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 mom lives with since his death
A Remembrance Video of Mattie
Thank you for keeping Mattie's memory alive!
Dear Mattie Blog Readers,
It means a great deal to me that you take the time to write and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful and help support me through very challenging times. I am 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 have stopped writing on September 9, 2010. However, like my journey with grief there is so much that 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 me, and most importantly thank you for keeping Mattie's memory alive.
As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki
Tonight's picture was taken on November 18, 2008. This was 5 days after Mattie's major limb salvaging surgery. As you can see, he was still wrapped up like a mummy, but he was more alert and pain was better managed by that point. But that was only after A LOT of advocating and sometimes screaming on our behalf! Despite the pain, undergoing a significant surgery, managing life with cancer, and being isolated in a hospital room..... Mattie's spirit still came shining through!
Quote of the day: Today's coronavirus update from Johns Hopkins.
number of people diagnosed with the virus: 12,059,686
number of people who died from the virus: 255,800
What a difference a day makes. Not to mention rescue migraine medication. I was an absolute mess yesterday afternoon and evening. I couldn't function or SIT STILL. I felt miserable, as if I were going to jump out of my skin. My head was pounding, and the nausea was intense.
Peter sent me some photos on his drive to Boston to visit his parents. Of Sunny and Indie were in tow.
The glorious GW Bridge!
Sunny loves backyard time. It is like going to summer camp. As you can see Sunny was glued to the door, checking out the backyard. Next to Sunny is OC, the cat. Though it is OC's home, he tolerates Sunny. Sunny is used to cats and knows not to make any sudden or aggressive movements.
Sunny loves being outdoors! When we take Sunny to Boston, we bring a LONG leash with us. This enables Sunny to walk around and check things out without getting into trouble.
Sunny is very focused on the movement in the backyard. Chipmunks and squirrels always catch his undivided attention.
Today I went grocery shopping for Thanksgiving. My dad likes getting the turkey from Gelson's. Gelson's is a very unique and extraordinary grocery store. It has special items like what one would find at Whole Foods, yet you can also find every day brand named items in the store. So unlike with Whole Foods, you can do ALL your shopping at Gelson's. What makes Gelson's a beautiful shopping experience though are the well trained, customer focused staff members! At Gelson's the customer is always right, and they work very hard at getting their shoppers happy. I love food, and it is clear who ever manages this store, appreciates food and wants to make the store a visually pleasing experience. It doesn't disappoint.
I went to high school in California. Just down the street from Gelson's. So Gelson's is NOT new to me. I remember my maternal grandmother LOVED Gelson's and I would take her shopping there on occasion.
In reality I was dreading going shopping today because I was expecting anxious and pushy shoppers around me preparing for Thanksgiving. I found the exact opposite. I attribute this to a well run staff who keep shelves stocked, well organized and NO one waits at check out. If a line develops, more checkers appear instantly to help customers. Why aren't all grocery stores like Gelson's!???
Gelson's has it all! From an amazing butchery to a delectable bakery. Because my parent's moved into their house in June, I admit that I am not familiar with the size of their refrigerator or their oven. Both of which are smaller than their past appliances.
It was productive day and I got a lot done. It most definitely helps that my dad has a caregiver for four hours each day. It frees me up to run chores and get tasks done.
Tonight's picture was taken on November 13, 2008. It was the day after Mattie's second big limb salvaging surgery. During that 12+ hour surgery, Mattie's left arm, right leg, and left wrist were operated on. Prosthetics placed in two places and a bone graft at the wrist. What Mattie's surgeries proved to me was that the surgery was the easy part. The hard part was the aftermath! Trying to manage pain and to eventually regain strength and abilities were where the heroic feat came into play. This photo may look peaceful. But I assure you the room was anything BUT peaceful. Mattie was coping with tremendous pain, he was hooked up to IVs and had drains coming out of each operated limb. Making it thoroughly impossible to move and get comfortable.
Quote of the day: Today's coronavirus update from Johns Hopkins.
number of people diagnosed with the virus: 11,895,876
number of people who died from the virus: 254,297
I developed a HORRIBLE migraine this afternoon, so I unable to truly look at the computer screen and write much tonight. So this will be short. I got up this morning at 5:30am and ran one chore after the other, just to find a flood going on in my parent's laundry room. There just is NO break with this house. It is hard enough balancing this schedule, but it is close to impossible with a horrific migraine. I am hoping that this feeling passes in 24 hours, as I can work through headaches, but not this level of debilitating symptoms.
