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 October of 2008. As you maybe able to see, Mattie's right arm was casted and in a sling (from his limb salvaging surgery). Despite having limited mobility, Mattie found creative ways to play and move his body. That day Mattie's physical therapist brought in water guns and all sorts of toys. Mattie absolutely loved it and his poor therapist got drenched with water. You may also see a McDonald's shake on Mattie's table. Mattie went through various food phases while enduring cancer treatment. That moment in time, he was all about the vanilla shake!
Quote of the day: No one ever told me that grief felt so like fear. ~ C.S. Lewis
I have no idea what happened to today. My goal was to bake cookies for three of the wonderful women who serve us Sunday brunch and then take my parents out mid-day for ice cream. I have decided that I can't handle our usual Saturday routine of going to the diner. The diner has been a royal disappointment three weeks in a row. So now I am waiting for another local restaurant to open up in November, which will replace our Saturday diner trips. While I was assembling and baking cookies, I could see my mom was sleeping at the breakfast table. So I moved her to the couch.
After I baked the cookies and was going to let them cool before frosting them, I tried to wake my mom up so that we could all go out. To my surprise, she did not want to get off the couch and go out. That is VERY UNUSUAL for my mom. So I have to keep an eye on her to figure out what is going on. I believe that part of this is psychological, as we learned a close friend of mine is relocating from our region in 2027. This is a massive blow to me, given that I am now divorced. But I think this news hit my mom hard as well, because on some level she is worried about my future. All the worrying and anxiety over this issue has wiped her out this week. As for me, it is a sad commentary, but the way I feel is that at some point, each and every person I know will abandon me. That may not sound rational, but to lose a child and a husband, for me is a devastating combination and it influences my perspective.
While the cookies were baking, I started assembling the containers. Two of the women..... I bought pumpkin lotion and a squishy pumpkin, as they love lotion and squishy toys. Literally Stephanie has a collection of over 80 squishies!
The final product... pumpkin cake cookies! These were a Mattie favorite!
Tonight's picture was taken in October of 2008. Mattie was admitted to the hospital that day and thankfully the child life playroom was having Halloween decorating. Mattie absolutely loved that playroom. Ironically when Mattie started treatment, the playroom did not exist. It was in the process of being constructed. Thank goodness, because I can't imagine 14 months in-patient without this space. Especially given that Mattie's hospital room was the size of a postage stamp! The decorated pumpkin was designed by Mattie. He designed a pumpkin head and we found some black material to create a cape for Mr. Pumpkin Head!
Quote of the day:There are moments, most unexpectedly, when something inside me tries to assure me that I don’t really mind so much, not so very much, after all. … People get over these things. Come, I shan’t do so badly. One is ashamed to listen to this voice but it seems for a little to be making out a good case. Then comes a sudden jab of red-hot memory and all this ‘commonsense’ vanishes like an ant in the mouth of a furnace. ~ CS Lewis
It was another busy day! Jumping from one task to another. I wanted to get myself to the post office to mail Foundation material to a college basketball coach in Virginia. The coach wants to feature Mattie Miracle at his up coming game on November 2. Ironically I told him November 2, is Mattie Miracle's 17th birthday. So I told him we were destined to be connected. This coach and I have been having lovely email chats and I mailed him a Foundation awareness pin and some Mattie Miracle themed gifts for his two children. I also worked on sending him stories, quotes, photos and videos this week. Needless to say, I am very happy that Mattie Miracle was chosen for this opportunity and I look forward to sharing more information as it develops.
By 1pm, I felt like I had run a marathon. But my days don't end until my parents go to sleep. I took my mom out for tea today and while out, and sitting down, I literally researched how to remove super glue from a Dyson vacuum. I guess I am not the only one who has ever glued parts of the machine together. The internet recommended using 91% rubbing alcohol. So after I picked my dad up and got my parents settled this afternoon, I set up space in the kitchen to try to fix my Dyson. Overall, since my separation, I can panic over things that are not working. My biggest fear is I won't be able to manage something, I won't be able to figure it out, and worse that I will have to spend money to correct the problem. But this morning, I said to myself.... maybe I should look at this another way! Instead of worrying that I won't be able to figure something out, I should say..... what if I can get it to work? What if I can figure it out? After all, my track record so far has been high. So I went into the glued vacuum problem with this attitude.
