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

September 4, 2008

Thursday, September 4, 2008

Thursday, September 4, 2008
Mattie slept through the night! However, Peter and I are so used to getting up at 4am, that we were wide awake today and couldn't go back to sleep. We are on hospital time and are learning to sleep in two hour increments. Needless to say, we were scheduled to be in the clinic today by 10:30am to get Mattie hydrated to prepare him for Methotrexate. But I was so tired and I couldn't get it together, that we arrived at the clinic over an hour late.

Mattie started his day checking his e-mail. His preschool director, Kim Messinger, sent him two e-mails. Kim has adopted a sea turtle for Mattie, and Mattie will be receiving information soon about his turtle, as well as ways to track his turtle on line. This is a wonderful way to keep Mattie stimulated, and we want to thank Kim for such a thoughtful gift. We will keep you posted about this new addition to the family. Last night, I also received an e-mail from Kathy Harris, one of Mattie's preschool teachers at RCC. Kathy is a talented and dedicated teacher, and Mattie is very fond of her. So much so, that Mattie pined for Kathy the first couple of months of kindergarten. In Kathy's e-mail to me, she mentioned that she and Kim are concerned about our level of isolation this coming year. Kathy knows that Mattie and I thrive on interacting with others. Kathy would like Mattie to serve as her junior classroom aide this year in the block room. She will welcome him whenever he is able to come to the school. RCC, to my knowledge, has never had a junior aide in the classroom. Though Mattie is no longer a student at RCC, the RCC community continues to stand behind its own, and has no trouble coming up with creative and novel ways to do this.

The first fundraiser for Mattie occurred today. Thank you Siobhan Starr and Ann Henshaw for coordinating this. The bake sale was held at the Braddock Road Youth Club Soccer Annual Uniform Exchange in Fairfax. You can see the event listing at: http://www.brycsoccer.org/. It is very heartwarming to see all the support Mattie is receiving, and in a way this support is powerful and healing medicine in and of itself.

Mattie arrived today at the Lombardi Clinic and met up with his buddies, Jenny and Jessie (our wonderful art therapists). Jenny knows that Mattie LOVES packing boxes, so she is now saving them for him. Mattie loves to create and build with boxes. Mattie was very excited to see the box Jenny got for him today, and he instantly started working on transforming the box into a "hut." Not just any hut, but a hut he can crawl into to escape from the nurses in the PICU. In addition to creating a door with a door knob, Mattie's hut also has a rug, bats living under the roof, and wall pets. You may be asking yourself what are wall pets? Well the wall pets protect the hut. If Mattie's nurses try to come into the hut, then the pets attack by spitting and vomiting (the perfect plan for any six year old boy)! You can see Mattie's hut with Mattie in it below. He has already tried the hut out on Kathy tonight (his nurse). Kathy is a good soul and played right along with Mattie.
As you can see from the picture on the left, Mattie's knees have bandaids on them. Mattie tripped and fell yesterday while running inside. It was like a surreal experience. I could see it happening, but there wasn't much I could do about it, since he was far ahead of me. For most six year-olds, such a fall and scrape would be no big deal, but with Mattie and his compromised immune system, such a scrape could be dangerous. I found myself focusing on these scrapes throughout the rest of the day, and at some point, I had to say, enough is enough. We cleaned it, I told the doctor about them, and we will just keep an eye on it if something seems to change in his condition.

Tonight, we had a visit from the Brandt family. Thank you Hilary for a lovely dinner, and for Missy and Matthew for visiting with Mattie. Mattie loves the Leapster game and books you brought him.
We had a good chat today with Dr. Toretsky, Mattie's oncologist. We told him about our desire to consult with other professionals regarding Mattie's condition. I think part of the issue I am dealing with right now, is a sense of guilt. I feel that Mattie's diagnosis and treatment plan evolved so quickly that on some level I feel as if we did not have time to understand Mattie's case and get multiple opinions about the best course of treatment. This has nothing to do with the fact that Mattie has the most able and competent doctors overseeing his treatment, but this is more a reflection of the fragile state a parent is in when dealing with all of this. We knew Mattie needed chemotherapy right away to avoid the proliferation of more tumors, but I think we both feel now that we need to be as educated as possible about surgery options and their ramifications for Mattie before proceeding forward.
It is 9:30pm now, and Kathy is starting the infusion of Methotrexate into Mattie. If you recall my description of Methotrexate, I describe it as highlighter yellow. Kathy administers it with very thick rubber gloves. Mattie took one look at this yellow stuff tonight that was coming into his IV and said to Kathy, "please stop the pee pee." We all broke out in laughter, Mattie included. I guess from a six year old perspective the Methotrexate could look like "pee pee." We have no idea what the night will exactly hold, but one thing is for certain, we are very grateful to have all of you in our lives. I received several e-mails today from friends. I can't tell you how much it meant to hear you say we are doing a great job, and how in awe you are of what Peter and I are able to accomplish. Good night and God bless you and our Mattie!

4 comments:

Unknown said...

HEY GUYS!!! =)
Sorry I couldn't stay long today. It's been a long week for me as I will be here through Saturday so I had to leave from my meeting @ Children's in DC today. I'm back nice and early tomorrow!! =) I'll be thinking of you guys tonight as the methotrexate goes to help the soldier cells work!! Mattie, see you tomorrow!!!

Anonymous said...

Grammie Says:
God bless you Mattie for the laughter you bring to all of us by using your imagination to make us see the world in a new and wonderful light! The children and teachers at RCC will have something special to look forward to when you become a Junior Aide at their school!! You'll love it and they will love you!! I hope the "pee pee" does a good job in finishing off the bad cells and that you will bounce back quickly like you did last week. Hugs & Kisses, Grammie

Anonymous said...

Good Morning Mattie, Vicki, & Pete,

I wanted to say ditto to "Grammie's" wonderful comments and send lots of quick recovery wishes to Mattie, now having to endure a 2nd round of the metho chemo treatment. I know Grammie and Grandpa (?) are arriving next week, and wish them a safe journey as they make their way across the country to be with their dear Mattie and to offer all their love and support for Vicki and Pete. The news about Mattie becoming a junior aide at RCC is a terrific idea and perfect medicine for Mattie (and Vicki too). But I have a feeling that each time they visit RCC, something special will happen for all those so deeply touched by Mattie and his family's story.

Unknown said...

I'll see you tomorrow Mattie!! Thank you for letting Jenny, Jessie and I be apart of your dinosaur digging! =) It was soo cool! I didn't stop by at the end of the day thinking you would be resting since you had gotten some medicine!! =) Can't wait to play tomorrow!! WOO HOO!