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 in January of 2007. Mattie was five years old and as you can see he was a climber! In fact, when I was Mattie's age, I used to do the exact same thing on the staircase in our house. I used to drive my mother and grandmother crazy! Since I knew how much I loved doing this, I did not try to stop Mattie. But that said, I was always close by in case he slipped or fell. While going through my saved photos this evening, I realize I had several folders that were blank. So I went on-line to the place we used to store all of our family photos! When I got into the account, I came across many photos like this one, which I hadn't seen for years. But overall, seeing photos of us as a family practically made me sick! I had to back out of what I was looking at because I truly can't process losing Mattie and being divorced. It was like looking at the photos that belonged to a different person.
Quote of the day: A dog is the only thing that can mend a crack in your broken heart. ~ Judy Desmond
Today marks the second anniversary of Sunny's death. Two years may have marched on, but his love, presence, and companionship are felt forever. Sunny changed my life around after Mattie died. Sunny helped me get back out into the world, walk, and re-engage with the world. He was a remarkable soul, who I hope is now united with Mattie. As Mattie always wanted to have a dog!
This photo was featured on Facebook in 2016. A friend sent me this photo and a link to Sunny. Well actually Sunny's name was Lenny at the time. My friend knew I was trying to adopt a dog, but since I lived in the city, most rescue agencies did not want to work with us. I fell in LOVE with Sunny's photos and contacted the adoption center because I wanted to adopt him even without ever meeting him in person. It was a gamble, especially since I never owned a dog as an adult. The adoption process was rigorous as it entailed an interview, an inspection of our home, a letter of support from our complex's office, and we had to attend a dog behavioral training session. If you believe at love at first sight, then that was Sunny and me. The day we picked him up to adopt him, Sunny approached me first and then did not leave our sides. He was an companion until his last breath.
Look at that face! Eager to go out for a walk... rain or shine. That was the thing I quickly learned about owning a dog..... walking happens no matter the conditions outside. Sunny and I walked in the bitter cold and during intense summer heat.
Sunny and I went through training for him to get his good citizenship certification. It was a ten week course, if I remember correctly. Honestly I think the training was more for me than for Sunny. Clearly Sunny had been trained prior to me adopting him, and he knew all the commands already. I had to learn them, but the reality is that Sunny made me look good in class. As he was compliant and very motivated by the treats in my pockets. I will never forget one of the tests we had to pass for his certification.... it involved walking 10 feet away from Sunny. He had to stay where he was and not follow me. Which was a feat in and of itself. Once I was 10 feet away, I then had to face him, call him, and get him to respond to me by running to me. This exercise always freaked me out because in class, sometimes Sunny would do it and sometimes he wouldn't! But in true Sunny fashion, he rose to the occasion during testing and it was an amazing sight to see and experience. This photo was taken right after we passed certification.
Sunny was a great companion visiting Mattie's memorial tree. Sunny seemed to understand instinctively around this tree, as he never tried to mark it or dig around it. He would just sit and patiently watch and wait for me!
Sunny had to have two different knee surgeries! During one of his physical therapy sessions, his therapist dressed him up for Halloween. Kristy absolutely loved Sunny. She called him the professor, because she felt that when he looked at her with his big beautiful eyes, he was studying and examining her!
Two pals.... Sunny and Indie! The first time these two met each other in 2016.... they touched noses. Each respected the other and Indie just knew, Sunny got my full attention! This was not an unusual sight for me, as both of them would track me during the day as I was working at my desk.
Sunny loved to claim the couch!
That particular day, my neighbor asked me to babysit her pooch. Sunny was NOT happy, he was actually jealous that he was not getting my full attention. I really wasn't expecting this from Sunny, but as you can see, I was trying to explain what was happening to him and to reassure him who was number one!
In Sunny's younger days, when he could jump on top of the bed, he would grace me with his presence many a morning. He was better than an alarm clock.
Sunny was an Australian Shepherd/Australian Cattle Dog mix. So in essence he was a herding dog. Sunny tracked and chased anything that moved.... even on TV. I absolutely loved how he was transfixed on that squirrel.
I end tonight with this beautiful photo of Sunny and me. It was true love!
