Mattie Miracle Walk 2023 was a $131,249 success!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

November 20, 2008

Thursday, November 20, 2008

Thursday, November 20, 2008

Mattie had a better night of sleep on wednesday. For survival purposes though, Peter and I do tag team during the nights, because sometimes one of us is just too tired to deal with Mattie's care and needs. We seem to share that responsibility well, but none the less, even if Mattie is sleeping well, there are people walking in and out of the room throughout the night, which makes a restfull sleep almost impossible.

Mattie went to bed close to 1am, and when he woke up at 9am, he was in pain. His nurse administered him more pain medication, and then he slept until 11am. At 11, Anna, his PT, came to help Mattie out of bed. Mattie is getting better at using his own body to sit up and try to reach the edge of the bed to stand up. Mattie even seemed to put pressure on his right leg. Once in the chair, Mattie did some leg exercises with Anna. However, he wasn't up to doing his arm exercises, or in all reality I think Mattie just decided he did not want to do the exercises. While in the chair, he wasn't sure what he wanted to do. But when all else fails with Mattie, you just need to get out the legos. So I helped him create a Star Wars troop transport. It is amazing to see the left leg and the right hand working so hard together to accomplish a task yet trying to do legos with a child who has limbs bandaged is a total challenge. At one point Mattie asked why Legos doesn't build toys for children recovering from surgery? Definitely a good question. Mattie did get frustrated while building but I reminded him that these limitations were all temporary. In the midst of building, Lesley came by to say hi. But Mattie wasn't open to playing, he wanted my attention and wasn't happy until he got it. As Mattie settled down, Sally the story lady came by. Sally was dressed as a pilgrim, and was here to put us in the Thanksgiving day mood. Sally read two stories to Mattie, one was "Stone Soup," and the other was the "Old Lady who swallowed the pie." Mattie enjoyed both and he remembered the second book from preschool. Sally has a real gift for telling a story, and she captured all of our attention today.

Linda came in to spend some time with Mattie today. Mattie allowed me to leave the room only to locate a type of cheese he wanted to eat. He couldn't wait for my parents to bring him cheese, he wanted it instanteously. So I ran around Georgetown's campus trying to track down this cheese. Mattie did make it clear though that he wants me to eat lunch in his room, and not leave the room for the remaining time he is at the hospital. So I did not get a hall pass today!


Mattie and I continued building on his lego set today. What could have taken him minutes to create in the past, takes him hours now. But that is okay with me, I want him to take the time to try to assemble it himself with help. We are in no rush, after all what else do we have to do all day long? In a way, this is the one positive in all of this (and believe me I have to dig deep to look for the positive). There are no work deadlines or other outside factors putting time pressures on us. So we can enjoy playing in the moment, and not worry about jumping from one activity to another. While we were building with legos, Dr. Toretsky came to visit us. But I had a difficult time talking with him because Mattie was screaming, "mommy, mommy, mommy!" the entire time. Mattie's insistence for constant attention is growing tiresome, which is why I agree with Peter. We need a scenery change. If Bob thinks Mattie can go home friday or saturday, then we will leave the hospital. As of tomorrow, we will be in the hospital 10 days straight, and the routine, lack of privacy, and no sleep is getting to all of us.


My parents came to visit Mattie today, and Linda helped to set up a movie type environment in his room, so that he could screen a Scooby Doo movie and we could all enjoy it with him. Thank you Linda for all the extra effort you put in setting this up! Mattie loved it and after the movie we watched several youtube videos about the "lyre bird," and several muppet show clips.

We want to thank the Bentsen family today for a lovely lunch and the great X's and O's banner for Mattie's bed. It is on his foot board now. It reminds him how many people love him. We also thank the Issaccson family for a wonderful dinner and the fabulous pumpkin and chocolate treats! We are settling down for the evening, and Peter and I just changed Mattie's central line dressing. Mattie was not happy about this dressing change, because in the past he used his hands to help remove the dressing with me but now he can't help and he did not like this lack of control, but we accomplished it with a lot of screaming. Tomorrow we are preparing Mattie for a dressing change of his arm and leg bandages. Hopefully that will go smoother for Mattie. At the moment Mattie is running a low grade fever, and I called Bob about this. Bob said not to worry about it since it wasn't high enough to cause alarm. However, I really believe that Mattie's level of activity now is wiping him out and also I see a relationship between movement and the development of a fever by the end of the day. It happened wednesday night as well, but Mattie had no fever all day today, until this evening (after more activity).

On the electronic front, we want to thank Karen, Grammie, and Barbsie for the e-cards and e-mails. I am signing off because I can bearly keep my eyes open, much less write coherently. I thank all of you for your e-mails of support and for being loyal bloggers.

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