This is a story of a young boy who lost his life to a 14 month battle with childhood cancer, and the subsequent grief that his parents live with since his death
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 Foundationwas 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!
Tonight's picture was taken on Easter of 2004. We took Mattie to the US Botanical Gardens in Washington, DC. April is a special time at the Gardens because the azaleas are blooming! I always told Mattie these flowers came out to celebrate his birthday month! He liked hearing that! Whenever we went on a nature walk, Mattie always came home with something he found. That day, he claimed two dandelions and to me this picture shows two happy campers.
Quote of the day: Today's coronavirus update from Johns Hopkins.
Number of people diagnosed with the virus: 30,218,228
Number of people who died from the virus: 548,825
Today I got up at 4am in order to get to the airport in time for my 7am flight to Los Angeles. Both Indie and Sunny were NOT pleased with my departure.
Sunny knew immediately when I got up first that something was very wrong today. He took to our bed to stay close and keep his eyes on us.
Peter sent me this photo! Sunny gets a bit anxious when I am not around. It was a 5.5 hour flight to Los Angeles, and as soon as I got to my parent's house, I hit the ground running.
My dad needed a haircut and his nails trimmed. Both were way too long. I have showed his caregivers how to do both, and yet they don't! Which is why I can't stay away from here very long. My mom needs a break from the ridiculous pace here. So now my days once again begin at 6am starting tomorrow.
We took my dad out to lunch today. He is eating much better now and has gained back weight. Which is a great improvement from 2020, after his two hospitalizations. He truly looked emaciated back then.
After lunch, I came back to their home and did more chores. Starting with hand washing their car and vacuuming the inside. But now I feel like I overdid it, and considering I have been struggling with a migraine and cluster headache for two weeks now, I have to stop for today.
Tonight's picture was taken in April of 2002. Mattie was about five days old. We were taking him home from the hospital. For some reason, I told Peter we had to take photos! So I snapped this photo in front of the hospital sign. I remember this day as it were yesterday. Mattie was born at this hospital and his cancer was diagnosed at this hospital.
Quote of the day: Today's coronavirus update from Johns Hopkins.
Number of people diagnosed with the virus: 30,137,807
Number of people who died from the virus: 547,812
Today I learned that my friend, Margy, is losing her battle with ovarian cancer. I remember the day she was diagnosed, January 24, 2018. I know because Margy called me on my way home from zumba class. When she told me she wanted a second opinion, I told her she had to see my doctor. I literally hung up with Margy and contacted my doctor. I have my doctor's cell phone number, and not only did she answer me, but she made an appointment for Margy for January 26 in Baltimore. An appointment that I attended with her and her husband.
I met Margy through Facebook of all things in 2015. We have a mutual friend, which is how we got connected. Margy devoted her life to helping children with cancer, as she ran a successful non-profit for twenty years. Once Margy was diagnosed, she gave up her position on the non-profit and joined the board of Mattie Miracle. Margy is a big supporter of ours and has been a trustworthy, loyal, and compassionate friend. Not a person who is replaceable. I am saddened that her care has turned from curative to end of life/comfort care. Words no family wants to hear.
Of course with COVID, it made it impossible to connect live with Margy. Something we used to do prior to the Pandemic. We would have monthly get togethers, and when she was diagnosed, I would come to her house. I have missed my Margy moments this last year, as phone and zoom are not the same to me. Now unfortunately I will never have the opportunity to say goodbye to my friend in person. Makes me pause and reflect that waiting for the right time in life, never happens. You have to make the time and connections in the moment.
On Margy's birthday last year (during COVID), I sent her this video! Since her birthday is April 13, I was thinking about what to do this year. Unfortunately cancer had other plans. Click on the photo to see the video!
Tonight's picture was taken in April of 2006. Mattie was four years old. That day I took him to the Reston Petting Zoo. A place he loved to go! We posed in front of their big Easter bunny! Mattie loved the small size of this zoo, but he especially loved riding the ponies, the wagon ride through their fields to meet ostriches, and of course feeding the goats.
Quote of the day: Today's coronavirus update from Johns Hopkins.
Number of people diagnosed with the virus: 30,066,575
Number of people who died from the virus: 546,300
Today my friend Mary Ann wrote to me about Beth Parker. As she remembered quite well that Beth interviewed Mattie Miracle twice in 2012! I am deeply saddened to learn that Beth died of cancer on Monday. Another incredible person taken too soon by this horrible disease. Beth was a gifted reporter, with a compassionate heart. Each story she did on Mattie Miracle was powerful. What upsets me is we never got these interviews on a DVD or electronic file. So they are lost in the ether, unless I contact and pay for these interviews through Fox 5.
