Experience Journal: The Transplant Journey


experience-journal-thankyou-image (2)When a vital organ is damaged beyond repair, the only path to health is transplantation- replacing the dysfunctional organ with an organ from the body of an organ donor.  The experience can be physically, psychologically, and emotionally trying for patients and families, especially when the patient is a child or teen.
Experience Journal, a project of the Boston Children’s Hospital psychiatry program, interviewed numerous children, teens, young adults, and parents about their experience through the transplant journey— from accepting their diagnoses to waiting for the donor organ to connecting with the donor’s family. Here are their stories, in their own words.


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Blanket forts, healthy hearts and life: What our families are thankful for

When parents and children first arrive at our front door — no matter why or from where they come — they forever become part of our extended family.

On this Thanksgiving, just like the 47 million others who are traveling to see loved ones, we too packed up the car and drove to visit 11 of the families who have stayed with us at Boston Children’s over the years. We wanted to find out what they were most thankful for and what makes this season special to them.

Thank you to the families of Ella S., Julian, Ella D., Addison, Callum, Nora, Avery, Jace, Molly, Charlotte, Murphy and Robbie for welcoming us into your homes. And thank you for sharing your stories of hope with the parents who may be carrying their child through our front door right now.


Click on a child’s name to learn more. Photos by Katherine C. Cohen. 


Ella S.

“There is little worse than watching your child struggle with a life-threatening condition. In those times when you are begging the powers above to get your child through this, you promise everything, but mostly you promise to never take a moment for granted. It’s hard to live up to that promise day to day — when you’re running late or during tantrums — but then you watch them sleep, watch them change and grow and learn. Then you remember that promise. You remember what really matters. We are thankful for those moments.” – Carrie, Ella S.’s mom



“I was thankful on Thanksgiving two years ago when Julian was born. And I am thankful every day to be able to spend another minute, another hour, another day, another year with such a special person like my son. I am thankful for my daughter’s health, for my family, for Julian’s donor family, and for the many people who have touched our lives throughout our transplant journey.” – Liz, Julian’s mom


20151116_ThanksgivingElla-10cropElla D.

“Last Thanksgiving, we were half way into our craniosynostosis journey — dealing with neurology appointments, helmet checkups and measurements, along with the surgery and the ups and downs of Ella wearing her helmet 23 hours a day, 7 days a week. We are all thankful that it’s a memory and she’s helmet-free!” – Cynthia, Ella D.’s mom



“Fall was typically tough on Addison: she would have pneumonia every year around this time. Then she was diagnosed at Thanksgiving time two years ago. She had several invasive procedures, a sedated MRI, and then came the open-heart surgery. I don’t recall breathing much during any of that time. This year we are thrilled that she is healthy. I can finally relax a little and trust that if she gets a cold, it will just be a cold and not turn into something more serious.” – Kristine, Addison’s mom


Unknown-1Callum and Nora

“For the parent of children with life-threatening diseases, Thanksgiving has a different meaning. I am thankful for blanket forts and finger-paint artwork, baby dolls and matchbox cars strewn throughout the house, messy fingerprints on every surface and cookie crumbs in the couch cushions. And in the middle of the night, when a child’s cry disturbs our sleep, we are so grateful that we are able to hold that child in our arms and soothe them back to sleep. We know that there are parents with empty arms who would love to be woken up in the middle of the night by their child’s cries.” – Christine, Callum and Nora’s mom



“Last Thanksgiving, we were two months removed from Avery’s open-heart surgery and she was doing wonderfully. The gratitude we were feeling at that time was overwhelming. It was a “close your eyes, clench your fists, exhale” kind of gratitude. I couldn’t imagine ever feeling happier or more thankful. This year, what we feel has evolved into an “eyes open, fingers spread, inhale” kind of gratitude. Today, as we watch our healthy and blossoming 3-year-old girl, an all-encompassing joy accompanies the gratitude.” – Jessica, Avery’s mom



“We are most thankful that our son, Jace, is now 16 months post surgery from his third and final procedure treating his hydrocephalus. Jace has brought so much joy to our whole family and friends. I feel very proud of all he’s done already in his life. He looks, sounds and acts like nothing ever happened to him. In fact, it seems as though he has some sort of superpowers.” – Jamie, Jace’s dad



