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
Tuesday, April 4, 2023 -- Mattie died 705 weeks ago today.
Tonight's picture was taken in April of 2004. This was at Mattie's second birthday party. The theme that year was trains, as Mattie was in love with all things locomotive! My parents were in town and my mom snapped this photo of us. We have very few photos of us altogether, which is why this one is special to me.
Quote of the day: We cannot think our way out of grief. We must feel our way out of grief. ~ Angie Corbett-Kuiper
Last night I debated.... do I visit Mattie's tree today on his 21st birthday or pass this year because of all I am juggling? In the end, I chose to do what I wanted to do, despite having my parents in tow.
To prepare for today's visit, I wanted to bring some ribbons and ornaments to
decorate Mattie's tree. But I had none in my Mattie box. However, while searching for ornaments in my box in the basement, look what I found??! Some of you may remember that Mattie's model magic birthday cake has been missing for some time now. I honestly have no idea where it was. Turns out Peter must have moved it when my parents moved in during December of 2021.
I think it was not happenstance that I found this cake the night before Mattie's 21st birthday. It was meant to be. Mattie designed this cake for Peter in the hospital, to celebrate Peter's birthday. It is one of Mattie's legacy items that I cherish and I was upset that it went missing.
My cut ribbons that I hot glued together at 11pm.
When we arrived at Mattie's school today, there were kids everywhere. All over the playground. It was a beautiful spring day and kids came up to Peter and asked about the tree and what we were doing. Frankly I was in no mood to entertain them or their questions.
Mattie's white swamp oak! You may see the spots of orange on the bare tree. I am happy we placed 21 awareness ribbons on it and cleaned the tree up from Christmas time.
A close up of the ribbons!
One of the ornaments I just love and leave on the tree. It says, Love you to the moon and back! One of my favorite lines I used to say to Mattie.
In the midst of all of this, my mom and I got into an argument today about my dad's physical therapist. My mom had convinced herself that the therapist was coming on Friday instead of Thursday. She even said that the therapist wrote down the dates indicating when she was coming to work with my dad. Both of these things are not true. The therapist and I keep the schedule and I had confirmed with her on Saturday that she was coming on Thursday. But my mom was so aggressive and hostile about it, I literally text messaged the therapist today to see if I was missing something. Even after confirming I was correct, my mom couldn't accept it and said the therapist was lying to me. I literally lost it and confronted my mom about her memory issues and her manufacturing of information.
After the tree visit, we took my parents out to lunch. When I returned home our next door neighbor and her children came over and delivered us a handmade card and 21 orange lilies in memory of Mattie. One of my neighbor's children is about Mattie's age and he practically visits me every afternoon when he comes home from school. Apparently he asked his mom about Mattie and it is interesting to see a six year old grappling to understand why a 7 year old could die. I haven't figured it out either, but over the years I have found a way to manage through days like today. I am sure to the average person, I may look unemotional about Mattie's loss, but how I look and how I feel are not always well lined up.
Tonight's picture was taken in April of 2003. That day we were hosting Mattie's first birthday party! It was a challenging day for Mattie, and thankfully we only had a few family members and close friends in attendance. The theme of the party was Elmo, that cute red furry Sesame Street fellow. Mattie was in LOVE with Elmo. Mattie enjoyed some moments of the party, but for the most part, he and I spent a lot of time upstairs in his bedroom, where it was quieter and calmer.
Quote of the day: A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. ~ Christopher Reeve
It is the start of a new week, and I feel absolutely exhausted. I literally dragged myself out of bed today and once I was up, I literally asked myself.... do I have the energy for another day of chores, making meals, getting my dad washed and dressed and so forth? Somehow I manage to push through that feeling, but it takes a lot of inner strength to charge forward, especially when each day is much like the one before.
This is the first year since Mattie died, that I won't be visiting his tree for his birthday tomorrow. Mattie would have been 21 years old on April 4. I personally like traditions and rituals, as it helps manage our long term grief. But with my parents in tow, I honestly don't know if I am coming or going most days. My life revolves around their every need and issue and in the process I have lost track of myself and my own needs. Typically parents are worried about their children's well being, but I think dementia strips that away completely. There is no room in one's head for anything else other than one's own issues. This makes caregiving particularly challenging and what is equally enlightening to me is that my parents do not even care for each other in any way.