Former FOX 5 reporter Beth Parker dies from cancer:
Beth interviewed us in May and November of 2012. In May, she met us at MedStar Georgetown University Hospital and highlighted our work and our Snack and Item Cart.
This was a group photo we took together! Sitting from left to right are: Dr. Aziza Shad, and Jess Abrams (at the time the child life specialist we funded).
Standing from left to right was: Beth, me, Jey (Mattie's buddy), Nelson (Beth's cameraman), and Peter.
On November 15, 2012, Beth came to our home to cover the Candy Drive. She did a phenomenal piece for Fox 5. You should know that after Beth learned about our Candy Drive, she used to collect candy for us in her neighborhood and then would hand deliver it to us each year until she moved to California! Who does that? Beth! To me, this showed her character, love of people, and commitment to her community.
On the November 15, 2012 blog, I wrote:
I spent 90 minutes with Beth and her wonderful cameraman, Steve. I loved Steve's creativity and I truly think the candy inspired both of them. Beth and Steve greeted me today with a bag of candy that they contributed to the drive, and it is their candy that you can see me sorting in the news piece. They thought of everything! As I told Beth, talking about Mattie helps to keep his memory alive and this is VERY therapeutic. After all, if you could see how much candy we sorted, you would either think something is profoundly wrong with us or that it is a labor of love. Which it is!
I found this on the internet. Someone asked Beth this question........
You had a long tenure in journalism — 17 years. What did you love about it?
I love people. Telling people’s stories has always been compelling to me. They joke at work that I like talking to strangers. I came up doing general assignments and eventually lots of investigative reporting. I covered three presidential inaugurations, I covered 9/11 first from D.C. and then from New York for our D.C. station. I had a front-row seat to a lot of the huge current events that shaped our nation in my adult lifetime, and I feel very fortunate for that.
Toward the end of my journalism career, though, I was doing more and more feature reporting because not only was that interesting to me, but I found that people weren’t getting enough of that. These weren’t stories about famous people; they were stories about regular people and seemed to resonate so much more with viewers.
Tonight's picture was taken in March of 2003. We took Mattie to Los Angeles to visit my parents, and while there, we went to the LA Zoo. The Zoo has a children's area that enables them to feed and pet the animals. I snapped this photo of the goat encounter. I think it was priceless that Peter was trying to get the goat's attention and Mattie was busy petting it!
Quote of the day: Today's coronavirus update from Johns Hopkins.
Number of people diagnosed with the virus: 29,991,975
Number of people who died from the virus: 544,922
I would like to say my headache has improved, but I am back to where I was last evening. I started today feeling better than yesterday but after several hours staring at a computer screen, my headache takes over. I just bought a pair of blue reader glasses, so we shall see if that helps over time. But given how I am feeling, I am keeping today's message short.
Tuesday, March 23, 2021 -- Mattie died 599 weeks ago today.
Tonight's picture was taken in March of 2005. That weekend we took Mattie to Bunnyland at Butler's Orchard. It was the perfect outdoor family event each spring. As they had all sorts of fun activities, not to mention a chance to ride in a wagon full of hay. I remember these moments so well, as we took Mattie to the Orchard during pumpkin and Easter egg seasons. I am so glad we did all these things with Mattie, because if I did not they would have been lost opportunities.
Quote of the day: Today's coronavirus update from Johns Hopkins.
Number of people diagnosed with the virus: 29,918,936
Number of people who died from the virus: 543,741
I feel like I am out of commission. I have had an intense migraine for weeks and now I have cycled back to having a cluster headache. Lay people call this kind of headache a "suicide headache." I can see why, as the pain could make you go insane!
The cluster headache occurs in cyclical patterns or cluster periods, and are considered one of the most painful types of headache. A cluster headache commonly awakens you in the middle of the night with intense pain in or around one eye on one side of your head. I haven't been able to sleep well, my eyes are hard to keep open, they are bloodshot, and let's not talk about the head pain. For me, my headaches are directly linked to work and stress. Staring at a computer intensely for the last month on top of other stressors I am balancing, have caused havoc for me.
Interested in learning more about cluster headaches, go to:
Tonight's picture was taken in March of 2006. Mattie was almost four years old. This was a very unusual sight in our home. Which was why I probably took a photo of it! Mattie never napped, he did not even like doing that when he was a baby. Therefore I knew then, as I do now, Mattie was most likely getting sick and had a fever.
