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Kendall's last birthday, Holtsville Park, May 2006.
Third birthday, at Nonni and Poppi's house.
Kendall and Zachary with Mimi (my grandmother) at one of their third birthday celebrations - Morgan Center, 2005. Mimi passed away a few weeks later after her own battle with cancer. She was a huge part of the boys' early life, and Zach still remembers her. She will definitely be on our minds on Mother's Day too.
Paulette, the head of Child Life at Stony Brook, with Kendall and Zachary at yet another 3rd birthday celebration. This one was in their clinic. I was absolutely stunned when we went in for a routine clinic visit and there was a huge cake, with a picture of Thomas the Train, and wooden train whistles on it! The boys were so thrilled. There were gifts for them, and goody bags for all the kids who went to clinic that day (along with cake!). Here they are with Dr. Mueller (you can see Dr. Prakash in the background too). Yo can see why Kendall loved his doctors and nurses. He felt truly loved and special there.
Some of the children at the Morgan Center on their third birthday. Nancy is holding Drew, who died last January.
KENDALL'S PAGE
May 07, 2002-April 11, 2007
Kendall was diagnosed with Stage IV neuroblastoma, a very aggressive childhood cancer, just after his second birthday. He fought with all he had for amost three years, but unfortunately he sucummed to his disease on April 11, 2007, just a month shy of his fifth birthday. Kendall has a twin brother,Zachary, who misses his very much. We all do.
Zachary and me at his Spring Shiai.
Zachary and The Easter Bunny at Tanger's, Deer Park, 4/11/09.
SpiderZach! - Tanger's, Deer Park, 4/11/09.
Zachary on the Wetlands Walk, Sweetbriar Nature Preserve, 4/5/09.
Zachary near the Bald Eagle cage at Sweetbriar.
Jamie's Legacy Sunflower... day 3! Jamie was a little boy in England who died not long before Kendall. He had planted sunflowers at school, and took home a seed head. Since he died, his mom has been planting the seeds from that plant, and saving them, and she has sent them all over for others to plant. She sent me six seeds, and this is the strongest one so far. I'll keep you updated on its growth.
SOME FACTS ABOUT PEDIATRIC CANCER:
Childhood cancer is the number one disease killer in children.
Neuroblastoma is the most common cancer in infancy.
Neuroblastoma is the most common extra cranial solid tumor cancer in
children.
Every 16 hours a child with neuroblastoma dies.
There is no known cure for neuroblastoma.
Nearly 70% of those children first diagnosed, have disease that has already metastasized or spread to other parts of the body. When disease has spread at diagnosis and a child is over the age of 2 there is less than a 30% chance of survival.
Childhood cancer is the leading cause of death by disease in the US and it
kills more children per year than cystic fibrosis, muscular dystrophy,
asthma and AIDS combined.
There are 15 children diagnosed with cancer for every one child diagnosed
with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for
research per victim of pediatric AIDS and only $20,000 for each victim of
childhood cancer.
The National Cancer Institute's (NCI) federal budget was $4.6 billion. Of
that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.
Kendall
When I was asked to speak today about Kendall, I was truly honored and humbled. I was also concerned that I could not put into words, this wonderful sweet boy who was a pleasure to know, to love and to teach.
How do you put into words�his smile. That smile with a sparkle in his eyes. Kendall always smiled no matter how he felt. A smile that reassured you, that it was OK. A smile that regardless of what was happening in his world made you smile. Not just a smile, that wry crooked smile that said, I know something that you don�t know- smile.
How do you put into words�a happy child with his father�s resolve and his mother�s inner strength, always a hop and a skip, always ready to laugh and looking for the punch line. And once laughing, leading his brother Zachary to follow close behind.
How do you put into words�Kendall�s desire to have fun. It was the ultimate goal. With the class songs, he was having so much fun that he had an extra beat. And you should have seen him do the chicken dance, he would take it to a whole different level.
How do you put into words�Kendall�s leadership and the things he and Zachary created together, like rolling down the hill after class with their classmates, outside The Morgan Center. On sunny days, this is how they ended every class with laughter and smiles. Kendall also had a lot to add to Show & Tell. He loved to share his toys, as well as souvenirs he got from his outings with Mommy, Daddy, Nonni and Poppy. Kendall and Zachary once had nothing for Show & Tell, so they sat in the front of the room and said, �Ask us where we�ve been�. Kendall also loved to ask questions of the other children which always included, �Where do you keep it?� & �Do you sleep with it?�. This was very cute, especially when Ashley brought her teenage sister for Show & Tell.
How do you put into words�A boy who adored his family. Sometimes Kendall would not be in the mood for arts and crafts. Then he would learn that it was for Mommy, or Daddy. He would then put all his effort into his project to make it just right. Kendall of course adored his brother, and even though Zachary was protective of Kendall, Kendall was always trying to protect Zachary.
How do you put into words� Watching a child go through his passions from Thomas the Tank, to Rescue Heroes, Power Rangers, Hot Wheels, Ninja Turtles, Webkins and eventually becoming the resident expert of Star Wars. Trust me, you could ask him anything.
