The day of Chemo
A funny thing happened on the way up the mountain.  Sounds like it could be the start of a great story, right? Well, it actually is.  As we were traveling on Friday, we got a call from both St. Jude and LeBonheur's Media Relations.  What transpired over the next few hours was Erik conducting an interview with USA Today and me conducting an interview with The Commercial Appeal (Memphis paper.)

Erik spoke with a reporter from USA Today about the effects of the national drug shortages.  If you remember, Lucy suffered from a Thiamine deficiency which led to temporary blindness due to a national shortage of  multivitamins when she was kept alive on TPN.  Her case has been studied by many doctors and researchers and was presented to Congress last year.  In an effort to keep the pressure on Washington and the pharmaceutical companies, St. Jude has been getting the word out in every media outlet they can.
We were honored to speak about the impact that the shortage had on Lucy's life.

The shortage of medicine in our country is something that is incomprehensible.  One might expect that in a 2nd or 3rd world country, but not here in the United States.  It is unconscionable that a family would have to be told that their child could not receive the Chemo drug that would save his/her life.  I can not begin to understand the agony that a family would live in knowing that there was a drug out there that could save their child's life, but they couldn't get it.

Please help spread this link.  The more pressure we continue to put on Congress, the better chance we have of eliminating this horrible dilemma.  "You're fighting so hard and you're so desperate. I can't imagine knowing that you didn't give them the best option."  Erik Krull, USA TODAY

 http://tinyurl.com/usatodayhoffman.  This is the link to the USA Today article.  
The second media opportunity we had was with the Commercial Appeal, the local Memphis paper.  The article is below, as you can't read it online without a subscription.  (I did include a link in case you can access it.)  The Go Lucy Go Foundation was asked to fund the creation of a book that was written by one of the nurses on the Neuroscience Floor of Lebonheur.  We were honored to be a part of this process and I love the finished project.  The book is just one more reason why LeBonheur Children's Hospital remains one of the nation's best pediatric hospitals.


Photo by Kyle Kurlick

Le Bonheur Children’s Hospital neurosurgery coordinator Brittney Lee wrote a book to help patients like Devin Pelt, 10, know what to expect if they're diagnosed with a brain tumor. "The need was so apparent," said Lee, 30, whose job is to educate families about surgery and treatment.

Illustrated by Russ Evans, “Joey’s Wish” features a soc-cer-playing boy who goes through brain tumor surgery.Photo by Kyle Kurlick // Buy this photo
Illustrated by Russ Evans, “Joey’s Wish” features a soccer-playing boy who goes through brain tumor surgery.

Brittney Lee saw a need at Le Bonheur Children’s Hospital and filled it. Her effort is making life a little easier for patients and their families on the 7th-floor FedEx Neuroscience Unit at the hospital.

Lee, 30, the neurosurgery coordinator, a registered nurse and the mother of two, knew how scary and confusing a brain tumor diagnosis is for children and their parents. Lee is often the first face that families see at the hospital after a diagnosis. It’s part of her job to educate them about what to expect in surgery and treatment.

So she decided to write a book to help ease those fears. That book, “Joey’s Wish,” was published last fall, and since then has been making a difference at Le Bonheur, where about 180 brain tumor surgeries are done a year, and it is beginning to be requested by other hospitals.

“I feel like this has God written all over it,” Lee said. “I don’t feel like this came from me. It fell into place too easily. I feel like the need was so apparent, and I’m just humbled that I was the one that got to be able to be the instrument used to put it together.”

The book came together in a serendipitous manner last summer. First, Dr. Fredrick Boop, chairman of the department of neurosurgery, brought back a book along the same lines from an international conference, commenting that it would be nice to have something like it here. Since it was culturally specific, even translation would not make it suitable for Le Bonheur.

“I saw the book, and I knew that the need was there, and it was like it clicked,” Lee said. “So I sat down, and it took me about an hour and a half to write this story.” Her original storyline follows Joey, a typical soccer-playing kid who experiences symptoms, goes to the doctor, gets a diagnosis and goes through brain tumor surgery and recovery at Le Bonheur. In the end, he helps ease the fears of another child.

“I’m a mom of two, a 5-year-old and a 2-year-old, and I read to them constantly,” Lee said. “So I kind of knew the language style to use.”

She had a story, but needed illustrations. Russ Evans, a graphic designer who lives in Pinson, Tenn., near Jackson, saw a Facebook post seeking an artist for the book. Within a week, he had responded, agreeing to do the work pro bono. Soon after, he visited the hospital to get an idea of the setting for his watercolor illustrations.
“It was just a challenge to illustrate something that somebody had had the vision to write,” said Evans, 51, who is the graphics supervisor for West Tennessee Healthcare in Jackson. “It was right up my alley. Plus it’s going to help these kids deal with something that is pretty scary.”

At that point, Lee needed money to produce the book. Enter another angel: The Go Lucy Go Fund, founded by the parents of a Le Bonheur patient in appreciation of the care she received. The fund, which raises money for educational purposes at the hospital, paid for the printing.

“The Go Lucy Go Foundation chose to fund the book, ‘Joey’s Wish,’ primarily because of the memories we have of the day we told our 4-year-old daughter, Lucy, that she has brain cancer,” said Kate Krull. Her daughter, now 7, was treated for medulloblastoma, which is cancer of the brain and spine. “Brittney was able to put into writing all the things we wish we had known to tell Lucy and her sister in terms that they could understand.”