Quote of the day: Today's coronavirus update from Johns Hopkins.
Number of people diagnosed with the virus: 29,861,457
Number of people who died from the virus: 542,845
Today truly felt like a spring day. It was in the 60s and the sun was shining. Even our amaryllis was happy. I inherited this plant from a friend who did not want to be bothered with it. So I took it on, and it is very happy in our living room. It blooms every year!
In our commons area, we have a Mattie memorial garden. The daffodils spring up every year, and remind us that warmer weather is on its way. I call it Mattie's memorial garden because Mattie used to like to store his stones, acorns, and sticks in this spot! On every nature adventure, Mattie came home with a keepsake. He was a nature acquirer and after he died we did clean up the area and planted flowers and bushes in its place.
Years ago, someone gave me a hyacinth. When it died in our home, Peter planted the bulb in Mattie's garden. It comes back every spring and never disappoints.
I love the faces of daffodils. They seem so expressive.
We maybe in the city, but greenery is beginning to pop out all around us. Definitely one of the best seasons in Washington, DC.
Tonight's picture was taken in May of 2009. Mattie was at the "Mattie March." The March was an outdoor event his support community planned for him. I remember timing Mattie's cancer treatment around this event! That day, Mattie's preschool buddy, Zachary, stayed close to Mattie. Zachary was a great and loyal friend to Mattie throughout his cancer journey. I always say I learned a lot about friendship from watching these boys interacting over the years.
Quote of the day: Today's coronavirus update from Johns Hopkins.
Number of people diagnosed with the virus: 29,816,688
Number of people who died from the virus: 542,343
After about a month developing our Virtual Walk and Raffle Websites, they went live today! I spent the day testing them out and making purchases. All I can say is thank goodness I started this project early! To check out the Walk site, go to:
Given the nature of the new platform, I am unable to integrate the Walk and the Raffle into one website. Hopefully the company we use to host our event will have this issue corrected by next year.
Mattie Miracle Cancer Foundation
P.O. Box 6485
Arlington, VA 22206-0485
admin@mattiemiracle.com
Mattie Miracle 10th Anniversary Walk was an $119,000 success!
9th Annual Walk & Family Festival!
Mattie Miracle 8th Annual Walk & Family Festival was an $88,000 Success!!!
2016 Walk & Family Festival --- an $85,000 success
Number of Visitors Since October 12th, 2008
The Mattie Miracle Logo!!
Click on the logo to access the website
GuideStar --Candid
https://www.guidestar.org/profile/27-1238358
Mattie Passed Away
With heavy hearts, Peter and I said goodbye to our precious Mattie when he died on September 8, 2009 at 7:15am. He fought death for five hours, and he finally fell into a deep sleep. My hunch is he did not want to say good-bye to Peter and I, and it took massive amounts of drugs to ease his suffering.
Mattie in Summary
Diagnosis timetable: July 23, 2008 - tumor in the right humerus; August 1, 2008 - tumor in the left humerus; August 6, 2008 - tumors in the right femur and left radius. On August 6, Mattie was officially diagnosed with Multifocal Synchronous Osteosarcoma. Tumor Resection and Limb salvage surgeries (repiphysis): on October 20, 2008 and November 12, 2008. Percentage of Necrosis: 60% in right humerus; 80% in left humerus; 100% in left radius; 2% in right femur. Chemo began on August 8, 2008: High Dose Methotrexate, Cisplatin, Doxorubicin; Ifosfamide, and Etoposide were added to the treatment protocol on December 1, 2008; MTP-PE was added to the treatment protocol on January 12, 2009. Chest CT scans post surgery:December 5, 2008 – four 3mm lung lesions; January 8, 2009 – CT scans reveal no change in the lung lesions; March 19, 2009 - CT scans reveal slight changes in two of the lesions. With potential increases in size of up to 1-2 mm per lesion. On June 5, 2009, CT scans at 1.5mm cuts (so very refined cuts) revealed that Mattie's lung lesions doubled in size since January. The four lesions are now 8-9mm in size, indicating that Chemotherapy is not working. Median Sternotomy: June 15th, 2009, removed 9 lesions, four in the left lung and five in the right lung. We do know that two of the lesions had calcified indicating bone material was present. This confirms that the bone cancer has metastasized to the lungs and that Mattie's chemotherapy was not effective at fighting the cancer in his lungs. PET Scan: There appears to be a possible variant (i.e something abnormal) in the lower left femur, but as of now it is too small to determine what it really is. Normally, one would biopsy this, but the location is difficult as it involves the growth plate, and with lung surgery imminent, and Mattie just being off of chemo, the advice we're getting is to wait and watch, and to see what it looks like during the next scan. Echocardiogram: Mattie has a reduced LVEF (Left Ventricle Ejection Fraction), which in layman terms means that his heart is not pumping with its normal level of pressure. Although it is not at a dangerous level, the doctors do want to monitor it with a follow-up echo in a few months to determine if this is a temporary impairment or if long term damage has been done.