I did it! The problem has been solved. See the red button on the blue wand? Well it came loose, so I super glued it back in place. The only problem was I did not let it dry. I mistakenly attached the canister to the red button. Therefore, I couldn't separate the pieces and empty out the filled canister of debris.
This may not sound earth shattering, but to me it was, as I am very attached to this vacuum. I was given this vacuum by my other half when we moved into this house and I refuse to throw it out. Instead, Dyson has worked with me to practically replace every part of the vacuum over these last three years!
The items keep flowing in. This is excellent news for the Foundation's Item Carts!!! So grateful that Mattie Miracle's supporters value our work and mission.
Tonight's picture was taken in October of 2008. It was Halloween and that day we got dressed up and trick or treated at the hospital. Many of the administrative offices were handing out candy to the children and the child life team had all sorts of activities and treats for families. Mattie hand picked this costume in clinic all on his own. He loved it because the mummy bandages concealed his casted arm that was also in a sling. The costume also came with a mummy hat, hiding his bald head. Mattie had a full day at the hospital that day and then met up with his preschool buddy, Zachary, to go trick or treating. For a moment in time, Mattie had bits of normalcy.
Quote of the day: Abandonment is not just leaving someone behind; it’s leaving a piece of yourself with them, forever searching for completion. ~ Tracy A. Malone
Every morning, I use my Dyson hand held vacuum to clean up the first floor. My other half bought me this vacuum when we moved in the house because he could see me struggling to deal with pet fur, dust, and dirt each day. Remember our first floor has ivory tiles in the kitchen and hallway. It shows every piece of dirt possible! I won't part with this vacuum. Believe me! I have replaced almost every part of this vacuum over the years, thanks to the help of Dyson support.
Do you see the red button under the canister? Well my red button came loose yesterday, so I made the mistake of using super glue to position it back in place. However, what I should have done, was let the glue dry, before inserting the canister back on. Today, when I used the vacuum and I went to open up the canister to throw out the debris, I couldn't get it off! Why? Because it was glued together. HONESTLY, I thought I was going to flip out this morning. I tried everything I knew to loosen it and and to separate the pieces. Forget it! I now ordered super glue remover and I am hoping if I soak it in that, I can get it open. If not, I have ruined the entire machine. So this is how I started my day and it did not get any better from there!
It was a non-stop irritable bowel clean up day with my dad. I have used so much Clorox over the last couple of days, that I have once again burned my nasal passages and all I seem to smell is cigarette smoke. This clean up is down right exhausting. But there is something about caregiving, running a foundation, and maintaining this house that keeps me busy and constantly moving.
When I woke up this morning, there were packages by the front door. I processed them at 6:30am. Then when I got home this afternoon, there were more packages for the Foundation's item drive. Again, I processed them and broke down boxes. When I went outside to my recycling bin, I found more boxes had been delivered. It is truly amazing the generosity of our supporters. However, for me, it is a very sad commentary that I face all of this work alone. I carry Mattie's memory alone and there are days when I simply feel I am going to crack up over what has happened.
Tonight's picture was taken in October of 2008. Mattie was home between hospital admissions and that day his cousins were visiting. So we all went for a walk in Foggy Bottom, our neighborhood in Washington, DC. Notice that Mattie was holding a toy car in his right hand..... a tell tale Mattie sign. Though Mattie wasn't up for running around like his cousins, he did his best to catch up and play along. Notice the smile on his face, which always made me happy to see. When I drive into Washington, DC now and I pass these flagpoles outside this government building, I think of Mattie and this moment in time.
Quote of the day: People hunger for certainty. Even sure knowledge of death is more welcome than a continuation of doubt. ~ Pauline Boss
It was another early morning today, as my parents had dentist appointments in the city. I got up at 5:45am, but no matter how early I get up, it is never early enough. At 9:15am, my mom was still not dressed. So after showering and dressing my dad, I got him downstairs for breakfast. While he was eating, I went back upstairs and herded my mom. I blew her hair out and styled it, got her shoes on, and collected her laundry. However, neither my mom or I were able to have breakfast, despite the fact that it was sitting on the table waiting for us. I told my mom today that something has to change. I have to create a system where she sees a count down of time. Though frankly even with cues and prompts she won't pay attention. So literally I will have to personally give her reminders every thirty minutes, because the stress of this morning was over the top!