Tonight's picture was taken on November 12, 2008. It had to be around 5am, and we were in the pre-op area waiting for Mattie to be taken back for his second limb salvaging surgery. That was quite the day! Imagine such a little body undergoing 12 hour surgery. In any case, we were all stressed out and anxious that morning, yet we tried the best that we could to keep Mattie calm, and to reassure him we were in this together.
Quote of the day: Today's coronavirus update from Johns Hopkins.
number of people diagnosed with the virus: 11,698,661
number of people who died from the virus: 252,419
Look who has taken over my side of the bed!!! Sunny and Indie!
In case Peter is lonely, Sunny is on the job.
My dad had physical therapy today. One of the exercises Jon did with my dad, was walking with a cane up their street. If you look closer, you will notice 3 pound weighs around my dad's ankles. Jon is doing this to help my dad build up muscle. It took 10 minutes for my dad to walk up the street and 10 more minutes to walk back down. My dad had an entourage with him, as my mom, me, and Claudia (his caregiver) were behind him. We had a wheelchair in tow, just in case my dad did not have the energy to make it back.
Before I came to LA, we purchased an aeromattress for my mom. I set it up in their guest room yesterday. While I am here, I want my mom to stay in the guest room, so that she can sleep without worrying about getting up with my dad and can sleep later in the morning. I am here and can manage caregivers and other issues that arise in the morning. My mom looks more rested this morning. So I do think two weeks of getting sleep will do a world of wonders for her.
Meanwhile, I met my dad's wound care specialist today. Wound specialists are health care professionals who have been trained in the care and treatment of all types of wounds, acute and chronic. Among the most commonly treated wounds are those sustained from an acute injury, surgical wounds, diabetic wounds and pressure sores. This is the third specialist assigned to my dad. We lost his first two because of patient demand and timing did not work out for us. So we were assigned Ken (Ken is NOT his real name, I won't use his real name for the blog).
In May, my dad developed a pressure sore on the lower part of his spine. We were told by the first wound care specialist that my dad got this sore from being sedentary during COVID and being malnourished (as my dad refused to eat while in lock down at home). Though my parents have been working with Ken for a couple of weeks, it was my first introduction to him today! To cut to the chase, it was NOT a good meeting and while he was working with my dad, I picked up my cell phone and called the in-home health care agency. On the spot I fired the wound care specialist. I demanded a replacement effective immediately. He was that bad! I did not need anymore time to assess him, his personality, or his poor skills. Turns out that my mom hasn't liked working with this specialist, and she said his behavior today was typical of how his overall delivery of care.
When incensed, I write. I wrote an email to the wound care company, because I felt their management needed to hear directly from the patient's family! Below is my message, and it is my hope you can understand why Ken's treatment was not satisfactory!
MY LETTER:
My dad is a client of T. Home Care. He has been dealing with a wound on his lower spine since May. Recently, my dad was assigned to work with Ken, a wound care specialist from your company. I live out of town, so today was the first time I met Ken personally. I introduced myself to Ken and I could tell right away this was not going to be a good visit. Given our experience with Ken, not just today, but from feedback I received from my mom, I called T. Home Care and asked that Ken NOT return. I have asked for my dad to be reassigned a new specialist immediately.
Here are some of our experiences today that caused the decision to request a new wound care specialist:
When Ken arrived, I introduced myself to him, as Mauro Sardi's daughter. He did not say hello or make any effort to communicate with me.
Ken also made no effort to greet my mom, my dad's full-time caregiver. It was clear that Ken doesn't value family input and doesn't consider us part of the treatment team. Which is a BIG mistake, as family caregivers know the patient better than anyone else.
After I greeted Ken, he turned his back to me, and instead started talking to my dad's professional caregiver. Ken apparently lost a blue bag of his and wanted to know if he left it at my parent's house. Since our caregiver doesn't live in my parent's home, it would have made more sense to inquire about the bag from my mom or me.
The bigger issue arose when I started asking Ken about my dad's back wound. He wasn't forth coming with any responses.
When I saw the wound for myself (after Ken removed the bandage), I was stunned to see NO progress in healing. I last saw it in person in August, but my dad's caregivers send me photos weekly. Under Ken's care, I feel that my dad has made little to no progress. In fact, the wound looks worse. When I expressed my feelings with Ken, he basically said I was wrong and that I am not around enough to make this determination. Which is very insulting, given the efforts I do make to ensure my dad is getting the best quality of care possible.