“With each year that passes, we become more grateful for another ‘healthy’ year with Molly. We are grateful for her heart (both broken and now as healthy as it will probably ever be). If she wasn’t born with a sick heart, we wouldn’t know what a miracle looks like, how amazing Boston Children’s is and how many lives are saved because of the amazing work done behind those doors.” – Kerry, Molly’s mom



“When Charlotte was diagnosed in 2011, I mourned all the things she would never do and cried for all the struggles that were ahead of her. We still have those dark days, but I’ve learned to appreciate every milestone and happy moment in a truly grateful way. Tuberous sclerosis has become part of our life, but it’s not our whole life. Charlotte is a happy, sweet 5-year-old that lives a good life. Her disease has taught me to find those moments of thankfulness every day.” – Allyson, Charlotte’s mom



“On Nov. 26 of last year, we found out that Murphy was officially cancer-free. Her chance of having cancer again is less than 1 percent! I will always remember what Murphy’s oncologist told us: to never forget what she had been through and to never forget that she is a cancer survivor at five and a half months. This Thanksgiving, we are busy celebrating Murphy’s cancer-free day and the arrival of our newest little girl, Declan!” – Christine, Murphy’s mom



“Through this very trying fall, we have learned how incredibly fortunate we are to have such amazing families, friends and doctors. And we are thankful for Robbie, the happiest, most lovable little boy who lights up our every day. He reminds us that everything will be all right with his amazingly positive disposition and constant smile. Our hearts grow fuller with every day we spend as a family and with Robbie.” – Kayla, Robbie’s mom

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“Bringing a little bit of home” to our Thanksgiving meal


(Katherine C. Cohen/Boston Children’s Hospital)

Colin Targett

Executive Chef



I have been here for four-and-a-half years and this year, our food service team will be preparing a home cooked Thanksgiving meal for about 800 patients, families and staff. My goal is to always bring a homemade approach to the meal and share something special with our guests for the holiday.

We are roasting fresh turkeys, making a fresh stock and making gravy from scratch. It’s not just opening boxes or taking an already seasoned turkey out of a bag and putting it in the oven. It’s preparing the meal and being able to give it that homemade flavor.

What does it take to prepare a home cooked Thanksgiving meal for 800 guests?

We will be preparing 56 turkeys, 15 hams, 150 pounds of butternut squash, 150 pounds of potatoes, 120 pounds of root vegetables, 80 pounds of vegetables for pasta primavera, 80 pies and 100 loaves of bread.

My father, who is also a chef, makes caramelized root vegetables for Thanksgiving every year. It’s a blend of parsnips, carrots, butternut squash and sweet potatoes. He always gets it just sweet enough but still a bit salty. I am preparing the dish as part of our buffet and bringing a little bit of home here.



care-team-logoCaring for patients is a true team effort. Care Team highlights the dedication of the people throughout Boston Children’s who do their part to comfort and support patient families each and every day.

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From finger painting to Boston Children’s for acute pancreatic care


Three-year-old Brooklyn loves to get her hands dirty. When it comes to playtime this spunky and vivacious toddler shies away from tiaras and princess garb and heads straight for her overalls.

“Brooklyn is adventurous, curious, and loves dirt, mud and paint,” said Kristen, Brooklyn’s Mom. “We have an art room, and she has a blast with paint in there.”

Though the tiny finger painter and mud-pie maker loves all-things mucky, her passion for excavation and exploration was recently put on hold.

Soon after Brooklyn’s third birthday, sudden bouts of intense stomach pain and vomiting became frequent.

“She vomited around 9 a.m., then again at noon, and from then she threw up about every 20 minutes,” recalls Mom, a nurse at her local hospital.

Brooklyn was quickly seen by her pediatrician who believed the toddler had a viral illness. He prescribed anti-nausea/vomit medication and recommended Pedialyte  to prevent dehydration.

The hope was the pain and vomiting would pass. Unfortunately, it didn’t. In fact, it worsened.

“The next few days involved episodes of awful vomiting and contorting discomfort to the point she would just pass out,” says Kristen.

Brooklyn needed specialized emergency attention.

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