Monday, July 14, 2003

Dear Henry:

Speaking of courage changing the world...

A Miracle 'Baby Hope'
CBS News 48 Hours

July 11, 2003

Hunter Kelley, 7, is on pins and needles as he awaits the arrival of his new baby brother. His very life may depend on it. Correspondent Susan Spencer reports.

Randy and Christie Kelley of Birmingham, Ala., have just what they've always wanted - a houseful of boys. First came Taylor, then Hunter and finally Parker.

Everything seemed perfect until Hunter turned 5.

"He'd always been small, so we kind of questioned that," says Hunter's father, Randy. "And his blood counts were deteriorating."

At his annual check-up, routine tests showed Hunter's white and red blood cell counts were dangerously low. So doctors ran more tests.

The diagnosis? Fanconi anemia, a rare genetic disease in which the bone marrow fails to produce healthy blood cells, leading to infection, cancer and ultimately, death.

"Very rarely did children make it to adulthood," says Randy. "The average life span is between 8 years old and 12 years old. So it was pretty bleak."

When they married, the Kelleys had no reason at all to think that one, much less both of them, would carry the Fanconi gene.

So the Kelleys sought out Dr. John Wagner at the University of Minnesota, one of the few Fanconi experts in the country. "Most of the children who are left untreated will die of bone marrow failure," says Wagner. "For those that live long enough, they'll develop leukemia."

In fact, Wagner told the Kelleys the disease is so rare that Hunter was lucky his doctor even recognized it.

Now, a bone marrow transplant is the only answer. And Wagner would have done one two years ago if he had found a match. The best prospects for donors were brothers Taylor or Parker, but they were not Hunter's match.

The Kelleys then turned to a bone marrow registry, where the odds of a transplant succeeding were only 1 in 5.

"We still knew that the best chance of his survival was to have a sibling match," says Randy. "We found out there was a way to get one."

They decided to have another baby created in the lab from Christie's eggs and Randy's sperm - by only using embryos that had been genetically screened to be healthy and a perfect match for Hunter. The Kelleys knew this was a long shot. It had only worked for one family.

"We just need a baby that matched my blood so we can have help for me," says Hunter.

Meanwhile, Hunter looks good and seems to feel fine, but everyone is very aware that with his disease, time is a relentless enemy.

It's too risky to go to school given the risk of infection, so Hunter works with a tutor at home - waiting until his new brother arrives.

"We knew that it would not be easy, that the odds were against us," says Hunter's mother, Christie. "But we had to try."

In creating a made-to-order baby, nothing could be left to chance. The Kelleys turned to Andrew Toledo, an Atlanta infertility specialist now faced with a challenge - to produce a baby with the same blood and tissue type as Hunter.

Embryologists used a controversial and cutting-edge technique known as pre-implantation genetic diagnosis, or PGD, to select only embryos with just the right stuff.

But PGD makes some ethicists very nervous because it has implications well beyond just screening for disease. For example, the same technology would have let the Kelleys screen for a girl, or look for physical traits such as hair and eye color.

But the Kelleys had less than a 20 percent chance of producing a matched healthy embryo. They succeeded three times, but Christie couldn't get pregnant.

Insurance covered much of their cost, but many families aren't so lucky. "It's technology for people that can find the financial resources that will allow them to do it," says Wagner.

Finally, more than a year after Hunter's diagnosis and after six months of trying, both embryos took - disease free and perfect matches - twins. But early in the second trimester, the Kelleys lost one of the twins. They were left with one baby with a big responsibility.

"We call this our special baby," says Christie. "This baby is being sent here to us to help him get well."

Every detail of this delivery has been planned for months. And if all goes well, doctors will use blood from the baby's umbilical cord for Hunter's bone marrow transplant - a perfect match.

Cells from the cord should "take" and grow, giving Hunter a healthy new immune system.

Randy is taking no chances. He will hand deliver the blood 1,000 miles from Alabama to Minnesota to be processed for the procedure.

"This is one thing that's going to help save Hunter's life and I want to protect that with my life," says Randy.

During the delivery, Hunter stands at the interior door of the hospital room, waiting and seeming to understand the enormity of the moment. Cooper Graham Kelley is born, and it's clear that he's in perfect shape.

After the delivery, Randy delivers his precious cargo to the University of Minnesota Lab. The actual transplant won't happen for several weeks, but Cooper's perfectly matched blood will be waiting.

