children's news online

The following letter was sent to Peter Black, MD, PhD, chair of Childrenís Department of Neurosurgery.

Pictured (l to r): Mayor Mary Manross, Ryan Fox and Don Logan, who hosted the event.

Dear Dr. Black,

I hope you remember Ryan Fox—a patient with medulloblastoma you saved nine years ago. I just wanted to share some wonderful news with you: Ryan is now nine years in remission, and we have been told that in nine months he will be considered clear of the original cancer. We just have to watch out for trouble caused by the treatment in the future, but obviously, wonderful news.

Ryan is now 18 years old, and although the tumor left him blind, and the treatment left him deaf in one ear, he continues to have a wonderful sense of humor and lust for life. He has attended the Life Skills program at Chaparral High School [in Arizona] for the past three years, where he participates in the schoolís Marching and Concert Bands, as well as the Guitar Club. He is also president of the Look Out Club, which raises funds to help the disadvantaged with gifts of food, clothing and toys. Ryan maintains As and Bs, works in the school cafeteria and hopes to pursue a career in the culinary arts.

He has just been selected as the Scottsdale, Ariz. Student of the Year by the Mayor. At the award ceremony, he gave a wonderful speech and named and thanked all of his Boston doctors by name, so you were there with him in spirit.

Our family would just like to share this wonderful news with you, and to express our continued gratitude for your miracle surgery, for the wonderful team you put together, and the amazing doctors—including Dr. Scott Pomeroy and Dr. Akiko Shimamura—provided by Childrenís Hospital Boston and Dana-Farber. You are forever in our hearts and in our prayers.

God bless you,
Michelle and Peter Fox

This letter was sent to Michael Shannon, MD, MPH, chief of Emergency Medicine.

Dear Dr. Shannon,

I wanted to write to tell you about the wonderful experience we had in the Children's Hospital Boston Emergency Department a few weeks ago. Our primary caregivers were Dr. Jeffrey Flaskerud [resident], Dr. Steven Bin [fellow] and Kelly Wicker [Child Life specialist], all of whom were very professional, competent and caring. We were also impressed by all of the helpful and friendly staff with whom we interacted.

My son, Jay Garg, who is almost 3, had sustained a laceration to the corner of his eye. Dr. Flaskerud, who was extremely kind and reassuring, saw Jay initially and determined that the laceration necessitated stitches. Dr. Bin, who performed the procedure, was exceptionally calm, competent and efficient, and Kelly, from Child Life, did a fantastic job distracting Jayóso much so that despite it being next to his eye, Jay never even realized a needle had come near him. In fact, Jay chatted and laughed through the whole procedure. Not one tear was shed in the Children's ED. It was really amazing to watch!

In conclusion, my husband (an internist) and I were very impressed by the Emergency Department at Children's. Most importantly, Jay's scar is healing nicely, and he tells everyone how nice the "doctors" are at Children's Hospital Boston.

Sincerely,
Lorraine Freed, MD, MPH
Division of Adolescent Medicine, Children's Hospital Boston

This letter was sent to Blaise Bourgeois, MD, director of the Division of Epilepsy and Clinical Neurophysiology, to commend the work of Administrative Assistant Lena Wing (pictured, right).

Dear Dr. Bourgeois,
Our daughter, Lillian Powelstock, is a 2-year-old under the care of Dr. Takeoka. Over the last two months, she has been undergoing a work-up for a non-febrile seizure. We are writing to let you know about the exemplary service of one of the members of the Neurology support staff.

Lena Wing, administrative assistant in Neurophysiology, has show consistent kindness and warmth to our family during a very anxious time. She has on several occasions gone far and beyond common courtesy, making an extra effort to get us information we needed, and made certain that our convenience was taken into account. It has been a great comfort to have Lena as our primary contact for organizing Lily's care—she is so reliably gentle and humane, and really put a kind face of the Neurophysiology Clinic for us. We extend our thanks to her, but also wanted you to be aware of her remarkable qualities.

Dear Children's Hospital Boston,

On October 10, 2003, I gave birth to my third child, Kendal Grace Powe. She was born with multiple heart defects and a horseshoe kidney. Kendal was only 4 days old when she underwent open heart surgery at Children's.

The day before her surgery, we met with Dr. Frank Pigula. Instantly I knew he was a brilliant and compassionate man. He came across in such a calm manner, treating Kendal with the respect she deserved and taking as much time as we needed to answer all of our questions and explain the operation in detail, including chances for success. Dr. Pigula told us Kendal's biggest risk was her size. She was only three pounds, nine ounces when they took her to the OR. This was the most heart-wrenching ordeal our family has ever gone through, but Dr. Pigula was right beside us the whole way.