I did get to the city, which was a 40 minute drive, parked, and I used Mattie's wheelchair to get my dad into the dentist office. It is too far a walk from the car to manage my dad without a wheelchair and I had my mom hold onto one of the wheelchair handles for balance. My dad's hygienist comes in specifically for him on Wednesdays, as she normally doesn't work that day of the week. I have had two very bad dental visits with my dad and I have now refused most hygienists. But I love Alisa, she works with my dad, while my mom works with Annie (my dental hygienist). Alisa knows all about the nightmare of my life and while she is cleaning my dad's teeth (which she has to do standing up, as he can't lie flat in the chair because of his back and neck), we chat. I tell her she is better than any therapist. She is very empathetic and simply gets it. Any case, my dentist and Alisa told me that I am doing a great job with my dad and Alisa is always impressed with how clean, neat, and well dressed my dad is. As I told her, I run a tight ship!
After the dentist, I took my parents out for frozen yogurt. When I returned home, I headed straight for the computer to call my mortgage company. I have been trying to get them to do an escrow analysis for me since my mortgage assumption. When I called last week, the woman gave me the run around and wasn't helpful. Today, I wasn't going to get off the phone without answers. I lucked out, I got connected to an agent named Lynda. Lynda is a former marine. I told her I appreciated her service and I think the marines gave her a solid foundation for life. Though she did not know the answers to my questions, she worked the problem. Like any good marine. She and I were on the phone for 90 minutes. During that time, she connected me with other agents and we had a three way conversation. Lynda and Cynthia were God sends and I now have their phone numbers and extensions. Apparently you just can't get an escrow analysis without a work order, so Lynda created one today and the final analysis should come to me at the end of the month. Now why couldn't the representative I spoke to last week do this? I know the answer.... she did not want to spend the time to research and solve the problem. Needless to say, Lynda and Cynthia are examples of what is right in the world and I told them we need to clone them. They said I made their day, and together we all learned more about the escrow analysis process.
Today's item drive additions! So grateful for the incredible support of our work!
Tuesday, October 20, 2026 -- Mattie died 868 weeks ago today.
Tonight's picture was taken in October of 2008. Mattie was home between hospital admissions and that day we went out into our commons area to fly a kite. A kite that Mattie had just received from his support network of friends. Our commons space in Washington, DC was the ideal place to learn to walk, ride a bicycle and fly a kite. The wind blew just the right way in this space to make kites airborne. I miss these Mattie moments, his energy, and zest for life.
Quote of the day: It is not unusual for others to want closure more than the person experiencing the loss. ~ Pauline Boss
I had a more peaceful Monday night, compared to Sunday. I will never forget the smoke and heat detector alarms that went off or what it took to change the batteries! This morning I got up early because I knew I had to juggle my dad and a service person coming to the house to help maintain the generator. Given that our property loses power at all times of the year, I am happy my parents installed a generator in 2022. But I care for that big piece of equipment religiously.
Originally when I chose today for a service visit, the company told me that their policy is they will not give me an exact time. Instead, they would only alert me by text message 30 minutes before the tech arrives. That did not sit well with me. So last week, I text messaged Bob, my electrician. Bob works for the same company and he knows what I juggle on any given day. Any case, Bob worked his magic and Shaun came over at 10:30am. Shaun is familiar with my generator, since he helped me in the Winter of 2026, when the generator battery died, and the neighborhood was without power.
Thankfully the generator is doing well and Shaun says I have a "golden" oldie. Mind you it is only four years old. The new generators rely on technology and as such, there are issues that are arising that need to be worked out. Interesting!
