Clay, T.J. and Dalton Williams relax on their state-of-the-art clubhouse, while parents Andrea and Matt look on. The clubhouse was donated to Clay from the Make A Wish Foundation after Andrea sent a letter telling representatives of the foundation about Clay's Faconi's Anemia disease. Photo by BRANT STACY/The Kansan.

Family optimistic about rare disease

By BRANT STACY
Kansan Staff Writer

Clayton Williams' mom knows her son is a lucky boy.

Clayton, who was diagnosed with Fanconi Anemia at age 6 months is now 11 years old and a student at John F. Kennedy Elementary School. His mother, Andrea, said she is glad doctors discovered Clay's condition early after she questioned the way her son's thumbs looked.

"I first noticed his thumbs were a little deformed, which is one of the signs someone with Faconi's has," Andrea said. "I was then told to go to Children's Mercy Hospital where genetic doctors diagnosed Clay with the disease."

Faconi's Anemia, a blood disease that can eventually develop into leukemia, is a result of defective recessive genes inherited by both parents. Besides leukemia, the disease can lead to bone marrow failure. Clay's mother and his biological father both carry the recessive trait. Andrea, who was adopted said she was not aware she or her ex-husband carried the gene. It wasn't until Clay's diagnosis that caused her to get in contact with her biological parents. She then discovered her dad was a carrier, also.

"Because both my ex-husband and I were carriers, Clay had a one in four chance of in developing the disease," Andrea said. "My other sons are most likely carriers and do not have the disease."

Because Clay was diagnosed so early, Andrea said it has allowed her and her family time to seek the right medical help Clay needs. Once a month Clay gets a biopsy at Children's Mercy Hospital in Kansas City, Mo., where his white blood cells are properly monitored. Every six months, he travels to Fairview Hospital in Minneapolis, Minn., where doctors have been given more than $25 million in grants to study the disease, said Andrea.

At this time, Clay's parents and doctors are postponing a transplant, which could cost at least $295,000. Andrea said one of the reasons she and doctors delaying the procedure is because they feel those specialists studying Faconi's will find better methods of treating it.

-----Original Message-----
From: Amy Yonts [mailto:yonts@charter.net]
Sent: Thursday, December 30, 2004 12:41 AM
To: lstrongin@starpower.net
Subject: hello



Hi Laurie,
I don’t know if you remember me, my name is Amy and I was one of Henry’s nurses on the Children’s Center in Minneapolis. I was with you a lot before he got really sick, but I was visiting in California when he died. I said good-bye to him when he was sleeping the last night I worked with him because I was hoping he would be back with your family recovering at home when I got back from my vacation. Instead I got a phone call on my flight home and learned of his death, I was so devastated that my good-bye turned out to be a final one.

I was thinking of Henry this year during Hannakuh, because he enjoyed opening the many presents from so many people who loved him. I remember him listening raptly to King Arthur, I think it was something his Uncle sent him. You told us about his teacher that loved him so much she wanted to have him back again. He got big eyes, was silent and beamed. Your love for each other made that room full of light and warmth. When I see the candles, I feel they symbolize the brightness and love your family embodied those evenings.

I wish you the best of everything,
Amy

It is Jack's birthday today. He is 8 years old. I am really happy for him but it is not far from my mind that you never made it to 8. Now Jack is clearly the oldest. He told Mom that he doesn't "know" Joe like he knew you. You guys were so close in age and so close as friends, and it is very different for Jack and Joe.

This is the birth announcement that Mom and I sent out when Jack was born.



We had birthday chocolate chip cookies instead of cake because Jack isn't a big cake fan.

Henry's Gifts: Fairview-University pediatric patients inspired to 'live well and laugh hard'
Contact: Ryan Davenport, Fairview Health Services Media Relations, 612-672-4164

MINNEAPOLIS (Dec. 30, 2004) – In his short life, Henry Goldberg loved to laugh. Even a courageous battle with Fanconi Anemia, a deadly genetic disease, didn’t take away his mischievous grin or his sense of humor. Henry underwent a bone marrow transplant at Fairview-University Children’s Hospital in July, 2000. Although he ultimately died from his disease two years later, his family has a message for patients facing devastating illnesses: Live well and laugh hard.

