Usticke Family Blog

Saffy had an appointment with her transplant surgeon this morning. Everything is very positive; we couldn’t be happier.

She’s scheduled for a CT scan next month to look for any tumor recurrence — 11 months after her last one in October 2003. We don’t expect any bad news, but we need to keep an eye out because there haven’t been any reports of transplant recipients surviving hepatic angiosarcoma. However, most died within a year, and Saffy is well past that at 2.5 years. She’ll probably receive one more CT scan a year later in 2005, which should be her last.

We also met with Saffy’s endocrinologist; and, now that she’s turning three years old, she’ll be weaned off Synthroid (synthetic growth hormone) over the next six weeks. Physically, she’s about the size of a 2.5 year old, so she’s catching up nicely.

Interestingly, with Liam turning two years old last week, we took the same portraits of him that Saffy had a year ago when she turned two. It’s an interesting comparison to see how further along he is at two than she was a year ago. (Compare her hanging feet with his feet on the ground.)

Saffy at 2 (Aug 2003)	Liam at 2 (Jul 2004)
Saffy at 2	Liam at 2

Another plug for a directory that listed us: Blogarama.

We have started a support mailing list for families of children suffering from hepatic infantile hemangioendothelioma and related issues such as liver hemangiomas, pediatric angiosarcoma, and liver transplant.

A quote my father sent when Saffy was hospitalized. He died last year.

Here is a wonderful quote from the screenplay of “The Night of the Hunter:”

Children are man at his strongest, they are possessed, in those few short seasons of the little years, of more strength and endurance than God is ever to grant them again. They abide.

Blogwise was nice enough to list us in their directory, so I’m returning the favor by plugging their site.

Check out how an Ohio agency is promoting organ donation.

Added a chronicle of Saffy and Liam’s growth to their Photo Albums on the main web site.

Saffy

Liam

I recently exchanged the following email, which I’d like to share with everyone.

[quoted email]

How old was your daughter for the liver transplant? Since I know absolutely nothing about this — does the organ grow with the rest of the body? Was the donor another kid? Or an adult? Does it ever need replacing — like a car part that wears out?

“You guys” (your daughter and family) are very brave and strong for being able to go through this. Takes lots of faith and hope to stay above it all.

Thanks for your questions.

Saffy was five months old when she received her transplant. Yes, the organ grows as she grows. The liver is a pretty amazing organ — it’ll shrink and grow to fit the person. That ability even allows living donors — people give up half their liver to someone else, and both halves (in the donor and the recipient) regrow to the proper size.

Saffy received a liver from a cadaveric donor — from a 26 year old woman who suffered some sort of brain condition that killed her. Further, it was a split liver transplant. Saffy got the left lobe (30%) while an adult recipient got the right lobe (70%). They literally saved two lives with the one organ!

With luck, her liver should last the rest of her life. It doesn’t “wear out” per se, but if it’s damaged somehow (infection, communicable disease, cancer return), then she could very well need another transplant.

Saffy’s condition is exceedingly rare. When we researched it two years ago, we only located reports of three children and 14 adults with hepatic angiosarcoma treated with liver transplantation. Unfortunately, not a single one survived — the tumors always recurred. The leading text on liver tumors states, “Most children with angiosarcoma of the liver have died within 2 years; the mean survival period in [a study] was 10 months. Therapy, consisting of surgery, radiotherapy, chemotherapy, or combinations thereof, has been ineffective.”

Needless to say, Saffy is unimpressed with those statistics. She passed two years post-transplant in January, and she’s doing absolutely wonderfully. She’s a tough little girl, and we’re very hopeful that she’ll continue to beat the odds and be just fine.

Thanks for the kind words and indulging me in telling this story yet again. My wife and I feel we’re the luckiest people in the world for having her.

BTW, if you want to donate life, you can sign up for the New York State Organ and Tissue Donor Registry. Information is also available at www.donatelife.net.

Alec

Take a gander at what www.usticke.org looked like 7 years ago.

The Internet Archive Wayback Machine is a great resource to see how web sites looked in the past.