Sunday, February 29, 2004
Tonight we went to the Purim Ball at school. There was a program and we bought an ad like we did last year. I knocked this one out in 5 minutes. I never showed you the photos of when Mom and Linda and Jack and Ari bought the superhero toys over to the clinic at Georgetown. I'll do that soon.
This ad was a really sweet thing for Helaine, Richard, Susan, Linda and Sid to do.
And I totally wasn't expecting this from your old class. I got all teary when I came across it in the program. Isn't it awesome. It feels good to know that everyone else is thinking about you too.
I like that spring is around the corner. That means that it will be warmer and we can come visit the cememtery for longer visits. Today was nice but we didn't get out there. We took Jack and Joe for haircuts. Joe is a big a crazy nut job as Jack used to be about getting haircuts. It took me and another barber to hold down Joe while someone else cut his hair. Joe was a big sticky goober face with lollipop, hair, tears and snot all over him when we were done. But he looks good now.
I love you Superhero Boy. I realize I haven't told you that a lot lately. Please know it even if you don't hear it.
The other day I was looking through the photos that Norman took of you for the New York Times and I was thinking about how handsome you looked and I was thinking about how nice Norman and Joanna were to you and us.
Interestingly just a week ago or so I called the photographer, Seva Raskin, who took photos of you and us at the Make-a-Wish event we went to way back in 1999. You were the guest of honor at the Willard Hotel, and you lit the Christmas tree and got some nice gifts. Remember the Iron Giant action figure?!
After I saw the photos published in Washington Life magazine, I called or emailed Seva and asked if we could get copies of other photos that she took from that evening. She explained she was busy or something and couldn't help me.
A couple of months went by and I tried again but didn't get anywhere.
Then you died and it became so much more important to me to try and gather up all memories of you. I called Seva and she told me that she couldn't get to the negatives or proofs of the photos because they were being stored in someone's garage. I offered her as much money as she wanted and I'd pay the person storing the photos for their trouble, too, and even offered to help go through the material to help identify the right ones. She told me that it wasn't convenient for her or the person who was storing the photos. Trying not to be a pest and being respectful of the fact that although it might be important to me it might not have been very important to her, I waited another 6 months or so to ask Seva's help. Finally, when I called last week I added an offer to store her stuff in our garage so she could have easier access to her old rolls of film. I told her I'd do whatever I could to make this as easy as possible for her. Again, I told her I would pay any price. Sadly, she told me that she couldn't help me.
I knew it was time to give up even though I didn't want to. I said to Seva that I thought most people in her position would try to make an effort to help someone like me. She didn't like that and said she didn't have to listen to me insult her. And then she hung up. Wow. I didn't expect that.
Thursday, February 26, 2004
February 26, 2004
Rare disease claims Fowler 10-year-old
By Tracy Burton
Lansing State Journal
FOWLER - Family and friends will gather today to lay to rest a 10-year-old boy who touched the lives of many.
Ben Platte, known for his kind gestures and loving nature, died Sunday of Fanconi anemia, a rare bone marrow disease that prevents production of all types of blood cells.
He leaves behind his parents, Adam and Laurie Platte, and brother Mathew, 13, and sister Macy, 4.
"He always had a smile on his face even when he was sick," Laurie Platte said Wednesday.
"And he never complained."
About 500 children in the United States have Fanconi anemia, which can lead to leukemia and other cancers, according to the Fanconi Anemia Research Fund Inc.
Ben was diagnosed with the disease in April and left in early January for Cincinnati Children's Hospital for a bone marrow transplant, the only known cure for the disease.
But Ben's body rejected the transplant.
Laurie Platte said her son kept in touch with the close-knit group of friends from Waldron Elementary in Fowler, which he attended from first through third grade.
Some planned to sing at his funeral today.
"He cared about people's feelings," Laurie Platte said.
"If somebody was hurting or if someone was getting picked on, he was the person to defend them. ... He loved everybody."
Ben attended Most Holy Trinity School in Fowler. Students helped put together a quilt for him that included pictures of them, which were transferred onto each fabric square, and Ben's picture in the middle.
"We're just really going to miss him," Principal Martha Maier said.
"Even though he wasn't in school our children prayed for him every day ... and they'll still keep him in their hearts."
Contact Tracy Burton at 377-1206 or firstname.lastname@example.org.
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Friday, February 20, 2004
Our Internet connection has been all screwed up the past few weeks but a man came out to fix it yesterday. I should be able to keep writing more regularly.
Two weeks ago I took Jack to a University of Maryland basketball game. I am sorry that he'll never have seen a game at the old Cole Field House which is where I used to see Maryland play. Cole Field House was warm and sweaty all year-round. It was great. The new place is as cold as a hospital.
I wasn't so sure Jack was having a good time, but it looks like he did.
I sent a copy of Jack's homework to both Dr. Wagner and to Beverly, your donor. Sometimes I think we all need to reminding that we really did get 2 more years with you. You were a miracle. Thank god Jack is wise enough to understand this. He gets it.
I also ended up sending it to our friends at The Marrow Foundation to let them know how much we appreciate what they do. Their good work shouldn't be measured in lives saved, but in the extra minutes, months and years they give patients, like you, and their families, like us. I think The Marrow Foundation sent it to a man who gave his new blood to someone like you who needed a transplant. He is very sad because the person he helped died.