While I was juggling my dad, getting him to his memory care center, dealing with Shaun, and doing Foundation work, my mom wanted to return a call to her long time friend. Her friend called this morning, while I was showering my dad. Needless to say, I couldn't pick up the phone, though he tried my home phone, cell phone, and my mom's cell phone. If he only knew what I was juggling at that hour! Any case, I got my mom situated for the call and gave her ear phones so she could hear without holding the phone. I waited until she connected with her friend and then I moved along. Ten minutes later, I went out to check on my mom and she had the ear phones in her ears but wasn't talking. I asked her what happened. She didn't know! I asked her whether her friend dropped the call or had to go and do something? Again, she didn't know! So I helped her call back. This time I was listening. Every five minutes the call got disconnected, and her friend kept calling back! Now I knew she had a strong Wi-Fi connection to make the call, so then it hit me..... my mom was holding the phone and whatever she was doing was disconnecting the call. So again, I got up from my desk and told her to leave the phone on the table and to just talk. That worked perfectly!
Naturally in conversation comes.... how is Vicki? I could hear my mom giving a very skewed update. Skewed because it sounded like I was fine, moving on, and having a great life. Seriously I wanted to know who she was talking about. I could even hear the discussion of me dating! The notion that anyone thinks I could possibly date is down right hysterical. To me that negates my long term relationship and everything that has transpired. Not only do I have no intention of dating, I am still wearing my wedding ring. This reminds me of when Mattie died. I think people wanted me to return to being "normal." Actually I don't just think that, I was ACTUALLY TOLD THIS! Friends wanted me to think toward the future! But unfortunately surviving a traumatic loss doesn't work like that, it takes time, more time, and more, more time. That said, I would love to be the Vicki that was discussed today on the phone call.... as she sounds like she is a happy and thriving!
Tonight's picture was taken in October of 2008. Mattie had returned to the hospital that day, and was admitted. We went straight to the child life playroom to participate in the Halloween activities. As you can see one of the volunteers was dressed up as Ariel, the Disney mermaid! I can't tell you how much I appreciated college students who came to the floor and tried to engage and brighten up the children's days! Together they had fun painting pumpkins and even eating cupcakes!
Quote of the day: The tension that results from conflicting emotions, especially when family members unresolved grief is not acknowledged, becomes so overwhelming that they are frozen in their tracks. They cannot make decisions, cannot act, and cannot let go. ~ Pauline Boss
It was not a good night. I have been faced with a migraine for three days so far. I think I finally fell asleep at 1am. At 4:30am, I was jolted awake by a very loud beeping sound. Given the hour, I was startled and scared. I did jump out of bed and I started to listen for the sound. At first, I thought something was wrong with the upstairs furnace (which sits in the attic space above my bedroom). I was concerned that something was wrong with the equipment and an alarm was going off. NOPE! So then I moved out into the hallway. As soon as I was in the hallway, I saw flashes of red. There were two detectors on the ceiling of the hallway beeping. I am not talking about a muted beep, I am talking LOUD. I looked into my parent's room and they were both sleeping! Oblivious to the chaos.
Given that my detectors are connected to my alarm, I had the wherewithal at that awful hour to know..... do not take the detectors off the ceiling. So I debated what do I do? At first, I thought maybe I should go back to bed and try to sleep. THAT WAS A BAD DECISION. My heart was racing with anxiety and fear, as my constant fear since my separation is..... will I be able to figure this out?
Okay, so sleeping wasn't happening, so I decided to go to my alarm's app on my phone. I was able to somehow acknowledge the detectors beeping and that stopped the sound. The first miracle! Of course by the time I got back into bed, Indie activated! So there was NO SLEEPING. Therefore today I am working on 3.5 hours of sleep. As I was getting myself ready today, I felt ill. Not physically ill, but emotionally spent because I knew I had a full day ahead!
Once I dropped my dad off at his memory care center, I came home to address the beeping as there is no way I am having another night like this again. Instead of trying to solve the problem myself, I contacted the alarm company and worked with a lovely woman. She chatted on-line with me and walked me through the process of changing out batteries in both detectors. One detector is for smoke and the other for heat! Frankly I couldn't tell the difference, as they both looked exactly the same, and both of them had low batteries. The only thing the agent did not prepare me for was the deafening sound that was going to ensue when I took the old batteries out of the detectors. Literally my ears were ringing for thirty minutes after that nightmare. But the bottom line is I did it! The only thing is that I have three more detectors in the house, so I am assuming they will all need battery replacements soon (this is the first time in five years I have had to do this!). Given that the detectors take a unique lithium battery, I ordered more today, to be prepared for the next saga.
