughter. A terrifying ordeal, made manageable by the extraordinary professionals in this children’s hospital. Every person we came in contact with, in every department, had the same goal- to take care of our family. And they did it with grace and compassion, coaching us every step of the way in order for us to take our baby home. For that, we are forever grateful.

Coming Home: Jillian’s Story

By Amie M., Jillian’s Mom

1 RecoveryWhen our baby daughter, Jillian, went for her one-month checkup at the pediatrician’s office, the doctor detected a heart murmur and suggested that we contact the Cardiology department at Connecticut Children’s Medical Center. My husband and I were a little concerned but thought that a heart murmur was nothing to worry about. We knew someone in our own family that had a heart murmur when they were younger but outgrew it so we assumed Jillian would outgrow it too.

One week later, we were at Connecticut Children’s while Jillian was attached to all kinds of wires for an EKG and an Echocardiogram. We met nurses, residents and many people who made us feel like we were in a safe place. Again, we were cautiously optimistic that we would be told that it was nothing to worry about and then we could go enjoy our newest little bundle. Finally, when we met Dr. Bernstein, he asked us to sit down and said that he was going to draw us a picture of what Jillian’s heart looked like. Our stomachs sank, I started to cry and our journey began…

Jillian was born with two holes in her heart – one was a small Atrial Septal Defect (ASD) and the other was a larger Ventricular Septal Defect (VSD). The hope was that these holes might close on their own. We continued to go for check-ups, praying that the holes would miraculously close and no intervention would be needed. From what we could see, Jillian was a healthy and happy kid, which made it hard to believe that anything was wrong with her heart. But while we saw no outward signs of distress, her heart was working overtime and burning all of her excess calories, keeping her small in size. Within five months of our initial visit, we were told that there was no indication that the holes would close on their own and surgery was going to need to happen in about six weeks.

We were able to speak with one of her surgeons, Dr. Kirshbom and an anesthesiologist prior to the surgery to ask any questions we had and everyone kept us as informed as possible along the way. We knew the risks involved but also knew that surgery was the only way to keep Jillian healthy. Our little girl, was seven months old and only eleven pounds when she had open heart surgery.

On the day of the surgery, we drove to the Medical Center, completed our paperwork and handed our precious baby to one of the pre-op nurses at about 7:30 am – now all we could do was wait. We were relieved when one of the nurses texted us about an hour later and said that Jillian had gone under anesthesia with no problems and that the operation would start soon. We received two other texts during the procedure with updates, which helped to calm our nerves. Finally, Dr. Kirshbom came into the family waiting room to tell us that the surgery was a success! The VSD ended up being bigger than initially thought but they were able to repair the holes with tissue from a sac around her heart.

3  J SullivanJillian was sent to the PICU for recovery, where we were met by an amazing staff including two day-nurses, Lynn and Beth. We also met Dr. Amy Wu and Jill Sullivan, MS from Cardiology – they were with us the rest of the way. We were told that Jillian was recovering in just the way that they had hoped and we were moved to a recovery room on the 7th floor within a day and a half, with the possibility of going home the following day – we were shocked and hopeful.

2  DrWuOur family had planned to be in the hospital for 7 days and then on the 4th day, we were told we could go home! We were given all of the instructions for Jillian’s medicines, reviewed all of the precautions on how to care for her incision, did all of the discharge paperwork (as fast as we could!) and we were on our way home by dinnertime. We were prepared for recovery at home, no matter how long it took but the hard part was over. As we drove away, all of the months of worrying and sleepless nights were behind us and I thought I noticed that the sun was shining a little brighter…

Jillian went home with 5 prescriptions and was completely off of them within a few short weeks. Her older brother was so happy to see her and she seemed back to her normal self in no time! We had to take some special precautions in how we handled Jillian for the next 8 weeks but the occupational therapist, Josh, had reviewed all of that information before we left the hospital – including how to safely lift and bathe Jillian. She has been going for all of her follow-ups with Dr. Bernstein and we breathe a sigh of relief each time. It has been 6 glorious months since her surgery.