Today was a three ring circus at the house. We had a repair person for the oven and another for the fireplace, and then our neighbor stopped by for help with her computer. Somehow with all of this, I couldn't focus and get anything done. Which is super frustrating for me. But then I try to step back and say..... you are just one person and there is so much I can take on at any one time. I am fed up with this daily routine and I am hoping, once the Foundation's Walk is over, that I can find a way to carve out time to walk again and find a minute for myself. Since November of 2021, I haven't had a free day to myself. It is hard on the human spirit to feel this controlled, to have no freedom, and to be working non-stop.
Tonight's picture was taken on April 4, 2002. The day Mattie was born! He was due on April 6, but my water broke on April 2, and he clearly knew there was NO time to waste. Mattie was born alert and raring to go! He wasn't a napper and wanted to take in as much of the world that was around him. As if he knew he'd only be with us for 7 years.
Quote of the day: I find, 'he says, his voice still muffled, 'that I am constantly wondering where he is. Where he has gone. It is like a wheel ceaselessly turning at the back of my mind. Whatever I am doing, wherever I am, I am thinking: Where is he, where is he? He can't have just vanished. He must be somewhere. All I have to do is find him. I look for him everywhere, in every street, in every crowd, in every audience. That's what I am doing, when I look out at them all: I try to find him, or a version of him. ~ Maggie O'Farrell
I did my usual morning routine today, and put my dad in the shower. While he was in there I was buzzing around making the bed, cleaning the toilet, and picking up trash. Out of the corner of my eye, I could see he was trying to stand up from his shower chair. There is ONLY ONE reason why my dad stands in the shower, and that is because he has to have a bowel movement. In the past, I did not move quick enough and it instead it went all over the shower, which I assure you is a huge clean up job for me. Now I keep my dad's hospital bin, which is like a bucket, inside the shower. I do this for moments just like today. As he began to stand, I told him to hand me the bin and thankfully I was able to catch everything! It still wasn't a pretty clean up job, but it so much better than having a mess all over the shower. But this is how my day started.
After breakfast and the morning routine of brain games and walking with my dad, I got him settled in his recliner and decided to go into the backyard where Peter and Sunny were. I literally had a coat on and was sitting on one of our lounge chairs. I was enjoying this moment, for less than 5 minutes, when I heard my mom screaming. I had no idea what she was yelling about, so I went inside. I came in and found our 6 1/2 year old neighbor visiting to bring us an Easter basket filled with goodies that he and his siblings made. I clearly have a fan. I appreciated the gift and the visit, but having a free moment for me is so fleeting, and I was truly enjoying being outside.
After my little friend left, I got out the dozen eggs I had boiled the other day, and set up the counter to decorate Easter eggs. My mom loves this activity. Prior to my parents moving in with us in 2021, I had NOT done Easter Eggs since Mattie got sick in 2008. Now I feel it is important to decorate so that my parents are reminded of the season and holiday that is approaching.
Peter snapped this photo of us.
Our finished products! The two orange eggs have MATTIE's name on them!
While Peter was working in the garden, check out his buddy.... sleeping on the job!
I did not see this beautiful butterfly, but Peter did and sent me this glorious photo! Apparently this is a Polygonia butterfly. They have conspicuous angular notches on the outer edges of their forewings, which is why their common name is anglewing butterflies.
Tonight's picture was taken in March of 2004. Mattie was almost two years old. For the life of me, I can't recall who gave Mattie these collapsible structures. All I remember though was Mattie loved them. That day, he took them out to our deck to play. It is amazing, this deck space wasn't that big, yet I can't tell you all the things we did on it. Which reminds me it is not the space that produces the fun and imagination, it's what is inside of us that counts. Mattie surely illustrated this!
Quote of the day: He who believes is strong; he who doubts is weak. Strong convictions precede great actions. ~ Louisa May Alcott
After my dad's physical therapist left this morning, I did some spring cleaning. Peter emptied our baker's rack in the kitchen and took all the plants we keep on it outside. He transplanted all the plants and put them in new terracotta pots! Peter bought pots in the Mattie Miracle color theme of red, orange, and yellow.
I should have taken a before photo, because every flower pot on the rack was DIFFERENT and nothing went together. I think it will look very nice now with a color theme. But every wrought iron shelf needed cleaning from plant debris and dust.
