Tuesday, May 31, 2005
Sunday, May 29, 2005
Friday, May 20, 2005
This is what I walked in on last night in Mom's and my room when I got home from work. Joe had somehow discovered our bandaid collection and was attacking the boxes. The one that seemed to be getting the most action was your Star Wars box.
I was a little worried about it being all used up and possibly thrown away because clearly it was one of your favorites. You "tagged" it like you did all of your Pokemon and other favorite things. I love that you wrote your name on everything.
Nice C3PO, dude! Jack is actually becoming a really good superhero artist. Here is Joe.
You can see Yoda if you look close enough. It looks like Joe got a hold of a few Bugs Bunny and Looney Tunes band-aids as well.
A new Star Wars movie came out last night. It is the last movie of the series. It is supposed to be "dark" and not for kids. Our good friend went and told us what to expect. We will explain it all to Jack and then take him on Sunday, probably.
I am missing you so much this week. The galaxy is in turmoil. There have been a lot of deaths.
Wednesday, May 18, 2005
Do me a big favor and take care of this guy.
His name it Renny. He's the son of a friend of mine and Uncle Bill's, and like you he was just too beautiful to die. You spent time with his daddy, John, when we all went to Spain for Bill and Cristina's wedding.
From: Deborah Schafer [mailto:email@example.com]
Sent: Wednesday, May 18, 2005 2:34 PM
Subject: Some very sad news about our son
We are devastated to be writing you to say that our beautiful baby died on Monday, May 16th. He was seven months old. There are no words to express the depth of our sorrow or the feeling of loss and emptiness that we will carry with us forever. It is hard to make any sense of this tragedy; it is just so very, very sad.
We are awaiting the results of some final tests, but the working hypothesis for how this happened is that his immune system was weakened from fighting a respiratory virus and somehow he as exposed to pneumococcal meningitis, possibly a strain not covered by the immunization. Visits to doctors on Friday, May 6th and again the following Monday for worsening cold symptoms did not point to meningitis. On the morining of Wednesday, May 11th, he was listless and pale and was rushed to the emergency room. The hospital doctors believe that the bacteria may have passed from his newly forming sinuses to his brain in less than 24 hours. His small body was thrown into sepsis shock. Every possible treatment was given to him, and he fought for his life... he died five days later.
No baby should die this way. In lieu of flowers, we'd like to corral the power of our mourning into something positive by inviting you to help support an organization that educates parents about meningitis so hopefully some families will never have to go through this. We will get back in touch with you soon about the details.
It is going to take a long time for us to work through this, so if you reach out and we do not respond, please understand that we are grieving.
In just seven months, our boy had deeply changed our lives. We loved him and miss him so much that we cannot stop sobbing.
Thank you for all your support and love,
Deb & John
Monday, May 16, 2005
Reading this made me sad and mad. I cannot believe that someone with healthy blood who can save this little boy's life isn't going to help him. It doesn't really hurt all that much. I remember your neighbor Jackson's sister donated marrow for his transplant. She was only 5 or 6. She was incredible. I remember seeing her just after she donated. I was so proud of her. I wish that I could have done it for you or for anyone else.
I really wish I could talk to this woman, or that she could read this or the other blog.
May 16, 2005
Ailing Melbourne boy 'out of options' as family struggles to find bone marrow donor
Potential match changed mind only a week ago
BY JOHN A. TORRES
Get set to get wet. Karen Magrath of Melbourne pretends to throw her son, Ty Perkins, into the backyard pool. Ty, 11, suffers from Franconi anemia and desperately needs a bone marrow transplant.
MELBOURNE - Ty Perkins spends his days reading and dreaming of lands filled with dragons, wizards, heroes and magic -- anything but the reality of the bone marrow disease that is killing him.
The Melbourne boy is 11 years old.
What complicates things further is that Ty, being of Chinese origin, is having a rough time finding a matching bone marrow donor. "It is very difficult for African-Americans, Asians and Hispanics to find a bone marrow match because of limited people in the bank," said Dr. Richard Levine, oncologist with Space Coast Medical Associates.
Ty was diagnosed with Fanconi anemia in 1999 while living in an orphanage in Taiwan. He received no treatment because he was an orphan. The only thing that can help him now is a bone marrow transplant.
"He's out of options," said his mother, Karen Magrath.
Magrath and her husband, Steve Perkins, adopted Ty last year, knowing he was sick.
"From the second I heard about Ty, I immediately felt like he was part of the family," Magrath said while pouring freshly squeezed lemonade for the boy and his two adopted Chinese sisters. "I'm just a mom."
When Ty arrived in Florida, he knew only four English words: mommy, daddy, poo poo and disgusting. He also had no idea that he was sick.
"I feel nothing about it," he says bravely of his disease. "I only wish I could go back to school."
But in private, he has already started asking his mother about dying.
"We tell him that the doctors will do everything they can do," Magrath said, making sure the children do not see her cry. "And if he gets tired of fighting then it will be time for him to go to heaven."