Tonight's picture was taken in January of 2006. Mattie was three and half years old. That afternoon he brought home all the creations you see on the coffee table. He worked on them in preschool! Mattie was very prolific both at school and in the hospital. I tried hard to save many of his things.
When we moved from our apartment into the house in 2021, I took many of Mattie's creations and made collages or placed items into shadow boxes. All of which are on display in my office. Can you see many of the items on the coffee table above, now framed on my wall? How did I know to save these things? After all, I had no idea Mattie was going to get cancer and die! Perhaps it is my sentimental nature, my attachment to people and things, or the simple notion that I knew these items marked developmental milestones for Mattie. What I do know is it NEVER crossed my mind back then that these items would become legacy pieces! It never dawned on me that Mattie would die before me.
Quote of the day: Anyway, it doesn't matter how much, how often, or how closely you keep an eye on things because you can't control it. Sometimes things and people just go. Just like that. ~ Cecelia Ahern
My dad's nurse came over this morning to assess the pressure sore on his back. This is another thing I am maintaining and managing daily! My dad has a sore that seems to heal and then weeks later it opens right back up! It is very frustrating for me. Fortunately for my dad, he can't see or feel it. Which is a blessing, because when my dad is aware of a skin issue, he scratches. His scratching is so intense that he typically causes infections.
Once the nurse's visit was done, I drove my dad to his memory care center. Before going to the center, I reviewed with my dad some of the special activities they were doing today at the center! At 3:30pm, they were scheduled to have an ice cream social. So I specifically made a point to pick up my dad up at 4pm, so he could enjoy the social. When I picked him up at 4pm, my dad not only had NO recall of anything he did all day, but he had NO recollection of the ice cream social. I have told the staff that their calendar of activities is NO HELP to me or my dad, what I need is photo documentation. This is the only way I can have a meaningful dialogue with my dad, as I can use the photos to trigger memories of the day. This lack of recall puts my dad in a very vulnerable position! Which is why when he is in the hospital, I am always on guard because he is not aware of what's happening to him and certainly can't advocate for himself.
While my dad was at the memory care center, I decided to keep this morning open in case I had to retrieve my mom's car, which has been getting serviced since Wednesday. I got all chores done yesterday like grocery shopping and picking up scripts at the pharmacy. But it turns out my mom's car won't be ready until next week. So that freed my morning up slightly. I spent two concentrated hours doing Foundation administrative work. Specifically putting together, printing out, and writing donation acknowledgment letters. Each December, Mattie Miracle runs its annual drive, which helps us raise additional funds for the operation of our programs. Within the past two weeks, I have processed over 70 letters. These 70 donors are steadfast supporters, and it is thanks to them, we have a Foundation 16 years later! When I tell them that they make the Mattie Miracles possible, I am NOT kidding.
Given the amount of work I did today, along with caregiving, by mid-day, I started to develop a terrible migraine and felt nauseous. I knew at that point, I had to remove myself from the computer and my desk, change my scenery and take a migraine rescue medication.
This was a photo of Sunny and me at Great Falls in Virginia. One of the parks Sunny absolutely LOVED. Tomorrow, January 10, marks the second anniversary of Sunny's death. I can't believe my boy has been gone for two years! He may not be physically with me, but whenever I see a dog walking with its owner, I THINK of Sunny. WHICH IS DAILY! Sunny's dog bed is still in our family room. Indie now uses it, but I can't forget the happiness and joy this special fellow brought to my life. He may have been a rescue, but he is the one who rescued me.
Tonight's picture was taken in January of 2005. Mattie was two and half years old and by that time, he LOVED bath time. Which was ironic because initially Mattie disliked the feeling of water on his skin. He went from hating it to loving it in a matter of two years. He loved it so much that I could drain the bath tub, and yet Mattie did not want to get out of it. I am not sure if Mattie liked the notion of bathing, or playing in water. My hunch is Mattie loved water play and that motivated him to bathe. I remember while filling up the tub with water, Mattie would pick out toys and throw them into the water, before he got in. Once in the water, he would create all sorts of play schemes and by the time he got out of the tub his little fingers were water logged!