I have five hibiscus plants inside for the winter. Plant number 2 is now blooming. To me this is the glorious part of bringing plants inside for the winter, I can see and appreciate greenery.
All my married life, we brought plants into our home for the winter. Even in our apartment. I used to call my apartment's living room window.... my room with a view! The tradition continues!
Tonight's picture was taken in October of 2008. Mattie was home recovering from his first limb salvaging surgery. As you can see, his arm was in a cast and a sling. Mattie was busy constructing a haunted house out of tinker toys and he was getting in the Halloween spirit by putting on this witch's hat. I got that hat years before this photo was taken from my next door neighbor. My neighbor wore it on Halloween and before she moved to New York, she wanted me to have the hat to wear on other Halloweens with Mattie. Unfortunately 2008, was the last Halloween we had together.
Quote of the day: Absence is a house so vast that inside you will pass through its walls and hang pictures on the air. ~ Pablo Neruda
I use this room in my house to stage donated Snack and Item Cart donations. Mattie Miracle is in the midst of our annual drive and I am so grateful to our supporters who never forget Mattie and the work that his Foundation does to support children with cancer and their families. With Halloween approaching, my goal is collect as many snacks and candy as possible to help stock our five Carts located at three different hospitals. In case, you want to participate in the Item Drive, check out our Wish List.
This morning, after I cleaned up the breakfast dishes and got my parents settled before we headed out to brunch, I went into the backyard. I spent 90 minutes out there picking up fallen limbs, branches and pulling weeds. I have noticed over the last month that all my outdoor lights located on the perimeter of the property weren't working. Given that these are solar lights, I knew it wasn't an electricity or bulb issue. So I spent some time in the bushes today, clearing out debris and making sure the light sensors were fully visible to absorb the sunlight by day! Sure enough, voila.... tonight there is light!
During spring and summer, I had my poinsettias outside. Now I brought them inside and I am determined to get them to turn red again. The only way to achieve this is to deny them light for 14 hours a day. So at nighttime, I cover them and remove the cover at 8am. We shall see if I can make this work, so that they are red and pink for Christmas. When I bought these plants last Christmas, I never thought they were going to grow and thrive. But here they are, so let's see! My other half started this tradition of putting poinsettias in our front hallway in December and daffodils and hyacinths for Easter. I am a person who gets attached to people and the traditions we create together.
Tonight's picture was taken in October of 2008. Mattie was in the outpatient clinic at the hospital and was working on his amazing haunted house. He worked on constructing a haunted house with a very elaborate interior for weeks. When I say elaborate, I mean it! He tiled the walls of the interior of a cardboard box, he had ghosts swinging around on wires, he had a staircase, cobwebs everywhere, and the list went on. It was remarkable to see how Mattie transformed a simple cardboard packing box, into this amazing structure. As you can see, Mattie even created a witch, with the help of his art therapists. This haunted house was therapeutic because while he was in the clinic, he was focused on designing and creating, and not on bloodwork, medication, and feeling ill!
Quote of the day: The loss of our relationship is often a loss of our own self. That is why such loss stretches beyond being heartbroken to being soulbroken. ~ Stephanie Sarazin
My dad had his physical therapy session this morning. It was a tough morning trying to get him together and downstairs. By the time he is downstairs and having breakfast in the morning, I have already had a full day. My dad seems to be having knee and leg pains, and the therapist and I tried to get down to the bottom of it today. What we can see is that walking is getting much more labored for my dad and unfortunately he has absolutely no insight on his abilities or lack thereof. If I were to truly absorb the decline in my parents, it would be depressing. But I do not have the time to wallow in anything for long, because if I do not function, everything in this house stops working.