Dr. Pigula saved our daughter's life. I only pray he can do for other children what he has done for our daughter. He is always in our thoughts and prayers. When I look at my Kendal now, growing and smiling and enjoying her life, I think of that frozen memory, as Dr. Pigula walked out of surgery to tell us it was a success.

This letter was sent to Myra Fox, director of Child Life Services, to commend the work of Child Life Specialist Darlene Salvatore.

Dear Ms. Fox,

My 2-year-old son was rushed to the Children's Hospital emergency room last Friday night with one of his fingers partially cut off after getting a door slammed on it. It was such a frightening time for both of us, as well as our entire family.

Luckily for us, Darlene Salvatore, the emergency room's "toy lady," was working that night. She was unbelievable! She not only helped distract Russell from this frightening ordeal, but she also helped me. She offered Russell toys and books, found a TV/VCR with his favorite video ("Bear in the Big Blue House"), and gave him stuffed animals. She also held his hand and stayed with us the entire time he was getting stitched up.

Darlene is such a remarkable, caring person. Children's Hospital is so lucky to have her there in the emergency room to help families in times of crisis. She deserves much appreciation for the important role she has in a child's wellbeing and healing.

Sincerely,
Kimberly A. Nichols

This letter was sent to Florence Joseph, administrative associate in the Department of Otolaryngology and Communication Disorders.

Dear Florence,

Thank you for everything you did to help my daughter's procedure at Children's Hospital Boston to be covered by my insurance carrier. If it was not for your effort and diligent follow-up between all of the parties involved, my daughter would not have received the very best medical care.

Thanks to you, Emma was able to have her trach removed by Dr. Roger Nuss. We cannot express our deepest gratitude to you enough—our lives have completely changed since Emma had her trach removed.

We thank you from the bottom of our hearts! Please know how much we appreciate how much you went out of your way to help us!

Sincerely,
Jeannine & Charlie Greenwood

Brandy King and Jennifer Patashnick of CMCH

Employee at Children's wrote to Michelle Davis, VP of Public Affairs, after the hospital's new brand launch last month. To learn more about Children's branding, visit www.childrenshospital.org/brand.

Dear Ms. Davis,

I just wanted to congratulate your team on a job well done with the new branding effort. As I read through all of the information, I began to realize what an amazing job Arnold Communications has done in identifying these three core qualities of Children's: Optimism, Innovation, and Devotion. As I watched the three television commercials and found myself at that tears-to-my-eyes point, I realized how fortunate I feel to work for a place that genuinely cares so much about improving people's lives. Although I have only worked here for 11 months, and have no patient contact whatsoever, it is a wonderful feeling to know that I am part of a larger team known for improving the lives of children. I hope to be here many more years!

Best,

Brandy King, MLS, Librarian CHB/HSPH,
Center on Media and Child Health

Before coming back to Children's Hospital Boston as President and CEO, James Mandell, MD, was the Dean of Albany Medical College and a urologic surgeon at Albany Medical Center in New York state. Among the many children he operated on was then-7-month-old Molly Stenard. Molly was born with two ureters on each kidney rather than the usual one. Ureters are responsible for draining waste from the kidney to the bladder, and one of Molly's didn't work properly, causing urine to back up into and damage one of her kidneys. Dr. Mandell removed the extra ureter and the damaged part of Molly's kidney, and the now-8-year-old Molly visited Children's in April to thank Dr. Mandell with this thank you letter. She glued kidney beans in the same spots where her own kidneys now function perfectly.

Members of the UNH hockey team visit patient Cole Pasqualucci last month.

To the staff at The Center for Families:

I wanted to send you a quick note to thank all of you for opening your arms and helping us put smiles on the children's faces last week. After leaving the hospital we immediately started to discuss how fortunate we really are, and our visit made us realize how lucky the children are to have such a caring support staff at the hospital. Your work is truly inspiring and did not go unnoticed by us. The doctors and nurses are the ones who heal and serve the children's medical problems, but you and your staff at the Center for Families serve an equally crucial role in dealing with the emotional needs of the children and their families.

We at the University of New Hampshire wanted to tell all of you how important we think your department is to the healing of children at the hospital. My wish is to return in the spring with more toys and teddy bears. I have received a $1,000 donation from Hannaford Supermarket to donate to a charity of my choice, and after our visit last week, I decided that there is no better way to help the patients at Children's than to put smiles on their faces during a time when a smile is often difficult to find. I hope all is well, and tell the children we say hello.

Dear Child Life Services Staff,

Two years ago, on Jan. 24, 2002, my grandson Nathan Alfred's birthday, he was rushed to Children's. My daughter called me frantically asking me to meet her at the emergency room. "Nathan's daycare provider called me; they're in an ambulance on their way to Children's. She thinks he's having a seizure," she said.