My transplanted green friends, waiting to come back inside! Some of these plants I have had for decades. Like my spider plants. In fact, when I moved into my apartment years ago in Boston, a spider plant was left behind. Over the years, I would take a piece of the plant and let it develop roots in water, and then plant it. So these are descendants of that original spider plant.
After 35 days away from a restaurant we used to visit weekly in Rockville, MD, we returned today. We have been away from the restaurant because both of my parents were ill. It took my mom about twenty days to return back to her health and then after that she did not feel up to dealing with the traffic and long commute to Maryland.
In a way, it was like a reunion today! Dawn, who is an outstanding server, surprised us with a flowering plant and a bag filled with big chocolate chip cookies for my dad. The managers gave us a big greeting, treated us to dessert, and came over to chat and check in with us throughout the meal. It was very nice to know that they missed seeing us and it made me feel special. I am very grateful to all the servers and managers who take care of us, because my parents have many special needs and requests. The servers also appreciate me and the role I play, and they realize going out to eat IS MY social life. So they don't just serve us, but we share updates with each other about our weeks, our thoughts and feelings, and over time I consider each of them to be a friend.
Tonight's picture was taken in March of 2004. Mattie was almost two years old and as you can see he and Peter were playing together on his alphabet mat. Mattie loved Peter's big umbrella and together they were imagining it was raining inside! Mattie was pointing at something, which clearly wasn't me. So I am guessing it was Patches, our calico cat, who caught his attention.
Quote of the day: Hard times don't create heroes. It is during the hard times when the 'hero' within us is revealed. ~ Bob Riley
Yes I am highlighting a rock! You maybe asking yourself.... why???!!!
Well I found this rock in front of my door, awaiting my arrival home. I knew exactly who it was from! It is from my 6 1/2 year old buddy who lives next door. He and his family recently moved in and for some reason he has taken a liking to me.
Some days I find flowers, some days I find a pile of branches (as he helps me collect all the fallen sticks and branches in the front yard), and yesterday it was this rock. If you look closely it says.... 'To Family,' with a smiley face.
I think it is so touching to receive these little gifts, that I am featuring this rock with our spring time flowers in the front hallway. I have found that some children are just born extra sensitive, maybe extra perceptive. Mattie was a bit like this, so naturally I always look for signs from Mattie and perhaps he is being channeled through this little boy next door. Mattie works in mysterious ways, so why not this way too?
I received several Foundation related emails today. One was from a charity group who wishes to partner with us. Our email communications have been going back and forth and I mentioned to her why it is more difficult for me now to take phone calls at this point in my life. I explained my caregiving role with my parents. What I wasn't expecting was a response that expressed deep appreciation, insight, and acknowledgment for the tough role I play. She was able to share her thoughts so candidly because she periodically provides care to her parents, when her sister (the primary caregiver) needs a break. I could tell immediately when reading her words that they were real and genuine, that she understood from personal experience and commented that she doesn't know how I find the time or energy for anything else! She gets a GOLD star, I don't know either but I do know that her email put me in a better mood.
Tonight's picture was taken in March of 2005. Mattie was almost three years old. As I look at this photo, I realize Peter and I were in the midst of painting the walls of our first floor. Frankly I don't even remember doing this as I thought all the painting we did occurred after Mattie died. So much for my memory. As you can see Mattie had his Easter sunglasses on and was beaming! I loved Mattie's smile and incredible energy. It is hard to believe that on April 4, Mattie would have turned 21 years old.
Quote of the day: When you go through something, you learn to appreciate the little things - the birds, trees, flowers. ~ Grizz Chapman
Recently my lifetime friend, Karen, sent me an article entitled, Whatever the Problem, It’s Probably Solved by Walking. Naturally the title alone caught my attention. Most likely because I think walking is therapeutic. I love the opening two paragraphs of the article, as the author describes walking as something all of us may take for granted. Basically we do it to get from point A to point B. We may do it to get to work, to get chores done, or to sightsee for example. But is walking just that..... a physical activity? Well the quotes below, captured in the article, highlight ALL the reasons I LOVE walking. NONE of which have anything to do with exercising per se.
Hippocrates proclaimed that “walking is man’s best medicine.” The good doctor also knew that walking provided more than mere physical benefits when he suggested: “If you are in a bad mood, go for a walk. If you are still in a bad mood, go for another walk.”
Soren Kierkegaard agreed when he confessed, “I know of no thought so burdensome that one cannot walk away from it.”