Later today, I took my parents to the diner for lunch. This is the third week of a horrific experience and meal. Things were so bad today that several customers got up from their tables and left. Though I develop loyalties with people, I realize I can't keep subjecting us to bad food and dysfunction. By the time my mom and I got into the car, we were frazzled and my mom has been napping for hours since we got back home. It is very stressful when food comes out wrong, or not cooked correctly, and I have to send things back and literally oversee the process for all three of us. I have enough stress, I can't be taking on the diner's kitchen problems too. One of the managers was telling me about the two minute, two bite rule that all servers follow. Meaning, when food gets delivered, customers should be given two minutes to start eating and taking at least two bites, before the server checks back in with customers. I told her I appreciated this restaurant rule, but Vicki doesn't need two minutes. I can tell you within 30 seconds or less, whether something is cooked right and is edible. To which she laughed! Each Saturday, my mom and share an omelet. I could immediately see the eggs were over cooked and then I tasted it and I literally pulled it away from my mom. The eggs were cooked in some sort of fat, that was sickening to the taste. So the omelet went right back and I told them it was inedible. No one fought me on this, and yet I ask.... why did someone allow this dish out of the kitchen? It should never have made it to a table!
My dad created this painting this week at his memory care center. He is very impressed with his work and says he never knew he was an artist. He wanted to title the painting, Evening! However, while having dinner on Friday, we chatted and came up with a final title, Evening in Autumn.
I am so glad I transplanted my hibiscuses indoors this week when it was beautiful outside. One of the rooms in the house has all my plants for the winter. As you can see one of the plants flowered today! A glorious sight on a cold, grey, and raining day!
Tonight's picture was taken in October of 2008. Mattie was home between hospital treatments and though Mattie wasn't able to go to Fall Festivals like we did in the past, we brought pumpkins to Mattie. Mattie absolutely loved these orange orbs and he particularly loved all pumpkin themed food! This Thanksgiving, I am baking a three layer pumpkin cake with cream cheese frosting! A Mattie approved Autumn dessert!
Quote of the day: Unlike death, an ambiguous loss may never allow people to achieve the detachment that is necessary for normal closure. ~ Pauline Boss
I dropped my dad off at his memory care center today, and then went grocery shopping. It is my Friday ritual. In fact, if you speak to any trauma survivor, or someone dealing with loss and grief, you most likely will hear a similar theme! We thrive on consistency, structure, and routine. Why? Because it provides comfort and safety. Just like my grocery shopping routine, I also have a routine when I check out. I go to the self check out area, and while there, I have befriended a store employee. I do not recall what got us talking over a year ago, but what she tells me is that she is an introvert and typically doesn't chat with customers like she does with me. In any case, each Friday, we pick up where we left off the week before. Today, she started the conversation off by saying...... My mom said, XYZ, and I immediately thought of you! Why did she think of me? She thought of me, because I prepared her that XYZ was going to happen! Our conversation usually entails me listening, absorbing what she is saying, and then either reflecting back or providing commentary. She doesn't know anything about me. Does this bother me? Not in the least. In fact, for the most part this is typical of most of my connections. If I share things in a conversation, then it usually means I have a high level of trust and friendship with you. Rather funny, given that I write daily on the blog and those of you who read my words, know a lot about me. That maybe true because it is a pattern that started in a vulnerable moment, when Mattie was diagnosed with cancer. Outside of the blog, rarely do I talk about myself or expect others to listen.
While driving back from the grocery store, I saw my neighbor outside with her son's dog. This dog has anxiety and typically doesn't get along with strangers. Guess who he loves? YES, he loves me. We relate to each other. I know when I see Roger, not to approach him. I have him approach me and I follow his cues. What Roger loves however, is when I call him 'a good boy.' If a dog could smile, then Roger beams with happiness. Any case, my neighbor was over wrought. She is caring for her son who is recovering from surgery and she is worn out from caregiving and trying to clean, cook, and do laundry. She feels comfortable talking to me about this because she knows how I spend my days. I told her that I would be looking for resources for her today and would send them to her. For one brief minute, I almost offered to help her, but then I didn't. I didn't because I have to be realistic, as I am balancing the care of two people already.
I reached out to the outreach coordinator at my dad's memory care center. I happen to love Erin. Without fail, Erin provided me the names, direct cell phone and email addresses of the owners of two home health agencies. What I like about these agencies is they were started and are run by health care providers who had the personal experience of needing help with a loved one, and the system failed them.