How do you put into words �. the heaviness I now feel in my heart for a little boy who means so much to anyone who he has touched. But I assure you this beautiful little boy Kendall and his wonderful family will always be in my heart, and will always be a part of The Morgan Center.
Lastly, how do you put into words� what Kendall has taught us. To laugh when its painful, to smile even though you may not feel like smiling, to lead when it would be easier to follow, to protect those who are protecting you, and to love because love follows you everywhere.
Love,
Miss Nancy (& Mr. Rod)
I have NB HOPE bracelets and car magnets for anyone who wants one.
Order your NB HOPE Bracelet today.
Want to help? Give up your lunch for Neuroblastoma research. Together, we can find a cure. I've given up one lunch a month for the next year. Click on the fork ribbon below to donate.
Kendall's Photobucket site.
Journal
Thursday, May 7, 2009 10:53 PM CDT Happy Birthday Kendall.
Today was a rainy miserable mess. Kind of matched my mood. Due to the weather, I didn't get to the cemetery as I planned. I'll try tomorrow, but it may not be possible. Zachary's baseball game was rained out, which was just as well because he was anxious to get to Friendly's as we had promised. We had a nice dinner with my mom and Fritz, then a quick trip to Toys R Us. Unfortunately, due to the wait at the restaurant, and the late start (took Neil a while to get home in this weather), it was getting ready to close. He picked a small toy, and we promised to take him back tomorrow to get a game. I would have rather had a more definitive acknowledgment of Kendall today, but it is so hard to balance that with Zach's right to enjoy his birthday and have it celebrated. I am so torn. It reminds me of the way it was when the boys were first born. Zach came home a week later, and Kendall stayed in the NICU for about a month. Every day I spent going back and fourth between my mom's, where I was staying at the time, and the hospital to try to spend time with both children. No matter where I was, I was torn by the desire to be with the other child. But as bad as it was, it wasn't as bad as now. At least then I knew there was an end in site. I knew there was a good chance that soon we'd all be together. Now, I just want to be with Kendall, and can't. It just sucks sometimes. Neil and Zach miss him too. We talked a bit, but decided to focus on making a nice day for Zachary, as that is what Kendall would have wanted and expected. As you can see above, their birthday's were always well celebrated. Their third birthday included three different celebrations. There was two for their fourth too. The first and second were celebrated along with my mom's as it is on May 10th. But still they were well represented. Now, it is all I can do to try to organize a small backyard gathering for Zach. It will be later this month. We just have a couple of things to do to get ready.
Overall we've been OK I guess. Zachary likes baseball. I have some new photos I'll add later at some point. He looks like a pro! He's been making a lot of friends, and loves to play with the other kids in the neighborhood. He was thrilled to see some of the staff from Stony Brook last week. I took him to my quilting group there (we are making memory quilts.. I'm using some of Kendall's old clothing, and photos I printed out on transfer paper... it is going to be gorgeous!). The group is being run by some of the nurses at Stony Brook on their own time, just because they wanted to do something for those who lost children. It has been so great seeing Connie, Peggy, Rosemary, Jeanie, Trish, Paulette and even Sister Lynn. Then Zach and I ran into some of them, along with nurse Debbie and Dr. Prakash at a fundraising day at Tropical Smoothie Cafe. He was so thrilled to see them, and they him.
Anyway, it's been a tiring day. I'm going to try and sleep now. I want to leave you with the link to our fundraising pages for Sunrise Day Camp. This was the wonderful camp (the only Day Camp for children with cancer), who gave Kendall such a fantastic summer, and more. I have some photos I'll post at some later time of some of the artwork they did from there. I saw their things hanging up when we went to one of their events. These wonderful people still include Zachary at their camp events, and he loves to see some of his old friends. I know he worries about some of the children he met, and wonders if they are still OK. He has a lot of great memories from the camp, and still enjoys going there, though we won't have him go for the summer camp this year. It is just a little too much for him, and he enjoys the YMCA camp now. It is good for him to transition into more normal experiences. However, he will be walking in their fundraisers, and already has raised over $150.00! (Thanks to the wonderful people in my mom's community). I have the link here for those who want to donate online. I apologize that we have not personalized the page, but I cannot seem to get into it. I wrote to the webmaster, and hope to do it soon. I'll be sending out a bunch of emails soon. I know many of our friends and family are facing tough financial times right now. I don't want or expect anyone to give money that would be a burdon to them. You can help by spreading the email around and letting others know. You can also just join us for the day! It is a fantastic walk in a beautiful setting. There is a fun celebration afterwards too. Our group is Heel to Heal. Here's the link: Aimee's Page or Zachary's Page
Read Journal History
Hospital Information: Children's Hospital of Philadelphia, and
Stonybrook Hospital
Links: http://www.themorgancenter.org A nonprofit preschool for the immune supressed.
http://www.lunchforlife.org Donate your lunch money to help fight neuroblastoma!
http://www.stbaldricks.org/locations_shavees.asp St. Baldrick's Donations
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