Mattie Miracle 15th Anniversary Video

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 28, 2008

Sunday, September 28, 2008

Sunday, September 28, 2008

I had the good fortune of sleeping at home on saturday night. Peter has taken Dr. Toretsky's prescription to a whole new level. It has been glorious to be sleeping in peace, friday, saturday, and sunday nights. At first I felt guilty, but then my practical side took over and I realized if I don't take a break, I will be unable to function well. I also bumped into one of my favorite residents yesterday, Dr. Cantor. I am very fond of Dr. Cantor because she is one of the first residents we met, and she helped us through Mattie's first round of chemo. You don't forget a person like that. Dr. Cantor is expecting a baby in three months, and we are enjoying sharing this special moment with her. Amazing how you begin to share the joys and ups and downs with the hospital staff. In anycase, I bumped into Dr. Cantor yesterday, and she told me I looked tired. When I told her I was planning on spending another night at home, she thought that was a fabulous idea, and since Mattie wasn't undergoing chemo, she seemed to think taking care of me was a necessity. As a mom, it is not easy to let go and to leave the hospital, and by doing this I really get a sense for what Peter must be feeling when he leaves to go to work during the week. Your body may not be at the hospital, but your mind and heart are!

Mattie's Absolute Neutrophil Count today was 33. Yesterday it was 35. So it has not changed much, and we need it to be at least 250 in order to be released from the hospital. So we wait. The irony is, for a little boy with a depletion of neutrophils (most common type of white blood cell, and are the first immune cells to arrive at a site of infection), he has an inordinate amount of energy. I was talking with a senior hem/onc nurse today, Kathy. I asked in her experience if most children with an ANC of 33 or below land up in the hospital with a fever (like Mattie). Her response was yes! However, she said the difference is that most children would be lethargic, tired, and not feeling well. Mattie is usually like that for one day, but then has a lot of energy thereafter. In fact, if you saw him, you most likely would think nothing is wrong with him. Mattie knows that his NY trip is coming up. He is very excited about this adventure since he has never been to NYC. However, if his counts aren't high enough, he isn't going anywhere. Peter and I haven't told him yet that perhaps we will be going without him. Monday should be an interesting day in terms of making this decision.

Today, was a very busy and fun day for Mattie. His first visitor was Ms. Mary Dressendorfer. Mary is Mattie's technology teacher at SSSAS. Mattie always loved his technology class and would come home last year, with these fabulous computer creations. Mary contacted me and told me she is willing to work with Mattie this year, and would like to bring him up to speed with the technology curriculum for the first grade. This was an amazingly generous and kind offer, since she is doing this on her own time, and refuses to be compensated for this. I had the pleasure of chatting with Mary today, and it turns out she is VERY familiar with Georgetown Hospital, since her mother was a three time cancer survivor. I continue to be in awe with how cancer survivors/patients and their families instanteously bond with each other. Mary brought an ibook with her, a type of Mac computer. What I found fascinating to watch is that Mattie knew exactly how to use the Mac (since we are a PC family) and how to use a particular program called KidPix. Mattie had a great time working with Mary, and Mary gave Peter and I the opportunity to leave the room for a while and have a change of scenery together. Before Mary left today, she let Mattie know that he could keep the ibook this week. That was very exciting news, and I am happy to report, that the computer is keeping him VERY busy. I think he likes the idea of having his own computer, and especially something familiar from SSSAS. Below you will see a picture of Mattie with Mary as well as a creation he designed on the computer using KidPix. Mattie entitled this creation, "Mattie's laboratory!"














Thanks Mary for sharing your skills and time with us today. The computer and the donut were major hits!

Mattie's second visitor today was Coach Dave. Coach Dave let Mattie know that the Saints Football team won the homecoming game. This was exciting news! Peter and I are so impressed by Dave. He truly cares about Mattie, and we are enjoying the opportunity to get to know more about him. Dave is very familiar with the Georgetown campus, since he was the university's football coach for many years, before coming to SSSAS. Dave brought a DVD of last week's Saints football game for Mattie to watch. In addition, Dave's daughter, Sarah, picked up a cute Saints panda bear for Mattie at homecoming, and it now sits proudly on his bed. Thank you for all the wonderful gifts, your love for Mattie, and your generosity of time! Below is a picture of Mattie with Coach Dave.

I also want to acknowledge Leslie Williams and Larry Jenney (Mattie's kindergarden teachers) for the wonderful DVD they created from Mattie's carwash fundraiser. We are enjoying it very much, and Mattie almost feels like he was at the event. It captures the spirit and energy of the day. Thank you so much for this precious gift. Mattie definitely enjoyed seeing the dogs and the classic car that came to the carwash. Glad you captured it Leslie!