I immediately left my office at 1295 Boylston and pretty much ran to the main hospital. I met my daughter in one of the treatment rooms where Nathan was being treated by two ER physicians and a nurse. He was not unconscious but he didn't recognize his mother or me and was not responsive in the way a three-year-old normally would be. After several hours in the ER, Nathan was well enough to be discharged. What should have been a day to celebrate had turned out to be a frightful event. But when the nurse heard it was Nathan's birthday, she called Child Life Services. They came to the ER with a toy, stuffed animal and balloon, and then we all sang Happy Birthday to You. But the best gift of all was to see the smile on his face, and on my daughter's.

I know that this is little overdue but as his birthday approaches, I remembered that I promised myself I would not forget to take a few minutes to say "thank you" for making such a difficult and scary time easier for my grandson. You are truly gems. This is one of the many reasons why I choose to work here at Children's.

Dear Emergency Department Staff,

After nearly four years as an employee of Children's, I finally and unfortunately had to experience the hospital from the eyes of a patient. My older daughter, Annalisa, broke her ankle and I brought her to the emergency room on a Sunday afternoon.

Well, the place was just mobbedóstanding room onlyówith coughing, sneezing, bleeding kids everywhere. By my estimate, there had to have been 50 to 75 people in the waiting area. Despite all of this, the place ran like a watch. The coordination between Triage, the Registration Area and the Treatment Area was very impressive to watch. I must admit that I thought sooner or later, someone was going to snap, but that was never the case.

The nurses, admin folks and MDs were amazingly pleasant, kind and helpful, despite several especially distressed parents and some tough language barriers. Even my 8-year-old daughter said to me, "That nurse is so nice even though that lady is yelling at her!"

Though I feel guilty saying this, I must now admit that I wore a Children's sweatshirt thinking that I would get some type of special treatment. Well, I did get special treatment... just like every other patient and family there who did not have a silly sweatshirt on!

I have been to emergency rooms a dozen or so times in my life for a wide variety of reasons, but I have never left one of them as impressed as I left the Emergency Department on that Sunday. I will happily go back to my small and comparatively quiet department, but not without a new respect for you and your folks down there. My daughter left with a pretty blue cast and, she says, a desire to become a nurse at Children's.

Dear Children's Hospital Boston,

Adre du Plessis, MD, with Elijah

In June 2002, a routine ultrasound examination revealed that one of my unborn twin boys was suffering from enlargement of the brain ventricles and what appeared to be a form of hydrocephalus. With this stressful news, I went into labor at just 26 weeks pregnant. I was admitted into a local hospital and transferred to Brigham and Women's Hospital so that I could consult with a neurosurgeon at Children's.

An ultrasound and fetal MRI showed that the hydrocephalus was caused by a hemorrhage in the brain. Dr. Carol Barnewolt, chief of Ultrasound in the Radiology Department, showed so much compassion to my husband and me and set our minds at ease as much as she could. She answered all of our questions and explained everything she saw, and I felt very comfortable with her expertise and knowledge. I will be eternally grateful for the caring that she showed to us.

I was brought to Children's in a wheelchair for an appointment with neurologist Dr. Adre du Plessis. I felt numb and was nervous that my husband wouldn't make it since he was coming from work. I wasn't sure that my babies would live. I let my whirlwind of emotions loose right there in the waiting area, but Dr. du Plessis handled my emotions with compassion until my husband arrived, and then he explained to us the possible outcomes for Joshua and Elijah. Although he couldn't tell me whether my babies would survive, he gave us the hope that he would do everything in his power to help them. We have had many visits since then, and I can tell that when Dr. D holds my son, he truly does hold a place in his heart for him.

To Dr. Barnewolt and Dr. du Plessis, I thank you from the bottom of my heart and soul for everything you have done and continue to do for our son and family.

[The boys are now 16 months old and doing well. The family is attempting to raise money for a special van for Elijah, whose hydrocephalus seems to have stabilized while treatment for cerebral palsy is ongoing. For more information, visit their Web site.]

On November 7, Medicine Patient Services and the Allergy/Immunology Department offered a day-long seminar to update the asthma management skills of nurses and nurse practitioners who care for children in both the hospital and the community. Afterword, Amy Burack, RN, manager of Community Asthma Programs, received the following letter.

Dear Amy,

I must tell you again how excellent I found the Pediatric Asthma Update. I hope that and all of those involved in planning this event realize that their efforts were very well spent and productive.

Because of this seminar, I feel more current in my knowledge of asthma management and have clearer ideas about how I want to coordinate care for my students with persistent symptoms.