I appreciate the opportunity to share this feedback with you and I am telling you this because I do not want other patients and families to experience with Ken what we did today. Much thanks, Victoria
Tonight's picture was taken on November 10, 2008. Mattie was in the outpatient clinic and as you can see he had worked on the computer there and was printing off images of roaches. Why? Well Mattie was into bugs of all kinds and he particularly loved seeing me freak out over the discussion or photographs of roaches. Ironically, Mattie claimed to love roaches, but he never saw one in real life. Nonetheless, whatever got Mattie excited, happy, and laughing, I supported! Also notice that on top of Mattie's hat was a model magic roach that he created! That roach is still on display in Mattie's bedroom.
Quote of the day: Today's coronavirus update from Johns Hopkins.
number of people diagnosed with the virus: 11,517,455
number of people who died from the virus: 250,426
My boy is NOT happy that I left this morning. As you can see, Sunny jumped on the bed and remained on my side for a chunk of the day. Doesn't he look depressed?
On my flight today was a couple with their new puppy, a Westie, named Sky. Sky was a good girl and managed the 5.5 hour flight!
I can't recall the last time I was on such a smooth flight! I mean no turbulence at all. It was thoroughly pleasant to sit still for this time, read a book, and prepare for my trip ahead.
My view as we were flying into Los Angeles!
We arrived an hour early! This is a typical sight in LA in the morning, overcast and grey. I left upper 30 degree weather and enjoyed sun and 70 degree temperatures in Los Angeles. Needless to say, I got up at 4am to catch my 7am flight and when I got to LA, I have been working non-stop. My dad claims to be getting stronger, but what I have concluded is we have different definitions of stronger. Stronger to me means becoming more independent. The sad part is this is not going to happen, and it is an adjustment and loss for me and my mom. In fact my dad doesn't remember living independently back in May! He thinks it was a much longer time ago.
Tuesday, November 17, 2020 -- Mattie died 581 weeks ago today.
Tonight's picture was taken in November of 2003. Mattie and I were in the kitchen dancing. Peter came in and snapped a photo of us in action. Got to love the big smile on Mattie's face! One thing was for sure about Mattie.... he loved music and movement right from the beginning.
Quote of the day: Today's coronavirus update from Johns Hopkins.
number of people diagnosed with the virus: 11,299,730
number of people who died from the virus: 248,027
Pictured here are Katie (Child Life Coordinator) and Christine (Hospital Educator). Both of these women work at MedStar Georgetown University Hospital. Mattie Miracle made a donation of candy and snack items, items which will keep our FREE snack and item carts stocked!
Behind Katie and Christine is a sight I will never forget. These buildings belong to the medical school, and many a day, I wheeled Mattie around them and the garden just to get some fresh air from the hospital unit. It seems ironic, that even a picture of this outdoor space can transport me back in time.
Even during a Pandemic, I would say that our supporters really stepped up once again to help us. In December, we will be making a delivery to Children's Hospital at Sinai in Baltimore. We have an equivalent size of items to donate.
Occasionally it is good to reflect on where the Foundation was and where it is today! A great way to do this is reading our newsletters. This is what our January 2014 Newsletter looked like! Besides content, the whole layout of the newsletter was more simplistic.
Meanwhile, our November 2020 Newsletter came out this week. This is, I believe, the fourth format we developed for our Newsletter templates. Though I complained about having to develop a new template two months ago (because the company we use migrated platforms), I think the new style is crisp, much easier to read, and definitely highlights our activities and achievements.
Tonight's picture was taken in November of 2005. That weekend we took Mattie to the National Geographic Museum. Ironically that was my first and last visit to that Museum. For no reason, other than it was a museum and adventure that reminded me of Mattie. Outside the Museum are wonderful bronze animal sculptures. As you see Mattie liked this ape! It still is one of my favorite photos. I can remember snapping this photo and trying to capture Mattie's big smile on camera.
Quote of the day: Today's coronavirus update from Johns Hopkins.
number of people diagnosed with the virus: 11,163,990
number of people who died from the virus: 246,953
It was a busy day today. With one chore or task after the other. I am leaving for Los Angeles on Wednesday, and desperately trying to get work done. Midday, I took a break, and Sunny was thrilled to walk Roosevelt Island with me. I could walk Sunny near my home in DC, but frankly, the state of the city causes me to want to LEAVE and seek a retreat. The Island provides that for me.
It was a lovely weather day and the deer were out all over the Island. I feel like I see these deer so often, that they should be used to us.
Do you see the deer in the brush? This one was walking across the water during low tide to get from one side of the Island to another. This deer caught the attention of many humans on the boardwalk today.
This duo I see often. Mom and baby! Do you see them? Mom is on the right and baby on the left!