Charles Dickens was even more direct. “If I could not walk far and fast,” he wrote, “I think I should just explode and perish.”
Thomas Mann assured us, “Thoughts come clearly while one walks.”
J.K. Rowling observed that there is “nothing like a nighttime stroll to give you ideas.”
Elizabeth von Arnim concluded that walking “is the perfect way of moving if you want to see into the life of things.”
Jean-Jacques Rousseau admitted, “There is something about walking that animates and activates my ideas.”
Friedrich Nietzsche, “All truly great thoughts are conceived while walking.”
Rebecca Solnit pointed out that walking “is how the body measures itself against the earth.”
John Muir keenly observed, “I only went out for a walk and … going out, I found, was really going in.”
Henry David Thoreau wrote, “I took a walk in the woods and came out taller than the trees.”
I love to walk for every reason mentioned above. Most of the reasons are emotional, finding one's self, being connected to something bigger than one's self, and the development of new ways of thinking. It is hard to believe that such a simple activity could produce so many beneficial results. I know when I lived in the city, I did much more walking than I do in the suburbs. I was more physically active, and both Sunny and I seemed happier. We bonded over our strides together, meeting new people, and seeing our surroundings through the changing seasons.
All I know is I miss my walks. Today was a particularly frustrating day. For no exact reason than just about everything. I am tired and yet no matter how I feel, I am expected to do everything and be happy about it. My daily tasks are not glamorous, but I manage through them. However, I think because of what my life has become, some conversations tick me off. My dad keeps bringing up Peter, Peter's achievements and successes, and his talents. I agree, as I am Peter's biggest fan, but it is hard to not want to scream, as I am a person too. I have feelings and I would like to think that I have my own achievements. But to my parents, my professional side is non-existent. Instead, my role is to meet their needs. I remind myself that they aren't the same people I once knew, and for the most part I can rationalize these comments. But then there are times when I am exhausted, HUMAN, and I just want to flip out.
Tonight's picture was taken in March of 2005. Mattie was almost three years old and I snapped this photo that day because Mattie and Peter were being goofy together. They were playing with Mattie's plastic food and fruit and as you can see they were trying to scare me with their BUG impressions! Mattie LOVED bugs, most likely because he knew this would get a reaction out of me! He was always successful in that department.
Quote of the day: When things are bad, we take comfort in the thought that they could always get worse. And when they are, we find hope in the thought that things are so bad they have to get better. ~ Malcolm S. Forbes
As I write this, Peter is back home. When Peter was at Logan Airport in Boston today, this penny literally rolled down the hallway and landed right near him! I told Peter that this was indeed a Mattie sign!
When Mattie was alive, my parents introduced him to the 'penny fairy.' Literally they would drop pennies all over the place and when he found them, he would think they were magically left behind for him by the penny fairy!
The penny fairy became part of our lexicon and sure enough when Peter sent me this photo, I was transported back in time. I also felt that Mattie was sending Peter a sign that he was with him today on his flight.
It was a very busy day for me. Frankly I felt so strung out this morning, I did not know how I kept it together. From the moment my feet hit the floor in the morning, it is like a race. I need to get up to get the animals fed, I have to take a shower and get myself dressed, make breakfast, wake my dad, make their bed and clean my dad's bathroom, and then get him showered and dressed and downstairs for breakfast. Once my dad was downstairs this morning, as soon as I started to eat, he had to go to the bathroom. So I never ate breakfast. I then had to take my dad to his memory care center. I drove him, came back and herded my mom to get her coat on and into the car, so that I could take her to physical therapy.
Of course while trying to leave the house, I was also balancing laundry, dishes, and the cat vomiting all over the staircase. I was literally screaming from the stress of juggling so much. Naturally once in the car, we ran into terrible traffic. Which meant we were going to be late to therapy by at least 20 minutes. So I called the clinic to alert the therapist. Truly all day I have felt like I am on a never ending treadmill.
For this past week while Peter has been away, all I have heard from my dad is.... when is Peter coming home? My dad is very fixated on Peter, most times I deal with it, but the non-stop questioning about Peter has gotten to me. So my joke now with my dad is that.......... 'maybe I should go away for a week and leave you with Peter. Then perhaps you will have some idea for all I do each day.'