Quote of the day: As long as I can I will look at this world for both of us. As long as I can I will laugh with the birds, I will sing with the flowers, I will pray to the stars, for both of us. ~ Sascha
My dad is enrolled in a Medicare program that assigns a nursing team to his care. This team calls me monthly to check in and I literally can call them 24/7 if I have questions or concerns. So far, I can't tell if this program is helpful or purely annoying as it forces me to communicate with someone who doesn't know our circumstances and situation. Yet each month, I have to bring them up to speed.
Any case, for two days, the nurse has tried calling me at 8am! When she called on Tuesday morning at 8am, I literally said to her..... YOU HAVE GOT TO BE KIDDING! I am juggling my dad and a thousand things in the morning. They never pre-arrange a call date and time. I have to fit into their agenda and Tuesday, I was not nice, I was not kind, I was annoyed. They then called me Wednesday morning, again at 8am! I did not answer the phone. I then called them back later in the morning. While talking with the nurse, she basically told me she was happy that the holidays were behind us. She did not go into much detail other than there is great pressure to create the perfect holiday, to cook/bake, and buy presents. All of which are overwhelming. I told her I understood, though our circumstances are quite different.
Last night, I got into bed, and I couldn't sleep! I do get nights like this now since my separation. Anxiety, stress, and all sorts of emotions seem more raw at night. It is when the house is quiet and I am not pulled from one task to the other, but instead, I have time to feel and think! NEVER a good thing for me. Since I couldn't sleep, I watched Hallmark movies. I no longer get upset that I can't sleep, as it serves no purpose.
The movie that caught my attention last night was titled, Single on the 25th! I am not sure this title would have even peaked my interest when I was married, but now I am intrigued by how single people manage and cope through the holidays! The movie opens up with the main character walking through the streets of Chicago. As she is walking, she is bombarded with photos and images of happy couples.... for example, she passes her local coffee house and it featured a billboard outside of a couple drinking a huge hot chocolate together. This main character then goes home and opens up her mailbox. She received countless holiday cards from friends featuring photos.... couples together, couples getting married, and couples having babies! So quickly you can see this character is overwhelmed with aloneness and it is evident that she feels different from everyone else! She then questioned.... is Christmas for couples only?
Along the way this woman meets her next door neighbor, who is a confirmed bachelor. He can see she is struggling and befriends her in hopes that he can show her that being single is wonderful and though her family wasn't able to come and visit for Christmas, she should go ahead and attend all the events and activities she had planned to do with them, but do them alone. So while she is on a quest to find herself and appreciate who she is and what she brings to the world, she is in the process helping her confirmed bachelor neighbor question what it would be like to be in love and involved with someone. In essence, they are both on a quest, and as with any good Hallmark movie, these quests intersection and as I always say.... with Hallmark there are NO UNHAPPY endings! I have enough unhappiness in real life, I don't need to absorb it on the screen too!
I think the content of this movie evoked so many feelings in me that instead of relaxing and being able to sleep, I remained up for several more hours after the movie was over. Like the main character in the movie, I too believe life is more meaningful, special, and worth living when you have someone to share it with! As Christmas 2025, the third Christmas I spent without my other half, is behind me, I wonder to myself.... will it ever get better? Will it ever get easier? I am not sure it ever will, because holidays are so much more than presents, trees, and good will. They are about shared experiences, memories, and the hope of many more of these moments together. So I face life alone and what's worse is in a way I am tortured by what I thought my life used to look and feel like, and it takes a lot of self discipline not to get fully consumed by these emotions.
Tonight's picture was taken in January of 2006! How on earth was this photo taken 20 years ago? I do not know how this is possible, especially when you think about 17 of those 20 years, Mattie was NOT even alive!!! Mattie was three and half years old in this photo. He was sitting on a rocking duck, something that survived through the generations, as Mattie's grandparents bought this duck in Holland, and their boys used it, and then their grandchildren used it! Since Mattie was the last one in the cousin line to be born, Mattie basically inherited this duck. To this day, this duck remains in my office! It is a reminder of this precious moment in time.
Quote of the day: The life of the dead is placed in the memory of the living. ~ Marcus Tullius Cicero
If you read last night's blog, then you know I was scheduled to take my mom's car in for its annual service appointment today. No my mom no longer drives, but since this car came from California, it was my mom's car to begin with, I therefore refer to it as MY MOM'S CAR! The car matches her good taste, it is a classic! Unlike my car, which is very practical and now has over 103,000 miles on it!