Tonight's picture was taken in November of 2005. Mattie was three years old and that weekend we took him to Great Falls Park. Mattie loved all outdoor adventures and got me in the habit of taking long walks on the weekend. I think Mattie would have loved meeting Sunny, because they share their love for walking and the outdoors.
Quote of the day: Tonight's coronavirus update from Johns Hopkins.
number of people diagnosed with the virus: 11,000,984
number of people who died from the virus: 246,006
Yesterday we went through all the candy and snack items that were donated to the Foundation. The majority of snacks were shipped to us from our Amazon wish list and the majority of candy was dropped off at our location in Arlington, VA. For the most part all the candy we received was in its requested unopened vacuum sealed bags. We did receive some loose candy and it is being donated to shelters and other non-profits.
This stack of bins will be headed to Children's Hospital at Sinai in Baltimore, MD in December.
This stack of boxes are all the snacks going to Children's Hospital at Sinai. Our supporters were SUPER generous with snacks this year. We received all sorts of goodies: oatmeal, chips, popcorn, cookies, nuts, granola bars, k-cups of coffee!
This is the other half of the supply we received. We stuffed it into our friend's minivan. Which is filled from floor to ceiling! All of this will be delivered to MedStar Georgetown University Hospital on Tuesday! Georgetown will be receiving several bins filled with candy and the rest are boxes upon boxes of snacks!
All these donations will help stock our free snack and item carts at two hospitals. These carts serve over 1,500 families a year! The items on the carts help meet the daily needs of families who are caring around the clock for a child with cancer or other life threatening illness. When in the hospital, it is hard for parents to leave their child's bedside to meet their own basic needs. The carts serve this important psychosocial role.
Tonight's picture was taken on November 13, 2007. It was Peter's birthday and that day Mattie wanted to bake a cake with me for his dad. Like Mattie, Peter is not a chocolate fan. So naturally we made an all vanilla cake! I am so happy we did this together and that I captured these photos as reminders of our life together.
Quote of the day: Tonight's coronavirus update from Johns Hopkins.
number of people diagnosed with the virus: 10,859,661
number of people who died from the virus: 245,495
Yesterday was Peter's birthday. He worked the whole day, and I was on a marathon licensure board meeting. What Peter did not know was for two weeks I had been planning a small surprise party for him and some of his friends. The party happened to fall on his birthday, but it really was a congratulations party on becoming a president and CEO of a company.
I held the party in my friend, Ann's backyard. While Peter was working this week, I snuck out twice to buy party supplies, set up decorations, and to make floral arrangements and the list went on. Getting Peter to Ann's last night was a feat, but I managed to pull it off without him suspecting something was up. So he was truly surprised..... as this photo captures Peter as a statue! Trying to figure out what was going on around him!
We lucked out with the weather. It was clear, crisp, but not freezing. I made five floral arrangements for the party. Sticking with a fall theme and using LOTS of mums!
It may not look it but I spent about four hours hanging gold stars and decorations from the rafters of Ann's deck. I wanted the space to twinkle.
Peter with his cake! The cake was wonderful! Featuring both vanilla and coconut.
I had the food catered for the small gathering. Which was great, because at this point in lock down, I am sick of cooking.
My sunflower buffet table display! Given that I did not want people touching each others utensils, I wrapped each set with a napkin and tied it with gold ribbon.
Love the cake! It read...... Happy Birthday Mr. President. I know if I asked Peter whether he wanted a party or not, he'd say no. So I side stepped the asking and did what I wanted to do. Which was to acknowledge Peter's achievement, all that he has survived and had to deal with as a bereaved father in the workplace, and naturally to make him feel special!
Tonight's picture was taken a few days before Peter's birthday in November of 2008. Though November 13 is Peter's birthday, on November 12, 2008, Mattie underwent a 12 hour limb salvaging surgery. Therefore, Mattie wanted to celebrate Peter's birthday before his surgery. Mattie worked with his art therapists to create this colorful model magic birthday cake! This cake was treasured then as it is treasured now. It sits on the bureau in our bedroom, and it will always remind us of this moment in time. In many ways all the things Mattie created during his time in the hospital became part of his legacy.
Quote of the day: Today's coronavirus update from Johns Hopkins.
number of people diagnosed with the virus: 10,693,773
number of people who died from the virus: 243,387
Still plugging away with continuing education. Thirty minutes more to go! However, today, the session I was watching showed a TED talk, that I attached below. It is about 14 minutes long, but worth a watch. Especially if you are at all curious about the impact of social media on one's mental health!
Do you know that there is something called Facebook Addiction Disorder? Well there is and it is defined as an addictive behavior caused by an uncontrollable level of accessing and using Facebook, which negatively affects other face-to-face social activities, studies, jobs, interpersonal relationships, and physical health.