Peter and I had the wonderful opportunity to go out to lunch together again today. Thanks Mommy and Daddy for playing with Mattie this afternoon, so that we could escape the hospital scene for several hours. These times away are so needed, and I find that Mattie enjoys his one on one time with his grandparents without us present. When Peter and I came back, Mattie had all his bugbots and windup animals (thanks John!) out on the floor doing all sorts of creative moves!

I received a lovely e-mail today from Susie Saadat. I have only met Susie once before the carwash fundraiser. Susie is a dear friend of our former neighbor, Goli. You may recall from a previous e-mail that I mentioned Goli no longer lives in DC, but moved to NYC. I know that Goli wishes she lived closer so she could do more for us. But Goli contacted her good friend, Susie when she learned about Mattie's cancer. Susie immediately went into action and has been supporting us in so many ways. Today Susie let me know that she has collected $2800 from friends, neighbors, and family in support of Mattie. I am not sure how we can ever thank Susie and Goli, but their kindness, generosity, and love for a six year old boy and his family will never be forgotten. All the money we collect for Mattie will be going to his treatment, plans for his future, and for osteosarcoma research. Not that I think we need to say this, because all of you have been so generous and are not even giving it a second thought about what Peter and I are doing with this money, but Peter and I feel better that you know, we are not using any fundraiser money to help finance our trip to NYC, or any other expenses that are not directly related to Mattie's health and future. In fact, we have asked Alison McSlarrow to help us oversee Mattie's account, and we feel a third party evaluating this fund is a very good idea.

Over the past several weeks, I have gotten to know Maria Hammann. Maria is the mom of Teresa, an osteosarcoma survivor and also a patient of Dr. Toretsky's. Maria and I have very similar outlooks and perspectives on things, and I consider myself very fortunate to have her supporting me. She e-mails often and even took Teresa up to Mattie's PICU room once to play with him. He thoroughly enjoyed her company. The ironic part is I haven't known Maria very long. But when I saw her a few weeks ago at the clinic in fear that Teresa's cancer reoccurred, I couldn't get over how this affected me. I was worried about Teresa all day and couldn't wait to hear what the tests revealed. Fortunately Teresa is fine, but the fear of what the future holds is a very real threat for cancer survivors and their families. I look at Teresa and see the picture of health. She has survived a horrible ordeal and battle, but she has come out shinning. She is the picture of hope for me, and when I thought she had a reoccurence of osteosarcoma, my heart dropped and felt heavy. Maria has helped normalize this ordeal for me on many occasions, and has even helped me put the trip to NYC in perspective, since she met with the same surgeon a while back. It is hard to know why Cancer has come into our lives, but one thing is for certain, God has helped us by introducing us to such special people like Maria.

Tonight we had a visit from Olivia Kane, a SSSAS mom. Olivia is a dear person who lights up the room when she walks in. Thank you Olivia for always reading the blog and for contacting Jim on our behalf. We thoroughly enjoyed your stew and salad, and the apple cider and cookies were a real treat. I am not an Autumn person, but I love fall foods. Tonight's dinner was very special and I look forward to designing card structures with Mattie tomorrow.
On the electronic front, thank you Kim, Emily W., Susan S., Karen, Charlotte, and Margaret for the wonderful e-cards, and Wayne H. (for your lovely prayer) and Barbsie for your e-mails. I also want to thank my cousins Maureen and Philip for the special healing gift from the League of Saint Anthony. Mattie will be remembered daily in masses and prayers of the Capuchin Community and students of Saint Lawrence Seminary. Thank you for these daily prayers and as some of you may know, people pray to Saint Anthony when seeking the return of a lost object or entrusting someone ill or in trouble to his care.
I leave you tonight with two e-mails I received today. The first one comes from my friend in Boston, Jen. Jen and I went to graduate school together at Boston College and the second e-mail comes from my lifelong friend, Karen, in NYC. Thank you Jen and Karen for your thoughts and messages of support! I share these messages with you, not only because they cheer me up and empower me through these difficult times, but I think it is meaningful to read what others write about this situation and to hear about this situation through their lens and perspective.
Jen says, "I believe your story is teaching people so many life lessons; everytime I read Mattie's blog I feel like I am receiving an education in medicine, religion, and philosophy - especially as it concerns the power of love. "

Karen sent me an e-card today which said: "Gold Star Mother’s day… Makes me proud of you…. cause you have all that it takes…. To be the chosen one…Grits, guts, and a great heart!"

1 comment:

Julia said...

I think your friend Jen perfectly described how I feel after reading your blog. Well said. Glad you have been able to have a couple nights of rest and some time alone with Pete! Hugs, Julia