Hi Malena Fans!

We are getting through it one day, and one prayer, at a time. It gets fun, like when she feels good and when there are events or holidays that bring us out of the reality. But there are not so good times, like after 4 blood transfusions in 2 weeks, when the constant oppressive weight of our situation just sits on your chest like an enormous Chinese man. Which can't be healthy, especially if you anger him.

But the fun stuff brings us back; Suzanne called me Tuesday crying because she was so happy. She brought Jamie to a Camp Good Days (CGD) event (I am discovering they do lots of stuff all year round and all over the area, for the patients and the siblings too) at the Conservation Club in Elma and she said everyone volunteering there was so welcoming and the kids all poured off the shuttles so happy to be there, she told me she was just swept up in how beautiful it all was. Then Friday it was the CGD Halloween party for the kids 3-7, so we brought Malena with Tony and Mack to St Paul the Apostle Church in Depew and I got to see what she meant first hand. There was a volunteer adult there, in costume, for every single kid that came. I even saw an old friend from High School, Dawn (Ginter) Hezel, there volunteering. They did crafts, told ghost stories, watched Saw III and then they each got roughly 62lbs of candy. Which I am finishing off right now as I type. (How many different kinds of Reese's Peanut Butter Cup can they make?) And where do people find these candies from my youth, like the Mallow Cup, Bit 'O Honey, Zagnuts (that’s a funny word) and the Charleston Chew? Do they save them for the last 30 years and just keep giving them out at Halloween? I hope Candy Cigarettes make a comeback, I was up to three packs a day and I just made an ashtray out of sweet tarts and fluff.

Here is another new highlight, a program at Children's Hospital called "Stones Buddies" (name after a kid named Stone) called us to say we were invited by a 10-yr old boy named JT who raised enough money to take 200+ people for a train ride on the Arcade-Attica Railroad. He wore a suit and an engineer's cap and walked up and down the railcars handing out candy to the kids. Very nice little boy with a great heart and the moxy to back it up! Malena and the kids wore costumes and had a blast, first time for me too! (And yes, if you look in the toilet you can really see the tracks go by underneath, so don’t eat anything you find laying on railroad tracks) Speaking of, Tony (5) was walking across a parking lot with Suzanne today, when he bent over and popped something in his mouth and said, "Hey that tastes like peanuts". Who knows with that kid...      The Buffalo News photographer was there and he asked for a shot of Malena and JT together, it is on this past Sunday's Buffalo News picture page with an article. Very cute, even if they got her name incorrect.

Love, Pete

Also: Joe and Liz Cassidy just had a baby girl, they were on the Malena Fest committee and Joe developed and maintains this website, and another committee member, Molly and David McDonald had a baby boy the very day of the 'fest! Megan Elizabeth and Billy Hank (actually William Henry, but I like that nickname and I will buy him beer and smokes in high school if he lets me call him that) were both born quite early but they are gaining weight fast and doing much better, so lots of prayers and good thoughts for those two precious little babies!       

Hello,

We wanted to leave the "Thank you" on the front page for a while, but it is time to get back to it.  Party photos go on the site this weekend.

Today we are celebrating Tony's birthday!  He is 5! WOW!!  He wanted to go bowling. So we went bowling!  Everyone had a great time.  It was a perfect activitiy to do because we were the only ones at the lanes beside our friends the Keglers.  Malena loved it!  It was good for her to get out and do something different and she even got a spare!  She has had 2 hemoglobin and 2 platelet transfusions in the past 2 weeks and it looks like we may be in for another transfusion tomorrow if her platelets continue to drop. She is at 32,000 right now and should be at 150,000-400,000.  They transfuse at about 15,000-20,000.  Last Monday she was at a dangerous 6,000!  The chemo that the doctors think are causing this drop was last given 2 weeks ago today so we should begin to see a rise soon.  She was also admitted to the hospital last Monday for 2 nights due to a fever.  She is home on antibiotics until her counts go up...anyday now!

While leaving the hospital we met 5 yr old Griffin and his family. Griffin and Malena took part in a hospital foundation promo. He also has A.L.L. and is much farther along in the process with just 7 month left until his chemo is over. They were asked to put their handprints on the Hyundai Hands for Hope Car. This vehicle travels around the country on a tour between the national children's hospitals as a fundraiser for Curesearch...a childhood cancer research foundation. Local Hyandai dealers from each area visited make donations to the foundation in honor of the patients in their area. The car arrived in Buffalo from NYC and was off to Cleveland to end the 2006 tour...with 2 more little hands on it. You can see the car and pictures on their website http://www.hopeonwheels.com/ and we will post their photos this weekend as well. Griffin's family supplied a kids train set for the playroom at Children's and our kids have spent many hours enjoying it so it was great to finally meet them!

We start a new phase of chemo, on Wednesday, provided her blood counts are above a certain level.

Malena is a trooper!  Last night when I put her to bed I asked her if she would please make more platelets while she was asleep.  She said, "Sure Mom!"  This morning when I asked her if she made any last night she replied , "Yes, I made 3!"  I love that baby!!! 

Love you,

Suzanne, Pete, Malena, Jamie, Mackenna and Tony-boy!  

p.s. If anyone lost a pair of glasses at the Malenafest, we have them!