Just last week I had an eighth grader in my office. I have known this boy for five years, but just learned that he considers himself unable to run because he has asthma. This is an active child who is always the first to be out on his bike. But he has been experiencing limitations that I have been unaware of. I am now working with his mother and his pediatrician to try to reduce his symptoms and improve his overall sense of well-being. Because this is a family that faces many stressful issues, any improvement in his condition is likely to have positive repercussions in other aspects of their lives.

Thank you for organizing a day that helped me to energize and organize my approach!

Cathryn Stein, RN
Boston Public Schools

Dear Children's,

My daughter has been a patient at Children's on a number of occasions in her four years of life. About a month ago, my family ended up at Children's again, and we stopped at the information desk for directions. That's when we meet security officer Marcus Johnson. He happily gave us directions, and then noticed that my little girl was sad. He talked to her a bit and then reached behind the desk and gave her a big doll. It was the first smile I had seen on her face in two days. Later that afternoon, Marcus arrived at my daughter's room. He apologized that it was time for the doll to go back to the front desk. To replace it, however, he brought my daughter a large stuffed horse and a balloon.

What a wonderful employee you have in Mr. Johnson. He positively affected both my daughter and me more than anyone else we interacted with in our two-day stay. His kindness and warmth were so invaluable during our difficult situation. He truly lifted our spirits that day, something no pill or doctor was able to do. For this, I will always be grateful.

Dear Children's,

I am the mom of a little boy who was born prematurely with hydrocephalus, and while I was saddened to learn of the Department of Public Health investigation of Children's, I also wanted to let you know that I have dealt with many different services within the hospital over the last four years and I am completely indebted to Children's.

Yes, doctors are human and can make mistakes. But if it weren't for Children's, my son James, who has had close to 30 brain surgeries, would not be sitting on his bed and laughing and smiling at the moment. Since 2000, I have noticed several changes to the care of children like my son, and they have been for the better and made the system safer. I also have noticed that over the many hospitalizations that we have been through, the doctors have been around to communicate, and the overall communication seems to have improved.

I felt compelled to write because your hospital is not the only one in the world where things can go wrong. Thanks so much for the wonderful care that our family gets on 9 North by doctors and nurses, but also throughout the hospital—by the valet parking attendants, social workers, cafeteria and facilities workers, and information and security people. I am so thankful to have a hospital like yours around.
Thanks to all of you for a great hospital, and keep up the good work.

With sincere thanks,
Kathy Cowhig

Read more letters at gratitudes.chnews.org. To submit letters you have received, contact news@childrens.harvard.edu.

Dr. Mandell,

We are writing to thank you from the bottom of our hearts for the great hospital you have in Boston Children's. Our daughter Isabella had open-heart surgery in August by Dr. John Mayer [senior associate in Cardiovascular Surgery]. Dr. Mayer saved our daughter's life, and for that we will be eternally grateful.

Not only is Dr. Mayer a fantastic surgeon, but he also made us feel a little more at ease and a little less scared after he explained what he was going to do. We have met a lot of doctors in our day and Dr. Mayer is a very compassionate man as well as a brilliant surgeon. When we came to Children's, everyone there was nice and friendly (you don't see that at too many hospitals these days) and they all made a very difficult time a little easier for both of us.

Our society today likes to regard actors and athletes as celebrities. We wish people held the same high regard for those like Dr. Mayer and everyone else at Children's Hospital. You are real heroes who save the lives of children such as Isabella.

Jennifer Carlstedt was born in 1965 with two congenital heart defects, and her family came to Boston for treatment by Alexander Nadas, MD, a founder of the field of pediatric cardiology who retired from Children's in 1984 and died in May 2000. Jennifer, who continues to see Children's cardiologists as an adult, recently wrote this letter in appreciation of the many doctors and nurses who gave her a healthy life.

Jennifer Carlstedt with family

Soon after my birth in 1965, my family exhausted the south Florida medical community searching for help in treating the Transposition of the Great Vessels (TGV) and Ventricular Septal Defect (VSD) with which I was born. My pediatrician recommended that my family travel to Children's Hospital Boston to see Dr. Alexander Nadas. Over the next three decades I returned to Children's numerous times for various treatments, and as recently as this year I was treated by Dr. Frank Cecchin, [associate in Cardiology], who successfully treated my atrial flutter.

It is hard to put into words the feelings of gratitude and awe I have for the doctors and nurses at Children's. By allowing themselves to be God's hands, they have given me a chance to grow up healthy and know the joys of life. To me, the birth of my son was the miracle that Dr. Nadas put into motion way back in 1965.

Jennifer J. Carlstedt