Henry’s parents, Laurie Strongin and Allen Goldberg of Washington, D.C, were so inspired by their son’s strength of spirit that they created the Hope for Henry Foundation. The foundation will provide up to 200 Fairview-University pediatric bone marrow transplant patients or oncology/hematology patients with a gift of electronic entertainment. Patients age 2 to 18 can choose a digital camera, a portable DVD player, a Gameboy or a personal CD player.

“Henry embraced each opportunity for living completely and reminded the rest of us to do so,” said Laurie Strongin. “To honor Henry’s legacy and share his magic making, we started the Hope for Henry Foundation to help other kids with life-threatening illnesses to live well and laugh hard during their struggles.”

“The gifts from the Hope for Henry Foundation will make a big difference in the lives of children cared for in our hospital,” said Stacy Stickney-Ferguson, LICSW, a social worker with Fairview-University’s Blood and Marrow Transplant program. “These gifts will provide an emotional lift to our patients, many of whom have been in the hospital for months.” Since the program’s inception, University of Minnesota physicians have performed more than 3,700 blood and marrow transplants, making it one of the largest and most accomplished BMT programs in the world.

Henry Goldberg was a patient at Fairview-University Children’s Hospital for parts of two years, beginning in 1999. The foundation is also providing gifts to pediatric patients at Georgetown University Hospital in Washington, D.C., where Henry was also cared for prior to transplant. Patients who receive chemotherapy or bone marrow transplants often must remain in protective isolation for many weeks or months.

“Henry would have wanted to hand these gifts out himself,” said John Wagner, M.D., Henry’s primary physician and a University of Minnesota specialist in pediatric bone marrow transplantation. “While we as doctors and nurses are so focused on providing the best medical care available, gifts like these really boost the spirits of these kids, making a real difference in their lives.”
# # #

The Hope for Henry Foundation is doing really well. We are putting up a website to let people know what it is all about. I was looking for a picture of you and Jack watching the portable DVD player that we can put on the site.

Unfortunately the player is cut off in the photo.



It is broken now and costs too much to get fixed but I don't think I'll ever throw it away. It means too much to me.



I bought this for you when we made it to Minnesota for your transplant. It was one of the first ones ever, if not the first. There is a part of the ABC Nightline program on you that shows me holding the player so you can watch a Pokemon movie while you are in the CAT Scan machine. I hope that the kids who get DVD players from the Hope for Henry Foundation enjoy them as much as you and Jack.

Jack did these in school. His favorite book is the DC Comics Encyclopedia. He reads it every day over and over.





Joe is a superhero. His name is "Naked Boy." His superpowers are pooping on the potty and not making a fit when he gets his hair cut. I am going to take off some time from work next week and I will give you my Joe update.

Joe and Jack went to the doctor this morning with Mom. We didn't know it but Joe dislocated his elbow yesterday. He was in a great deal of pain pretty much all last evening and night. We didn't know what happened to make his hand hurt and couldn't see anything and weren't sure if we needed to take him to the hopsital for an x-ray. He has complained about the same thing 2 other separate times months ago and then it went away before we went to the doctor. We thought it was the same thing and it would resolve itself.

The doctor said that his elbow went back into place the other times and it was still dislocated when he took a look this morning. He has something called "nursemaid's elbow".

Jack has a bad cough and Joe may have an ear infection on top of his elbow problem.

Yikes.

I did a little more digging and look what I found!



I ordered a bunch of these. How cool is this going to be. I bet the boys are gonna want the pirate bandaids. You would have been all over these.





I bet there are other good ones out there like these.



That is my next mission.

Love you, Monkey Man.

I have told you about Henry's Toolbox before but never showed you it. This is your old toolbox that we brought over to the clinic at Georgetown and filled with different kinds of bandaids, like Spongebob, Barbie and Scooby Doo.



We wanted to make sure the kids have a choice of fun bandaids.



I just found these. They are different but maybe too gross or grown up for the kids at the clinic.

These are pictures from Minnesota. They are handing out Hope for Henry gifts at Fairview, just like Georgetown.





Giving kids in the hospital stuff like Gameboys and DVD players helps them relax. Here is a story about that.



Video Games Used to Relax Kids in Hospital

LINDA A. JOHNSON; Associated Press Writer

TRENTON, N.J.

Letting children play video games on a Game Boy in the operating room before undergoing surgery can help relax them better than tranquilizers or holding Mommy's hand, researchers say.