Washington Post Article on The Mattie Miracle Cancer Foundation!!
An article on Vicki and Pete and the Mattie Miracle Cancer Foundation ran on July 24, 2010, in the Washington Post's Metro section.
Many thanks to Post Reporter Rick Rojas, for doing a great story on us! To read the article on the Post's website, click HERE
Washington Post Article on Reach the Day and Mattie's Blog
In the July 2nd, 2009 edition of the Washington Post, our story and our blog were briefly mentioned in an article regarding CureSearch's Reach The Day event, held June 22-23, 2009 on Capitol Hill.
Click HERE for a link to read the article on the Washington Post's web site.
H.R. 2109: CHILDHOOD CANCER SURVIVORSHIP RESEACH AND QUALITY OF LIFE ACT OF 2009
A bill, sponsored by Rep. Speier has been introduced in the House on April 27, 2009, to improve and enhance research and programs on childhood cancer survivorship. For more information, please visit the link below http://www.govtrack.us/congress/bill.xpd?bill=h111-2109
This video highlights some advocacy efforts to provide more effective drugs for childhood cancer patients and access to better care for survivors. This link also provides information on how to contact your representatives to urge them to support this bill. http://www.youtube.com/watch?v=fQY8vxO_quU
Mattie's Channel 9 Story
To watch the YouTube version of Mattie's video, click Mattie's News Story
or
to Read the actual story on the 9NewsNow site, click HERE
Mattie's Situation
Mattie Had Bone Cancer Mattie had a bone cancer called Osteosarcoma. The diagnosis was: multi-focal, synchronous osteosarcoma. He had four tumors in his extremities: the upper portions of the right and left Humerus, which is the bone that connects the shoulder to the two lower arm bones (the radius and ulna), the lower (distal) left radius (right near the wrist) and the lower (distal) right femur (just above the knee joint). Although commonly found in adults, this type of bone cancer is very, very rare when found in six year old children.
Mattie started chemotherapy on Thursday, August 7, 2008, consisting of several five week cycles containing five types of drugs (Doxorubicin, Cisplatin, high dose Methotrexate, Ifosfamide and Etopicide). After the second cycle Mattie underwent a surgery (Oct. 20) to remove the tumor in his right humerus, and then a second surgery (Nov. 12) to remove the other three tumors. Mattie had three prostheses (both arms and the leg) that use the Repiphysis technology. We also tried an experimental drug called L-MTP-PE in the effort to give Mattie the best fighting chance of survival. It's a shame it wasn't enough.
All of our Family and Friends have done so many wonderful and amazing things for us to help Mattie. For that we are forever grateful. We want you all to know that we cannot thank you enough for these things and your selfless acts of kindness. We cannot adequately express how much your love, caring and devoted attention to Mattie meant to us. God Bless each and every one of you.
We made a deal from the beginning with Mattie to never lie to him about his situation, and we talked him through each step of the way. Mattie knew he had "some bad bugs" in some of his bones, and he knew that the drugs he was given were to kill the bugs, and the surgeries were meant to remove the bugs from his body. Mattie even requested from Dr. Bob Henshaw (who performed the surgery) "to let me keep a bone" once the procedures were over. Mattie did get several pictures of the procedures which he always thought were really neat.
This kind of statement only furthered our immense respect and astonishment that we had for Mattie and his emotional intellect, intelligence, and maturity. It was amazing that a six year-old could so quickly rationalize and embrace a situation and keep such a strong and positive attitude going, when his parents were a pair of emotional and physical trainwrecks. The irony is that Mattie gave us our strength to go on at a time when we should have been giving him his strength to fight.
Mattie's life during the 13 months of fighting cancer was not a normal one, even though we did whatever was humanly possible to make it as normal as possible. Fortunately, we have good friends who helped us get to the right doctors and to the program at the Lombardi Center in what everyone says was record-breaking time, who embraced us and helped us with what was unquestionably the greatest challenge of our lives. Of course, without our family and good friends, life would be a whole lot tougher than it is right now, so for those of you who are reading this, all we can say is Thank You and We Love You. God Bless.