4  Jillian-AfterWhat made the biggest impact on us was that the doctors, nurses and staff at Connecticut Children’s Medical Center don’t just treat kids, they treat the whole family. My husband and I always felt like they really cared when they asked “How are you doing?” or “Do you have any questions?” and we were never rushed when we responded. The first year of Jillian’s life was scary in a way that I can’t put into words but at Connecticut Children’s, we were surrounded by people who made us feel like our child was being cared for in the absolute best way possible.

Gratitude for Connecticut Children’s Medical Center

By Sarah Bernhardson, Mom and Blogger for Connecticut Working Moms, ctworkingmoms.com 

Happy guy recovering!

Almost three weeks ago, I arrived home from work to a happy, active three year old who was excitedly planning what kind of cookies we’d bake for our family movie night that evening. Literally one hour later, my poor little guy was on the floor sobbing that his tummy hurt. Trying to not be “that mom” who rushes to the ER with every tiny thing, I headed to my local urgent care clinic, figuring they’d send me home with maybe a virus diagnosis. I had no idea what lay ahead.

For me, the night took a scary turn when the urgent care doctor advised that I start driving to Connecticut Children’s Medical Center right away, or if I’d rather, he’d call us an ambulance. Um, what? I was waiting for the “bland diet and keep him hydrated” speech! I opted to drive, and texted my husband to meet us there. At this point, I was thinking maybe the urgent care doctor was just being cautious, or at worst, maybe my son had appendicitis.

We arrived at CT Children’s within 40 minutes, and I started feeling better and more calm. We’d already had a fantastic experience with them a year and a half earlier when this same child broke his arm…and removed his cast within 24 hours…so I knew we were in good hands. We were seen immediately, and our doctor decided to order an ultrasound to check for an intussusception. I consider myself a pretty well-informed mama, but I’d never even heard of this before! I very much appreciated that he took the time to calmly explain what it was (basically when part of the intestine slides into itself like a telescope) and how it was typically treated.

We were whisked in for an ultrasound with a very friendly ultrasound technician who even took the time to explain to my three-year-old what she was doing. My husband arrived to take my 6 year old home, and my parents called to say they were on the way to keep me company. While I was waiting alone with my son, the doctor delivered the news I’d hoped we wouldn’t hear: it was an intussusception, and it needed immediate treatment, first with an uncomfortable air enema, and if that failed, emergency surgery. I was floored! What I thought was no big deal was actually a potentially life-threatening diagnosis. I was shocked and scared. Someone must have seen the look on my face (and my poor son’s pained expression) because in came a wonderful, calm child-life specialist who offered to answer any questions I had, asked if she could help in any way, and gave my son a beautiful, soft, handmade blanket to keep. If we had to face emergency surgery, I was happy it would at least happen here.

The next three days were a whirlwind. My son ended up needing the emergency surgery, then spending two days in the hospital recovering. During that time, I was constantly impressed by the child-centered care we received. From amazing nurses who managed to take my son’s vitals in the middle of the night without waking him to menus including ice slushies and grilled cheese to a gorgeous playroom on our floor which really brightened my son’s morning when he was up and walking again, CT Children’s made what was one of the scariest things I’ve gone through as a parent much less scary. When we left, he was excited to gather up all his “prizes”, the hoard of fun toys the nurses had given him for being brave during any painful procedures.

Up and walking…motivated by the toys!

Awesome kitchen area

Touch-screen games

Activities for all ages – even books to loan out!

From my point of view as a mother, the worst part of my entire experience was seeing my poor, sobbing son be wheeled away from me into the operating room in the middle of the night. However, knowing that every doctor, nurse, and health technician there was trained specifically to care for children made it much easier. Knowing our anesthesiologist worked with children day in and day out, knowing that everything was child-specific, made me at ease as is possible when faced with emergency surgery on one’s own child. So a huge thank you to everyone at Connecticut Children’s Medical Center for all you do. We truly thank you for being there, and for your excellent care of my little guy!