Dealing with my mom's car dealership sometimes takes my breath away! So much so that I have written several formal complaint letters to this dealership and the parent company! Mainly because the dealership could care less about the customer or making it easy for the customer to get a car serviced. Specifically I am referring to the fact that it is close to impossible for customer's to be given a loaner car when the car goes in for service. Service usually takes multiple days in the shop! Thankfully I own two cars, so we are never stranded, but since my separation/divorce, I have a great phobia about getting into a car with a stranger. Every time I go to this dealership, I have to take Uber to get back home or to return to pick up my car. I do it, but I am not happy about it. I have no one in my neighborhood who will help me!
I drove my dad to his memory care center today in my car! Then I went back home, and jumped into my mom's car and drove it to the dealership, which is about 30 minutes away from home. Why didn't I just take my dad to his memory care center in my mom's car? Because my mom's car is a sports car, low to the ground and very difficult for my dad to get in and out of! Since he is recovering from back pain when hospitalized, I did not want him to have a set back by tweaking his back getting in or out of the car. So it was worth my driving back home to switch cars.
When I arrived at the dealership, I met with the same representative who has helped us since 2021. However, I noticed a different feeling in the service department! Why? The dealership is under NEW management and new management has now arranged for customers to easily get a loaner car through an on-site rental company! I literally almost fell on the floor today when my representative said.... of course you can have a loaner car! That may sound like an inconsequential thing, but for me it turned my whole day around.
However, here's the funny thing! It took me ten minutes to orient myself to the loaner car! New cars are filled with technology, bells and whistles, and different ways to start the car, adjust seats and mirrors, and turning on the radio was a show! Honestly watching me in this car could have been a sitcom in and of itself! The car is so smart, that it knows the speed limit in whatever area you are driving. If you go several MPH over the speed limit the car sets off an alarm! I swear I had NO IDEA what was ringing at me, until I saw on the screen the speed limit alarm flashing! All I know is the speed limit maybe one thing, but around my area if you drive the speed limit, you will cause an accident, as everyone moves way passed the limit. So I had the alarm ringing at me constantly and I really couldn't adjust the seat appropriately! I am too small for this car, but luckily could see over the dash board!
It was a glorious weather day, close to 60 degrees, and things worked out with the car dealership! So to me, it was a good day, as I have learned to appreciate a day without a crisis. I savor these days! This afternoon, I took my mom out for tea. While I was on-line order our things, I could see a young woman sitting with two men. These men clearly had legal knowledge. They were talking loudly, so it was hard NOT to listen! They were trying to assist her. I quickly got up to speed, as she is separated from her spouse and she was talking about the chaos she is living with and the men sitting with her were trying to advise her. Mainly one of them kept saying to her.... given all that he has done, you want a divorce, right??? She wouldn't answer the question! To anyone else hearing this, I am sure the reaction would be..... What?? Get a divorce! But I understood this woman's position. When you love someone, devote your life to them, and think it is forever, it is very hard making a decision to dissolve such a union. But this is where the law and reality do not always match up. I felt for this woman today, because they were talking facts, and she was talking emotions! For this woman and all women facing a separation and divorce my heart goes out to them, as it is a huge life adjustment that permanently alters your future.
Tuesday, January 6, 2026 -- Mattie died 827 weeks ago today.
Tonight's picture was taken in January of 2006. Mattie was three and half years old and that day I brought in two homemade gingerbread houses to Mattie's preschool classroom. I wanted to do an activity with the children and Mattie's teacher asked if I would take on gingerbread houses! So I did! But keep in mind that I had NEVER made a gingerbread house from scratch in my life! So I first had to figure out how to bake gingerbread, construct houses, and make royal icing! When it came to Mattie.... I always found a way! That day, I brought in all sorts of candies and plenty of royal icing for the children. I can't tell you how much they loved this project! One student was stunned that royal icing was edible and it wasn't glue! Decorating the houses was a big hit and at the end of the event, we got to take them home! You can see Mattie with the finished product! Mattie was very happy that we came up with this creative project for his classroom, and actually the project was such a hit, that all the other preschool classrooms rotated into the room that day to also help decorate the houses!