The hospital’s child life specialists and the Family Partners Council, which is made up of parents of patients, vetted the book. Given a thumbs-up, it was printed by the hospital’s print shop. And three months from start to finish, 250 copies were ready to be put into the hands of patients and their families.

“There are so many times when I give patient families their information and tell them what they can expect, and I go home and I think, ‘How in the world would I explain this to my child?’ ” Lee said. “I thought about all that when I was putting the story together.”

She was adamant about wanting the book, which is targeted to ages 3 to 10 but useful also for older children, to reflect the hospital.

The characters are like the people the patients will see. Dr. Awesome is the pediatric neuroradiologist, Dr. Good is the neurosurgeon, Sunshine is the child life specialist, Hope is the physical therapist. “Just little metaphors for them, so it’s not so scary and to give them a feel of the love that we have for them and that we care,” Lee said.
Joey and his mom visit the Wishing Wall in the lobby level of the hospital, and he goes through Bunny Lane before surgery to pick out a toy.

Dr. Paul Klimo, chief of pediatric neurosurgery at Le Bonheur, said the book helps make his job easier. “I think it’s very valuable for the kids and for their families,” he said. “It takes them through a typical start-to-finish journey of a kid that has a brain tumor and needs surgery and postoperative care. It breaks it down in a very easy-to-read-and-understand process.”

There is room in the back of the book for parents to take notes or jot down feelings. A note from child life specialist Jessica Kellough gives tips on how to approach the subject of a brain tumor diagnosis with children of various ages.

Lee said the book is designed for parents to read to their child. “It’s important for the parent. It gives them words to help explain to their own child what’s going on, and it’s important for the child to hear it from someone who is very close to them where they feel safe and secure.”

Tracy Tidwell, director of the pediatric brain tumor program, said the book is “one of the best things that’s happened to our brain tumor program.” She said she’s seen a parent use the book, by making a game of finding the places in the hospital that are in the book.

“I think in the eyes of the child just knowing Joey and knowing that Joey’s OK means everything,” Tidwell said.

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  1. That's awesome! You are amazing advocates!!

  2. That's wonderful. Thsnks for spreading the word. As a nurse, I'm seeing more and more drug shortages.

  3. Very Cool. I hate that you had to endure all that to spread the message, but I am thankful that you are strong and brave - able to get the word out. The Krull family are warriors for God. He is using you for His glory. How honored you must be! SO proud of you all.

  4. Kate and Eric you two are simply some of the most amazing people I know. For you to not pitty the story that your life has dealt you but to be able to do something so much more is amazing. I hope that I never have to walk in your shoes, but if I did I hope I could do it with even 1/8th of the courage, determination, and dedication that you guys have shown to the world. THank you for allowing all of us to become involved in your story. I have come to love all three of your beautiful children since I first started following Lucy's story at the beiginning of yoru journey.

  5. I completely agree with Indygirl!! You two are amazing people!! God has blessed me by bringing you all into my life!! Your family is a true inspiration! Love you guys!!

  6. This is an amazing story from an amazing couple with amazing kids!

  7. Thank you for sharing your (Lucy's) story so widely. And what an amazing book for the Go Lucy Go Foundation to support. The story of the book just gave me chills.

  8. I've only been following your story for a few months but I understand where you are coming from on the drug shortages. I worked in a hospital pharmacy for 3.5 years where we suffered severely from nation wide drug shortages. There is no excuse for drugs that are needed to be available, when the drugs that are needed. Another thing that hits hard on drug shortages is 2nd hand places will know that shortages are coming up and will buy up lots of inventory so that they can mark up the prices because the pharmacies HAVE to have the drug. While I worked I saw Thiamine, Epi, Lasix, Morphine, and Infant Vitamin K be on short supply where we wondering if we were going to have enough for patients. The Epi shortage was so bad we were having to rob hardly used crash carts to keep the ER in supply.

  9. I am going to echo some of the comments that have already been made. Thank you for always being so candid, and for letting strangers into your life ... and into the life of your children. Your strength, courage, love for God, and even your "moments" of hardship have really touched me, a stranger. I hope you know (and truly believe) what amazing people you and Erik are. I can't even begin to imagine what the last few years have been like for you all, but I am overly impressed all the time by your family. Your life was rocked and turned upside down a few years ago, and you all still manage to create beautiful days for your children (and each other) and the good you are doing for St. Jude, Le Bonheur and the Go Lucy Go Foundation. Both, you and Erik, are extraordinary people -- you lead a life of example -- amazing parents, advocates and champions all the way! I hope you know you have touched the lives of so many people ... and the prayers will never end for you all!

  10. Thank you for sharing about the book. My friends grand niece was recently diagnosed with a brain tumor. I am passing on the information.

  11. This is a hug problem, and I am so glad that you and Erik are promoting this. In the NICU I work in, we have premies being born as young as 21 weeks. I can't tell you the last time that all the multivitamins that have been ordered have actually been in the TPN. I know this because we check everything in the TPN before administering it to our patients. It is so frustrating for me, as a nurse, to be taking care of such a fragile population, and for them to not be getting what they need. I just wanted to say thank you for everything that you are doing.