Now, it's Hunter's turn. Randy has set up an apartment in Minnesota, and he plans to keep up with his sales job at Kraft Foods via computer - while watching over his son.

The Kelleys won't be together for long. Once Hunter's treatment starts, brothers Taylor and Parker will have to go back to Alabama to stay with Christie's family.

Hunter will undergo a week of powerful drugs that will wipe out his damaged immune system, clearing a way for a healthy new one built with his baby brother's blood.

But it's a huge gamble. Hunter's immune system is about to be totally destroyed, leaving him defenseless against infection.

Randy also worries that this frightening experience will somehow change his son. "Will it kill his spirit," he asks. "Will he be the same cart-wheeling, baseball playing Hunter that I had before?"

Hunter celebrates his 8th birthday on the transplant ward soon after he begins chemotherapy - and the treatment has started to take a toll on him. Four days after his birthday, it's transplant day at last.

"This is the start of what we hope is a healthy life for Hunter," says Christie.

But the coming weeks will be difficult. Hunter's small body will have to adjust to both the drugs and the transplant. On Day 21, they will know if the gift of life from brother has helped save the other.

"He's going in for a bone marrow biopsy," says Randy. "Nervous for how Hunter's going to feel when he comes out of it."

With Hunter under anesthesia, Dr. Wagner takes a sample of bone marrow from his spine. The news is astonishing. The transplant worked - and worked so well that Hunter can now leave the hospital and be reunited with his brothers, family, neighbors and friends.

"We are by no means out of the woods," says Randy. "He can still get fever or infections, but we feel happy because we've come so far this quickly."

"The chances are in his favor that he will do well and be back to normal in the not-so-distant future," says Dr. Wagner.

© MMIII, CBS Broadcasting Inc. All Rights Reserved.

I posted this email on here back in May, but I'm putting it back up to show you again. It is really nice. They seem like a great family. I am betting Hunter is going to do really well. He and Cooper are both very special boys. Here is a photo of Hunter fishing.

From: "Kelley, Randy C"
To: "Lauriestrongin (E-mail)"
Subject: Thank you Henry
Date: Mon, 14 Apr 2003 10:21:22 -0500

Dear Allen and Laurie,

I don't think you know me but boy I sure know you and Henry. I have been struggling with the right time to write this letter. I am the father of Hunter Kelley. Hunter too has FA. On March 15th 2000 Hunter was diagnosed.

I am not going to tell you the feeling because I think you already know. For a year and a half we searched for answers as to how to help Hunter. We attended a FA Family meeting in Sept. of 2000, mainly to meet Dr. Wagner. While at the meeting we learned for the first time about PGD. We had no idea this opportunity existed and soon found out it didn't' for us. In Oct. 2000 we went to U of Minn. for a bone marrow harvest, Hunter's cellularity at the time was 50%. During this visit we met the Nash's and even went to the Mall of America with them. We wanted so badly to try the PGD but it wasn't available to FA (A) at the time. In Oct. of 2001 we learned that FA (A) had been typed by Dr. Auerbach and that PGD was now available to FA (A) patients. It was about this time my wife (Christie) read your New York Times Magazine article. We immediately decided we had to give PGD a try. After 4 cycles and many ups and downs we got pregnant.

Eggs were implanted on Easter Sunday of 2002. On Dec. 9th Cooper Kelley was born. A perfect match for Hunter. On January 21 Hunter underwent a Sibling Matched Cord Blood Transplant at the U of Minn. Today we are back in Birmingham and Hunter is outside shooting basketball. We realize he is by no means out of the woods, but to this point he is doing great.

The reason for writing this letter is to thank you and especially thank Henry. You see if we had never read that NY Times article we would have never tried PGD. Hunter was to the point he needed a transplant and we didn't have long. You determination to succeed at PGD gave us inspiration.

Henry did not die in vain. Henry is a pioneer that has and is saving Lives everyday. I can only imagine what it is like to loose a son. Hopefully you can find some comfort in knowing without a doubt you and your son helped save our son's life.

The TV show 48 hrs. has followed our story from beginning to end. We are not sure when it will air, if ever. Hopefully it too will help someone see the light at the end of the tunnel.

Thanks Henry Goldberg your sacrifice has saved many.

Randy Kelley
CBM - Kraft Foods

You go boy!


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