The average sane person would have a hard time balancing what I do each day for two people. I wouldn't wish it on Peter, and yet, you would think my dad would be more focused on me, the person who provides all his care. NOPE. Of course when my dad was in his right mind, he always credited Peter for the Foundation being successful. In his mind it was Peter who provided the leadership and raised the funds. I am not sure if it is a generational thing or what, but as you can imagine that feedback never sat well with me. Now even with dementia, my dad's focus remains on Peter, but you would think by now I would be used to this.
I have found with dementia, there are peaks and valleys to its trajectory. Right now we are plummeting into another valley, as I see my dad is more exhausted, can't do his 15 minute daily walk routine, seems zoned out and tracks no conversation, prefers to sleep, his appetite has decreased, and his night time routine is over the top. Last night, the nanny camera found him sitting on the toilet for an hour and thirty minutes. I can't possibly watch my dad 24 hours a day, but the camera is giving me further insight and so far it confirms that he hasn't wandered beyond the bathroom at night.
Tuesday, March 28, 2023 -- Mattie died 704 weeks ago today.
Tonight's picture was taken in March of 2005. Mattie was almost three years old and that day he was invited over to his Aunt and Uncle's home to participate in an Easter Egg Hunt. Behind Mattie is his cousin, Will. It is hard to believe that Will is graduating from college this year, and yet in my mind Mattie is forever 7.
Quote of the day: We do not have to become heroes overnight. Just a step at a time, meeting each thing that comes up, seeing it is not as dreadful as it appeared, discovering we have the strength to stare it down. ~ Eleanor Roosevelt
It was another fun day on the Farm. To add to the complexity of the day, I had a conference call at 11am. If people could see me minutes before a call, they may wonder how on earth I am pulling all of this off! Or look composed on a call! I wonder myself some days. I am so tired, it is hard to get out of bed in the morning. But I do it and I am thankful that Sunny has been compliant with eating and taking his pills while Peter has been gone. As I get up an extra 30 minutes early to manage Sunny and Indie's needs when it is just me at home.
This afternoon, I took my parents out to lunch. It is our main meal of the day. When Peter is gone, we go out every day, otherwise, we are couped up at home all day long and it helps to see other people and be out and about. Otherwise, the isolation is intense. Eating with my dad is neither pleasant at home or out in a restaurant. No matter how early I take him out, he is a zombie at the table and looks like he is going to fall asleep! Yet he wants to go out to eat. In fact, that is the first question he asks me when I wake him up in the morning..... are we going out to eat? You would think I am a horrible cook given his desire to always go out.
While at the restaurant, there was an adult daughter sitting with her parents right next to us. I couldn't help but hear her conversation. Mainly because she was shouting. She went off on a diatribe about how she doesn't believe in God, actually hates the notion of God, and faith is only a feeling and not based on science. Her parents had no response, as clearly the father was embarrassed by her screaming. Given all I have faced so far in life, I can absolutely appreciate why someone would question God, or even doubt his existence. In fact, I think God understands human frailty and our need to question and understand things we can't see and measure. Having a child diagnosed with cancer and then die, has caused me to question God, his ways, and his intentions. But being a cradle Catholic (someone who has grown up and been Catholic all one's life), I do not doubt God's existence. Cancer has not changed that reality for me.
That said, given my personal experiences with trauma and loss, when I hear comments like I heard today from this woman, my reaction was..... there is a reason she feels this way. I don't judge her in any way, as spirituality is a personal component of one's life. But sure enough, as she was getting up from the table, I could then immediately see... she is a caregiver to TWO older adults. Her dad had a physical disability and her mother literally acted just like my father. I have no idea whether she believed in God ever, but I do think caring for older adults all day long, especially those with dementia, can make you absolutely unhappy, question life, its purpose, meaning, and in the process you lose your identity and hope for the future.
Tonight's picture was taken in March of 2005. Mattie was almost three years old and that day we took him to Butler's Orchard in Maryland, to attend their Bunnyland spring fair. As you can see, Mattie was having a ball. There were all sorts of hands on activities for kids, as well as an Easter Egg hunt. Mattie gravitated to the John Deere tractor, which was why Peter created Mattie a step stool for the bathroom that looked just like the tractor.
