On August 8, we went to the New York Renaissance Faire. We had a lot of fun, and it was a beautiful day. Saffy and Liam each had their first pony rides.
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| Liam tries to pull the sword from the stone | Saffy as a princess |
On August 2, after Saffy’s clinic visit, we visited the Bronx Zoo! The kids loved all the animals especially the giraffes. Saffy and Liam had a great time in the children’s zoo feeding the goats and sheep. Later we will post more pictures in a photo album. We only spent half a day, so we plan to return again shortly.
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 |
Liam celebrates his 2nd birthday today!
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.
Check out how an Ohio agency is promoting organ donation.
For Father’s Day this year Saffy and Liam made foot prints for daddy, put on his shoes for pictures and gave him this poem:
“Walk a little slower, Daddy,”
Said little children so small.
“We’re following in your footsteps,
And we don’t want to fall.
Sometimes your steps are very fast,
Sometimes they’re hard to see;
So walk a little slower, Daddy,
For you are leading me (us).
And we would want to lead just right,
And know that we were true;
So, walk a little slower, Daddy,
For we must follow you.”
Love,
Saffy and Liam
Yesterday Saffy attended her first day of summer camp at nursery school.