I have had this plant stand for decades! Pre-Mattie to be specific! I remember buying it when we moved to Washington, DC at the Bombay Company. Which no longer exists. When we moved into this house, my other half bought 12 flower pots, in Mattie Miracle themed colors, to go on this stand. For quite some time, I literally had all those pots on this stand. However, now that I am divorced, slowly, one by one, each and every pot has been removed. Today, I literally removed the remaining pots, put them in the shed, and these three remain. I do not think this stand was designed for clutter. All I know the more clutter I see, the more anxious I get. So for now, I am happy that I can see shells and English house figurines.
Tonight's picture was taken on October 20, 2008. I will never ever forget that day! We were in the pre-op area awaiting to meet the surgical team for Mattie's first limb salvaging surgery. To say I was stressed, was putting it mildly, but because Mattie was clued into my every move and emotion, I kept my fears, feelings, and thoughts to myself. As it was Mattie who mattered, not me, and I was determined to do whatever was necessary to try to stabilize the disease. Since Mattie's surgery was the first case of the morning, we were up and moving from his hospital room at 4am! Yet despite everything Mattie was enduring..... he was smiling! What an amazing fellow he was!!!
Quote of the day: When our grief cannot be spoken, it falls into the shadow and re-arises in us as symptoms. ~ Francis Weller
In just two days, I went from needing heat, to air conditioning, and now back to heat in the house. Truly it is enough to make a body unstable. Last night, it was literally 85 degrees inside the house. My parents love it that hot, but it was so hot and humid, that by 9pm, I said.... I CAN'T TAKE IT! So I turned the air conditioning back on. Literally within about an hour, the humidity was out of the house, and I could feel myself becoming calmer.
This morning, my mom had a physical therapy appointment. I prepared my mom last night for the fact that she had to get up early today. Yet if I did not move the process along, she would never have made it downstairs in time by 10am. I told her that now whenever she has appointments, I will be giving her 60 minute, 30 minute, and 15 minute reminders, because otherwise it is just too stressful. I am balancing my dad in the morning, who is a full-time assist, so I truly need my mom to manage timing more effectively. That said, I am aware that in order to accomplish this, I will need to provide her with a lot more structure.
While my mom was in her session, I drove my dad to his memory care center. On the drive home, I turned on the radio. Those of you who have been reading this blog for a while, know that I am a country music fan. This love started early in life, because my dad loved country music. As a kid, he would turn it on in the car, so at a tender age, I learned about emotions, feelings, and human hurts that are so often expressed in country music. I am quite sure that this is why the music resonates with me, because it speaks to the human condition.
The song my dad and I used to get a chuckle over when I was a child was Sylvia's, Nobody. I think why my dad and I got a kick out of this song was because we both were rooting for the woman whose significant other was cheating on her! Literally we would sing right along with the lyrics! My dad and I operate under a strict moral code, we are loyal to the end, and we expect those in our lives will be this way too. Here is Nobody, in case you want to hear it:
This morning while driving back home, they played a throw back country music song from the 90s. I haven't heard this song in a long time, but certainly I remember it well. While listening to it, I felt I was meant to hear this song. John Michael Montgomery's love ballad, I Swear, is about deep devotion, lifelong commitment, and the promise of standing by a loved on through thick or thin. All I can say is for those of you out there who have such devotion in your lives, you have life's greatest gift. If you are unfamiliar with 'I Swear,' here it is:
When I got home, I moved from one task to the next. Including washing my mom's car by hand, driving it around for 15 minutes, and going to the bank. I absolutely LOVE our neighborhood bank. I know every woman in the bank and each one has helped me in numerous ways. While I was at the teller counter, there was a man at the next counter. He was making multiple deposits for a business. When he heard everyone say.... Good morning Victoria, he told me that he loved my name and that his sister is a Victoria too. Any case, both of the tellers, me, and the fellow next to me got to talking. Each of us has our own struggles and as I said to all of them.... we take it one day at a time. Which resonated with them. Then I joked with them, that several people I interact with, who are also struggling, talk about "living the dream." This made them chuckle. This is a comment that I absolutely love, and for the most part, when people use this line, they are being sarcastic. As they are not living a life that brings them love, support, and happiness. Any case, the four of us did not solve any problems today, but we definitely felt bonded over struggles! I mention this because it speaks to the human condition, we all need a listening ear and to feel understood. As I always say, the greatest words are..... YOU ARE NOT ALONE.
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.