Quote of the day: Grief is like a moving river, it's always changing. I would say in some ways it just gets worse. It's just that the more time that passes, the more you miss someone. ~ Michelle Williams
One of the zillion things that I manage now is car service and maintenance. Again, I never dealt with this throughout my married life! However, each December, I typically take my mom's car in for its annual service visit. But I had so much going on in December, especially with my dad's hospitalization, that I pushed this visit to January. Tomorrow, I am taking my mom's car in for service and I have to say that I absolutely hate this car dealership. It is a night and day experience from where I take my Ford. My Ford dealership makes service appointments super easy, as they pick up and drop the car off to my home. My mom's dealership is another story!
Given that it was in the upper 40s today, I decided to wash off both cars and vacuum them. I refuse to take them to a car wash, for multiple reasons. Since both cars need service this January, I like to send the cars in for service cleaned! At first I was just going to do my mom's car, but then decided since I was outside and had everything out there with me, I might as well manage both cars. It took me close to three hours to clean the inside and outside of both cars and then I cleaned out all the leaves and debris that blew into the garage from the last wind storm.
Once I was done with that, I came back inside to deal with laundry. I had promised I would take my parents out for frozen yogurt, so though it would have been nice to pause and regroup, I did not have the time. Even though it is cold outside, as long as it isn't snowing, I try to get my parents out of the house daily. It is good for both of them, as it gets them walking, seeing other people, and engaging with the world. For my dad this is crucial, because with Alzheimer's it is very easy for him to retreat into his own world. It takes great thought, energy, and determination to keep my dad active and absorbing things around him. If I spend much time thinking about it, his situation is quite depressing, as his mind is a complete blank to his former life and most of his current life for that matter. My dad doesn't remember any of the houses he used to live in, he has no recollection of living in California (where he lived for over 30 years!), my dad doesn't remember most of the people he used to work with, remembers nothing specific about friends, his own parents, his brother, and the list goes on. So now I am his memory and it is a daunting responsibility! When you move from your parents' child, to being the adult on duty and responsible for everyone, it is sobering.
Tonight's picture was taken in January of 2004. Mattie was a year and a half old and we were having a teachable moment. Mattie was like my shadow. If I was in one room, so we he, if I migrated to another room, he was right behind me. In this photo, Mattie wanted something that was on the counter. In the process of him trying to reach for the item, I was telling him that the stove was right next to the counter. The stove and oven were not on, but nonetheless, I wanted to teach Mattie that in the kitchen, you have to be aware of your surroundings, because some things are TOO hot to touch. The beauty of Mattie was once you explained something, it stuck! I never had to re-explain this danger again, he just naturally understood!
Quote of the day: I only miss you when I’m breathing. ~ Jason Derulo
My dad may have Alzheimer's but there are some things that remain consistent. The one constant is his love for me and my mom! My dad may have forgotten his work history, where he lived, his friends and family, but he hasn't forgotten us. I believe this is the case because he lives with us, we are constantly present. Each morning, after I get myself ready, make breakfast, and clean up the first floor, I then go back upstairs and wake my dad up so we can start his morning shower and routine. Like clockwork, my dad will say something such as....... I like your sweater, or what a beautiful blouse, or you are a beautiful lady, or I love your necklace, where did you get it!? The kindness and comments are typical for my dad, that is just who he is, and fortunately in my dad's case, dementia hasn't changed his calm and loving personality. I say this because I am very aware that it could! For this I am grateful!
It was a three ring circus this morning, because I had to wake up extra early as the fellow helping me replace the burnt out humidifier system in the house was scheduled to come over between 8 and 8:30am. In order to be able to manage any repair visit, I always like to have my dad up, showered, and dressed beforehand, so that I am not distracted and running around the house. When my dad is in the shower or bathroom, he needs constant supervision, and therefore, it is worth the effort to get up early so I can manage my dad's safety and needs.
Mid-day, my dad's memory care center sent me this photo! This is my dad with Juliet, the miniature horse that visited all the center's participants today. My understanding is that my dad really related to Juliet! This was interesting to me because my dad isn't really an animal person. He is certainly used to being around cats and dogs, as we had animals all my life, but my dad doesn't bond with animals like me. So the fact that my dad connected with Juliet today made me smile! In fact, tonight, I printed out this photo and will have it on display as a reminder of the cutie who visited the center today! I am in LOVE with horses, they are amazingly loving creatures, very sensitive to their riders, and there is nothing quite like riding a horse. It is pure freedom and the special feeling and connection of reading each other's cues in order to trot and canter are indescribable.