Doctors found that allowing children a few minutes to play the games reduced their anxiety until the anesthesia took effect.

Dr. Anu Patel conducted the study after noticing a friend's 7-year-old son was so absorbed with his Game Boy at a restaurant that he ignored the adults and the food at his table.

"We find that the children are just so happy with the Game Boy that they actually do forget where they are," said Patel, an anesthesiologist at University Hospital in Newark who plans to present her findings Saturday at a medical conference.

Patel said the findings could be helpful because many parents do not want tranquilizers given to their children.

Youngsters who are traumatized before surgery run the risk of long-term psychological problems, including nightmares, bed wetting and fear of being alone.

In addition, strapping a restless, frightened child to an operating table can cause a temporary blood pressure spike, make the heart race and trigger stress hormones that can delay healing, said Patel, also an assistant professor at the University of Medicine and Dentistry of New Jersey.

Other hospitals have long used teddy bears and games to distract children before surgery, but those techniques are generally employed in patient rooms, playrooms and waiting areas, not in the operating room. At Children's Hospital of Philadelphia, kids are encouraged to play in waiting areas before surgery and to take a "comfort item" - occasionally a Game Boy - into the operating room.

A Boston company, Design Continuum Inc., has begun testing a combination anesthesia mask and headset that would allow patients to play video games or listen to music, but distribution is years away.

Patel studied 4- to 12-year-olds in three groups of 26 children each. All had parents with them in the operating room until they were anesthetized. One group also got a tranquilizer, and the third group played with a Game Boy.

On average, the Game Boy group showed no increase in anxiety before surgery. But on a standard, 100-point scale for measuring preoperative anxiety, the tranquilizer group jumped 7.5 points and the parents-only group 17.5 points.

Shani Willis, whose 10-year-old daughter Nykia had a cyst removed at the Newark hospital Tuesday, said the girl was nervous until she got a Game Boy. She then relaxed and played with it until she was anesthetized. "It was like she put everything out of her mind," Willis said.

The hospital is considering making Game Boy use standard before pediatric surgery.

Dr. Erin Stucky, head of the American Academy of Pediatrics' committee on hospital care, said Game Boys should be used more widely in hospitals if a larger study produces the same results.

"This is great because this offers a wonderful ability to have the child's attention immersed elsewhere," she said.

All of your DC cousins and aunts and uncles and Nana and Papa went out for your deathday last weekend. First we went to lunch at your favorite restaurant, Cactus Cantina, and then we all went to the cemetery. At lunch, Nana had brought with her all of the photos that she had of you that she thought Mom and I might not have seen before. That was great. Here are some of them.

















The cemetery was pretty tough. We all said some stuff. Mom talked about you and how many lives have been changed and saved since you died. I said a prayer that I like. Everyone walked over to visit other graves and I was left alone with you. I kissed your headstone and then I just knelt there and looked at your grave and sobbed and sobbed.

I went over and visited Grandma and you know something, I cried there, too. That was a first for me. I think I am just starting to really get sad about Grandma's dying. You were so sick and then you died and I just don't think I ever had time.

I miss her. It is tough not having a mom. It is tough not having you.

Today is my birthday and the anniversary of your death -- by the Hebrew calendar. Mom and Joe and Jack and I went to synagogue this morning. Helaine came too. That was really nice of her. I wore your Pokemon kippah. There was a Bar Mitzvah. It was a guy who went to JPDS. That was a nice coincidence.

Mom and I went out for dinner tonight. I wasn't really into "celebrating" my birthday. Is it too late to change my birthday? I don't think it'll ever be "Happy" again as long as it is a week after you died.

I again didn't have a clue what to wish for when blowing out the candles on my birthday cake. I went blank. Next year I'll figure it out in advance.

There are a lot of candles this time of year. We just finished lighting eight days of Hannukah candles and then it was time for your candle.

I took your Yahrzeit candle into our room. It was downstairs in the kitchen, but I really felt like it was leaving you there while the rest of us were upstairs cozy in our beds.



Sometimes it feels like two years, sometimes it feels like less, sometimes it feels like forever.

I love you.

I just read the blog I kept when you were dying. It is late and the battery on the computer is running out. I wonder if I'll be able to go to sleep. I think your deathday is harder for me than your birthday. I wonder what that means. I wonder if that will change.

I wish I could cuddle with you one more time.

I miss you.

I love you.

Good night.