Monday, February 16, 2004
Uncle Poopy and I went out to San Francisco for Harry's birthday. We stopped in to see our friends before going to the party. It is so beautiful out there. We saw 4 sea lions in the water below.
Harry's birthday was at a flying museum at an airport. This is the airport where he and Loree keep their plane that they fly over San Francisco. We didn't have time to do it, but next trip I know we'll go up for a ride.
Nana and Papa Sy came out for the party too. I was so tired that I am afraid I wasn't much fun. It was good to be able to spend all of that time with Bill. I know he misses you a lot.
Sunday, February 08, 2004
'U' scientists to test stem cell treatments in children
Josephine Marcotty, Star Tribune
Published February 8, 2004
Adult stem cells discovered in bone marrow by University of Minnesota researchers soon will be used for the first time as an experimental treatment in people, according to university scientists.
Researchers at the university's Stem Cell Institute want to find out if they can repair damaged tissue in patients who have had radiation and chemotherapy.
The stem cells were first identified in 2002 by a team led by the institute director, Dr. Catherine Verfaillie. The researchers injected genetically marked stem cells into mice that successfully formed new liver, intestine and lung cells.
Now Verfaillie and Dr. John Wagner, a professor of pediatrics at the university, want to find out if they do the same thing in 16 children with a rare inherited blood disease called Fanconi anemia, which is usually fatal.
"That would be huge," Wagner said, because it would show that the stem cells have the potential to replace unhealthy cells all over the body.
Fanconi anemia leads to bone marrow failure. Children born with it are treated with radiation and chemotherapy to destroy their defective bone marrow.
It is replaced with healthy blood-making cells from a donor. However, the radiation and chemotherapy leave the children with damage to their lungs, liver and intestines.
Wagner intends to extract stem cells from the same donor and grow them in a lab. He plans to inject the adult stem cells in the children when he replaces their bone marrow. He hopes the stem cells will transform themselves into other cells to repair the damaged organs.
While the risks of the procedure are unknown, researchers did not observe dangerous side effects in animal experiments.
If the procedure works, it will have enormous implications for all cancer patients who have radiation and chemotherapy treatments, Wagner said.
"And we hope it can be even bigger than that," he said. Eventually, he thinks he can seed patients' bone marrow with their own genetically repaired stem cells, curing the disease without a bone marrow transplant, he said.
Josephine Marcotty is at
Thursday, February 05, 2004
When I told Jack tonight that I had a dream about Grandma he told me about a dream he had of you. He said that he dreamt that he was walking over to David's house in the morning to go to school and you were walking next to him. Then he asked me how you would fit in Chuck's car. I said that you guys would sit 3 across.
These certificates came in the mail today. Your brother Jack is a really good kid. I like spending time with him. He is turning into a really good skater. I think he has Nana and Uncle Peter's skating genes. Do you remember Nana's speed skating medal that she gave you?
Jack planted this tree for the Israeli astonaut who died when the space shuttle crashed. They just found parts of his diary. They floated to earth after the shuttle exploded. I have to think that his family was sad, but excited to have this. The American's gave it to the Israeli army to translate. I bet Jack could have translated it for them.
Last night I was getting Jack ready for bed and instead of reading his Droon book I suggested we do some Mad Libs. Here are some Mad Libs that you did. Looking through all of the ones we've done I notice that there are a few words that we use a lot,
[Noun] - Potty
[Adjective] - Stinky
[Adjective] - Smelly
[Verb] - Farts
Hmmmm. It does make them funnier. This one is pretty good especially the "Then the male and female get together and 'Pikmynos.'" It took Mom a while to figure out that you wrote "Pick My Nose." That's a good one!
I like the fact that you wrote "Henry" when you needed a [Celebrity] word. I also like that you put down CSA for a [Liquid]. I bet that no other person in the entire universe filling out this Mad Lib used cyclosporine as the word for a liquid.
Lately, I've noticed that Jack has an amazingly big vocabulary and sounds almost like a grown up sometimes when he is speaking. Not too grown up, though.
Of course since I told you that I stopped having dreams, I went and had a dream. It was really strange and nice. I dreamt that I opened a door and Grandma was standing there. It was sunny and she looked young and beautiful, more beautiful than I ever remember. I think this is important because until recently when I thought of Grandma all I could remember was how she looked the evening she died. I didn't expect that at all.
I am watching Justice League. Nobody here watches that anymore. Too bad because it is pretty cool. All Joe wants to watch these days is Ice Age. When I watched it with him this weekend I was really weepy. All of the deaths and separations are bad enough, but I think back to you and I watching this in your hospital room before you died. Now we've seen it about 50 times since the weekend so I don't get sad anymore watching it.
Joe has stopped using his pacifier during the day. I don't think it'll be too hard to "retire" it on his thrid birthday. One thing that is a bit of a problem is that he won't stay in his new "big boy" bed at night. He comes in to sleep with me and Mom in the middle of the night. Even if I put him back in his bed, he comes back in. We're not getting a lot of sleep right now. The funny thing is that it would be okay if he slept like a normal person, but he sleeps like Jack -- across the width of the bed. That doesn't leave much room for me and Mom.
Last night Joe was so tired that he didn't make it upstairs to go to bed. He fell asleep watching, what else, Ice Age, while he was in the "fort" he made on the couch. Joe makes forts by pulling all of the cushions off the couch. He is pretty darn cute.