Ty has read the Chinese version of every Harry Potter book -- twice. He is tackling one in English. He has also immersed himself in the Middle Earth world of "The Lord of the Rings" and the faraway galaxies of "Star Wars."
When asked who he would choose if he could be anyone of the fantastic characters, Ty shook his head no.
"I would pick any of them," he said, though one would assume an affinity for Legolas of "The Lord of the Rings," since Ty's favorite hobby is archery.
The family suffered a blow only last week when a woman in New York -- miraculously a perfect match -- backed out of donating her marrow.
The family was set to go to Sloan-Kettering Cancer Center in New York for the transplant.
"I was devastated," she said. "I don't know if it's a cultural or educational issue. It's hard to imagine where that person could be emotionally that they would decide not to save an 11-year-old boy's life."
Helen Ng, spokeswoman for the National Marrow Donor Program, said many minorities simply do not know about the procedure or the procedure's importance.
"People don't realize how it affects the community until it becomes your child," Ng said. "This is all about how ordinary people can save lives."
Charles Hayford, professor of Asian American Studies at Northwestern University, said that like many ethnic groups, the Chinese community simply needs to be educated about transplants.
"It was part of the old teaching to go to the grave intact, but then cremation came about," he said. "The idea of being cut up or having blood taken is not very attractive to anyone. If there is an educational campaign then it can become quite popular. But it won't be easy."
There is a blue baseball hat laying on the floor of Ty's room and his prize-winning science project sits in the corner as if its been discarded.
In many respects Ty is still the typical 11-year-old boy.
He loves to play "Need for Speed" on PS2 and he teases his little sister Zoe, calling her "chicken." But Ty knows he is different. He is now dependent on weekly blood transfusions. He tires quickly, loses his breath and bleeds and bruises very easily.
Ty was forced into home schooling last month when his immune system became so compromised that doctors did not want to risk him catching anything from a fellow student. Once a week, though, he receives a packet of letters or drawings from his fifth-grade classmates at Sherwood Elementary School.
"The children really took him in and love working with him," said his teacher, Debbie Mahl. "He is such a delight to have."
The boxes and suitcases packed for New York City serve as a reminder of the cancelled marrow transplant. They don't unpack them, hoping another donor will be found in time.
Ty knows it may save his life, but he doesn't like talking about the possibility of a transplant.
"I'm not sad about being sick," he said. "I'm just chicken . . . a little bit."
Contact Torres at 242-3649 or firstname.lastname@example.org
Sunday, May 15, 2005
Mom and I went out tonight for our anniversary. We got a babysitter from American University for Jack and Joe. Her name was Jackie. She had a lot of earrings. You definitely would have liked her.
When we got home we asked Jackie how much we needed to pay her. She said that she didn't want to get paid. She wanted to donate the money to the Hope for Henry Foundation. She told us that her brother had died. I asked her if she talked to Jack about it and she had.
Mom sends out a form to all of the kids and families who get gifts from the Hope for Henry Foundation that asks them if they liked the gift. There is a question on the form that says,
How did you feel when you opened the gift?
Mom showed me a form that was recently filled out. The person answered that question by saying
Like it was my birthday – but it wasn’t. Happy that someone who doesn’t know me gave this to me and sad because it happened because someone like me died.
Saturday, May 14, 2005
Remember I told you about my friend Matt whose little boy Julian died after he had a transplant. He and his wife Naomi just had a baby named Lucia.
We went to Lucia's baby naming. It was a very happy and very sad gathering. I don't know exactly what they are going through. I guess they are feeling a whole lot of different things all at the same time. We had a son die and a baby born but not in the same order. Joe was born 14 months before you died, and Lucia was born a year after Julian died. I think it must be harder the way it happened for them.
It was a really nice ceremony. Matt is a lot like me I think. It is hard to say everything you want to say out loud in front of people when you have a lot of sad feelings. What he said was beautiful. Naomi, Lucia's mommy, read a poem and it made me and everyone else cry.
Tonight we are going to see Bruce Springsteen. I think that will make me sad.
From: Paul, Matthew [mailto:mpaul@PattonBoggs.com]
Sent: Tuesday, May 10, 2005 10:37 AM
The baby’s name is Lucia Elizabeth Paul Mezey.
Lucia was Jake’s inspiration and seems appropriate for a Cinco de Mayo baby.
Elizabeth is after Naomi’s favorite poet, Elizabeth Bishop. Naomi recommends “The Moose” and “One Art”.
I call her “Lou” after my favorite baseball player, Lou Gehrig. I recommend Gehrig’s farewell address.
Lucia’s Hebrew name is Leah after my Great Aunt Lillian Pose. My aunt was a wonderful and memorable woman but does not have any web links.
Saturday, May 07, 2005
We dropped Mommy at the train station because she was going to New York for a party. Joe, Jack and I went on the DC Ducks Tour. Jack and I learned a lot about Washington. Joe didn't fall in the water.
I kept thinking back to the time when I rode my bike to National Airport looking for you and Jack and Nana on the DC Duck. I never found you.