Specifically it is categorized by psychological factors such as salience, tolerance, mood modification, relapse, withdrawal, and conflict. Salience is related to the mental state of continuously thinking about Facebook, whereas tolerance is related to the tolerance level of Facebook usage (eg, increase the time spent on Facebook to reach to the same effect that was initially experienced using Facebook). Mood modification is associated with whether Facebook affects current moods of the user, and relapse is linked with failed attempts of Facebook usage reduction. Meanwhile, withdrawal and conflict are related to negative conditions and effects because of failure in accessing Facebook, in which withdrawal is associated with negative conditions such as becoming restless because of failure in accessing Facebook, whereas conflict is linked with negative effects such as Facebook causing negative impacts on individuals’ current academic or professional life.
Research has revealed that Facebook addiction have caused negative psychological effects such as emotional problems, relational problems, health-related problems, and performance problems. In terms of emotional problems, Facebook addiction has been revealed to cause negative mood alterations such as depression and anxiety, development of deficient self-regulation, as well as task avoidance and procrastination. With regard to relational problems, Facebook addicts have experienced negative relationships in terms of family conflicts, impaired concentration at work or school, and problematic peer relationships, thus contributing to interpersonal relationship detriment. With regard to health-related problems, Facebook addiction has also been associated with sleep difficulties such as insomnia and somatic problems as well as poorer sleep quality. Meanwhile, for performance problems, addiction to Facebook has caused job losses and negative effects of self-reported work performance.
In my continuing education class the instructor had us look at the "Facebook Addiction Quiz," https://psychcentral.com/quizzes/facebook-addict-quiz/. Interestingly enough many people had "yes" answers to these questions. I am intrigued by this because I truly am not wild about social media. I use it for the Foundation, but overall, have migrated away from it. Initially because I felt the majority of users couldn't relate to my issues and it is very hard to see constant "happiness" or comparisons to other peoples' lives. Nonetheless, there is a part in the TED talk below that asks school aged kids to give up ALL social media for a week. The reactions were fascinating! Sure they had a hard time, some had a slip and sent a photo or a Facebook posting, but what the kids discovered was what was noteworthy! They found that they got their LIFE back by not tuning into social media. Instead, they had the time to go outside, to SPEAK face to face with people, and ultimately were happier about their new found freedom.
Is Social Media Hurting Your Mental Health? | Bailey Parnell | TEDxRyersonU:
Tonight's picture was taken in November of 2007. Mattie was 5 years old and was in Boston visiting Peter's parents. That day, Mattie got together with his cousins and they raked a big leaf pile and then took turns on the swing jumping into the pile. Mattie was on board with piling up the leaves, but was a bit cautious about swinging and jumping into the leaves. So he did it his own way, a bit more gingerly and not much jumping. I am so glad Mattie traveled and got to experience so many fun things in his short 7 years.
Quote of the day: Tonight's coronavirus update from Johns Hopkins.
number of people diagnosed with the virus: 10,516,513
number of people who died from the virus: 242,557
I received a text message last night from my lifetime friend, Karen. She wanted to share a story about a swan on a NYC subway! Honestly that was hard to believe, until I read the story and saw the video. In a world that seems divided, angry, and at times chaotic, I enjoyed reading this story and I hope you do too! We all need more sweetness, acts of kindness, and to reflect back on our humanity.
So I introduce you to a story entitled, Sick Swan Takes City Subway Ride After Saved By Good Samaritan. The main character in the story is Bae, the swan. Who was found injured and suffering from lead poisoning. Literally a woman picked up this 17 pound bird and carried it in her arms, boarded a subway train, and took the bird to a wild bird hospital. Yes the subway was a bird ambulance in a way! Seems to me this good Samaritan and Bae the swan could be a children's story in the making! I know Mattie would have LOVED IT.
Mattie and I saved many ducklings one year trapped down a dc sewer grate. It took us hours to call the right people in Washington, DC. Animal control came and rescued each chick, while mama duck was watching us closely from afar. Needless to say, chicks and mama duck were caged and transported back to the Potomac River. A successful outcome. Just like Bae.
The story about Bae had me laughing, because the good samaritan reported that nobody paid a bit of attention to the swan on the subway. Like it was just another day in NYC. Or as she said, in "New York City you see wild things everyday!"
With heavy hearts, we 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 us, 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 my Work
An article was published on July 24, 2010, in the Washington Post's Metro section.
Many thanks to Post Reporter Rick Rojas, for covering a great story! 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.
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.