Quote of the day: No matter how bleak or menacing a situation may appear, it does not entirely own us. It can't take away our freedom to respond, our power to take action. ~ Ryder Carroll
As you can imagine I am very cognizant about brain health and dementia. When I brought my dad in for a dental cleaning three months ago, they found that he has significant gum disease. This was surprising to me given the fact that he cared for his teeth all his life, went for cleanings every six months, and had good oral hygiene. Or at least he did before 2020. When the hygienist handed him a tooth brush and asked him to demonstrate how he brushes his teeth, it became very apparent to me and her..... that my dad no longer knows how to brush his teeth. So she has asked me to take this over. I confess, I get an F in that department, because I am doing everything else for him. But today I visited the dentist, and I am now making a commitment to take over his dental care.
The point to all of this is back at the dental visit with my dad, I learned of a salvia test to detect bacteria in your mouth that has been linked to many kinds of diseases, one being Alzheimer's. I think if my parents did not have dementia, I probably would NOT be focused on this testing, but since they do, I feel I want to be as proactive as possible. After all if there is a pathogen in my mouth, that could be treated to help with the prevention of systemic disease, then I feel it is important for me to learn more and be proactive.
Check out this interesting one minute video:
Evidence seems to show that five high-risk oral pathogens are causative drivers of inflammation and disease. Oral bacteria make their way into your bloodstream and place us at risk for heart attacks, stroke, Alzheimer’s, cancer and diabetes. Saliva pathogen testing determines the cause and severity of an infection, provides a medical diagnosis, validates treatment, and identifies early stages of infection.
The testing was super simple and I should have results in two weeks. Again, I am not saying this is the be all or end all, but it provides me with more data about my own potential situation.
It is ironic that a trip to the dentist or the doctor's office is like a SPA day for me. I dropped my dad off at the memory care center, and I asked my mom to stay home. Though she wanted to come with me (as she has a FEAR OF MISSING OUT syndrome), it is just too stressful herding her out of the house in the morning. So after I dropped my dad off, I had time by myself in the car, which felt like incredible freedom. I had freedom for three hours where I did not have to worry about either parent. My hygienist understands what I am balancing and she too calls it my 'spa' appointment.
Of course as soon as I got back home after my appointment, I had laundry, dishes, emails, the animals to care for, managing my mom, and caring for my dad. My mom got a bill in the mail today, and this sent her over the edge. She had me going crazy for 90 minutes over this bill, and I had to call the health insurer and figure out the discrepancies. While talking to the health insurer, my mom was hovering over me. I finally lost it and told her to sit down. I have no idea what the health insurer thought about my comment to my mom, but frankly I just didn't care at that point in time. Any case, after solving the bill saga, I felt like I went three rounds and LOST!
Tonight's picture was taken in March of 2006. Mattie was almost four years old. This was a typical level of activity in our dining and living rooms. Trains, tracks, toy cars, and of course Legos. Peter and Mattie both love to build and create and so Peter did not have a big learning curve when Mattie was born. Whereas, I had to learn the art of Legos, trains, cars, and of course exploring the great outdoors. However, to this day, I still prefer being outdoors versus in, and I attribute that to Mattie.
Quote of the day: Anyone can give up; it is the easiest thing in the world to do. But to hold it together when everyone would expect you to fall apart, now that is true strength. ~ Chris Bradford
This is my boy outside this morning, enjoying a sunny day on the patio! Age and cancer have changed Sunny's level of activity. But his love, spirit, and devotion remain the SAME!
Peter is in Boston, and though he had a cold and rainy day, we had close to 70 degrees and beautiful sunshine. I sent Peter a photo of his hyacinths growing beautifully!
Our pansies made it through the winter!
Signs of spring!
Here's the highlight of my day. After I got home from taking my parents to brunch, I was getting my parents inside from the garage and the front doorbell rang. I told my mom to help my dad so I could see who it was at the door.
It turns out it was our 6 1/2 year old neighbor next door. He is a very sociable fellow. He came to me soaking wet, as he had his swim suit on and had just run through his sprinklers. He handed me a daffodil and clearly wanted to chat. I brought him out a towel and Sunny and I must have stayed with him for an hour. I know at that age, kids like tasks and to do something. So I literally got my greens container out and he and I walked around the front yard picking up branches and sticks that fell off our river birch tree. While picking up sticks we talked about all sorts of things. We learned we both suffer from pollen allergies, we both have birthdays in July, and we both love Sunny. At that age, kids will talk about everything and all I kept saying to myself is..... Mattie taught me well!
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.