Tonight's picture was taken in January of 2005. Mattie was almost three years old and that day he was invited to a birthday party. Mattie's cousins were present and he enjoyed the time being part of the fun and took cues from his cousins, who were slightly older than him. Going to parties with Mattie always made me laugh, because while the other kids couldn't wait to eat the cake or cupcakes, that was Mattie's least favorite part of the event! It was quite typical for Mattie to get cake and then hand it over to me, because Mattie knew I loved all those treats! We were a great pair together, we were alike emotionally and we complemented each other well. So it is no surprise that when Mattie died, a part of me died too.
Quote of the day: You happened, and absence never felt so real. ~ Perry Poetry
I am posting a photo of me and my maternal grandmother. I am posting it for a reason.... keep reading. My grandmother's name was Anne. This photo was taken when I was in college. The beauty of the 80s.... perms and big hair! By the time I was born, my grandmother was living with my parents.
My grandmother's husband died of colon cancer when she was 55 years old. Back then health insurance was a rarity and so my grandmother had numerous medical bills to pay, a house with a mortgage, and she lived in the suburbs without a driver's license. Which was why my parents, who were newly weds themselves, moved into my grandmother's house to support her through the grieving process. Years later when I was born, I did not know any different.... I assumed all kids grew up in a multi-generational household. My grandmother was like a second mother to me and as I got older, I always heard that I changed my grandmother's life around. Meaning, she was devastated to lose her husband, but I gave her a new lease on life. Of course as a teenager, that really did not mean much to me.... NOW I get it wholeheartedly! My grandmother was a survivor.... as she lost her second child to sudden infant death and she lost her husband at a young age. All facts that were lost on me as a child, if my grandmother were alive now, I have no doubt she would have great insights for me about Mattie's death and my divorce.
So why am I talking about my grandmother? Well this weekend, I wore this sweater. I can't tell you how many people stopped to admire this sweater! The photo doesn't do it justice, because it looks handmade, the colors are beautiful, and it is pure wool. A rarity today. But where did this sweater come from?
Well, I gave my grandmother this sweater as a Christmas present when I was a teenager. While in high school, I worked over the December holidays at a store called The Limited. As you can imagine stores always looked for extra help over the holidays and though I had no working experience prior to that (other than babysitting), I was hired. I think the store figured I would do the bear minimum and I imagine they did not have high expectations for me. Every new employee was required to work all the different jobs within the store. However, that never happened for me, because the store quickly learned that I was good at sales. Why? Because I engaged customers, I got to know them, what they were looking for, who they were buying for, and literally I would put ensembles together for customers that they would sell! Some customers would just like what I was wearing that day, and asked me to find those exact items within the store. My point to this is, I did such a good job, that I got a big bonus. With the bonus money, I took it and purchased this sweater. A sweater that became a favorite of my grandmother's! When my grandmother died, I kept this sweater! So though to the average person, this looks like a nice sweater, this sweater has history, it is surrounded by hard work and meaning, and most of all it is a tribute to the love between me and my grandmother.
Each person who asked me about this sweater this weekend, heard the story I am telling you, and they were deeply touched. But perhaps this story also gives you further insight into me. I get attached to people, they become an integral part of my life, and when I lose someone (for whatever the reason) it is devastating. My grandmother has been gone 32 years, but her legacy lives on through me, as it is from her that I learned the art of cooking, cleaning, organizing, and most importantly caregiving! Anyone and everyone LOVED my grandmother. She was a sweet, kind, and loving soul, who I wish had the opportunity to get to know my Mattie. Though they did not meet each other on this earth, it is my hope that they found each other in heaven. I remember right after Mattie died, I worried.... who would be caring for him now? He needed his mom, he was only 7! That may not sound rational, but nothing about grieving is rational! Then I thought about my grandmother and I convinced myself, she would find Mattie and would look out for him in my absence. Amazing how one sweater could trigger SO MANY memories!
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.