This is a story of a young boy who lost his life to a 14 month battle with childhood cancer, and the subsequent grief that his parents live with since his death
Mattie Miracle 15th Anniversary Video
Mattie Miracle Cancer Foundation Promotional Video
Thank you for keeping Mattie's memory alive!
Dear Mattie Blog Readers,
It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.
As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter
The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!
The Mattie Miracle Cancer Foundationwas created in the honor of Mattie.
We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.
We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:
.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!
Tonight's picture was taken in November of 2003. Mattie was a year and a half old and was in the living room doing puzzles. I learned early on that Mattie loved puzzles and was good at them. He was really good at understanding three dimensions and how things went together, came apart and then went back together again.
Quote of the day: When the young bury the old, time heals the pain and the sorrow. But when the process is reversed, the sorrow remains forever. ~ Joseph P. Kennedy
I got up early this morning, so I could get all my chores done, in order to take my parent's out for my mom's 87th birthday. While I went to the farmers market, Peter and his mom called from Boston and sang.... Happy Birthday to my mom.
I consulted with my dad's doctor and as of tomorrow, my dad will be off Ritalin for good. It isn't working for him, but doing the exact opposite of its intended purpose. Given that I wasn't sure whether he could just stop Ritalin cold turkey (after taking it for over a month) today or whether he had to titrate down, I elected to titrate him down. The doctor weighed in later and told me to stop it altogether tomorrow.
Given my dad's energy level, I wasn't sure how today's special lunch would go. But I know my mom likes doing things and experiencing new places and activities... unlike my dad. So I took them to Chez Francois for a four course lunch. My mom even had a passion fruit martini!
I am quite certain that the average adult child would not be entertaining such an adventure, as it takes a lot to balance both of their needs.
My mom snapped this photo of me with my dad.
They sat us in the "rooster room," a name given to the room because of a rooster painting over the mantle of the room's fireplace. We had a lovely table by the window and my mom truly enjoyed the whole experience!
The room was decorated beautifully for the holidays! It truly felt magical.
Today's menu! My mom had:
a trio of salmon
a salad
sea bass
Grand Marnier souffle
My dad had:
bacon wrapped scallops
a salad
veal scallopini
a trio of ice cream
Lastly, I had:
a mushroom crepe
a salad
sea bass
raspberry souffle
The restaurant presents the birthday guest with homemade chocolate ice cream surrounded by their wonderful meringue. I then asked our waiter to snap a photo of us.
I just loved this Mattie Miracle themed flower arrangement in the room with us. It was simply stunning. Nothing like a room with fresh flowers.
The rooster painting usually hangs over this fireplace. But the rooms are now all decorated for Christmas. Somehow the lights and decorations made the afternoon even more festive.
Of course no meal is ever peaceful for me. Thankfully the restaurant has a family restroom on the same level as the dining room. It made it super easy to help my dad. Who naturally had to go. Unfortunately he had an accident in his pants as we did not make it to the bathroom in time. My life is filled with endless poop. I never travel without a tote bag filled with wipes, gloves, garbage bags, depends and so forth. Again, after such an episode, I am not sure the average person could go back to the table and contend with food. But I do!
I can conclude that my mom had a special day. Tomorrow I take them for high tea at the Ritz. This is what my mom really wanted to do for her birthday, but I couldn't get reservations for today (they were all booked up). So I went with plan B. Sometimes plan B is even better.
Tonight's picture was taken in November of 2003. It was around Thanksgiving time and we took Mattie to Boston to celebrate the holiday with Peter's parents. While there, we took Mattie to an indoor playground. One of the areas had miniature golf. Peter was hoping to share this love with Mattie, but as you can see Mattie had his own way of playing. He was fascinated with the balls going into the holes, and was making up his own rules on the turf.
Quote of the day: Just as it is impossible to explain childbirth to a woman who has never given birth, it is impossible to explain child loss to a person who has never lost a child. ~ Lynda Cheldlin Fell
My mom snapped this photo of me and my dad yesterday! I just downloaded it from her phone today. Not sure how I am smiling really as last night and tonight's dinner were a disaster. Not because of the food, but because my dad is extremely exhausted and is now not eating much. I have decided as of today to stop the Ritalin. As I feel he is having a paradoxical reaction, meaning an opposite reaction than what is intended. I tried contacting his doctor, but he is MIA, most likely because of Thanksgiving. So like with Mattie, I have to be the doctor of duty. As no one knows this patient better than me!
The farmer, Angela, who I bought the turkey from, sent me a message today, asking me to consider doing a FaceBook post on her and the farm. So below was my creation of thanks! We are weekly customers of Angela's and she appreciates her loyal customers by giving us discounts and she even throws in smoked pig ears for Sunny! Which he LOVES!!!!
I honestly don't know what happened today. It was like a blur. The one positive was I got out of the house and took Sunny for a walk in the woods. It was a wonderful escape and while walking, I called and spoke to Peter. It was a nice way to catch up. But it was a morning! My dad went to the bathroom and the next thing I knew, urine was all over the floor. It looked like a flood. He does this on a regular basis and I can talk to him about this every which way, but there is no retention, memory, understanding, or appreciation for the extra work this puts on me. Honestly I can't turn my back on him for a minute, because when I do, he is doing something questionable.... like putting his hands in the toilet bowl and then cleaning himself with that dirty water. DON'T get me started! It is a full time job, times TEN!!!!
Tomorrow is my mom's birthday and I am taking them to a special birthday celebration as well as high tea at the Ritz on Sunday. It all sounds lovely and I know my mom will enjoy it, but managing my dad on these outings is becoming very difficult. Case in point, before I served dinner tonight, I took him to the bathroom, in hopes that there would be no bathroom runs during dinner. Forget it! Thirty minutes into eating, he had to go to the bathroom. Not really to do anything, but he has conditioned himself that he needs the bathroom urgently while eating. I don't write about this often, but I need peace while eating. This jumping up and down to meet my parent's needs causes me issues with digestion. Two days in a row, I did not know whether dinner was going to come up or go down. There is never down time, and though I spoke to my dad about these bathroom crises, it is a lost cause. He is no longer rational or intact to process anyone else's feelings or needs. It is truly, truly a sad commentary.
Tonight's picture was taken in November of 2008. Mattie's school counselor gave him this wonderful turkey hat for the holiday. Mattie and I both loved it. Mattie put it on his head, and to me he was the cutest and most perfect turkey. He was a beautiful boy and had incredible spirit, even after two limb salvaging surgeries and coping with high dose chemotherapy, he still could smile. It's a testament to him and the power of hope and love, both of which we were committed to providing Mattie with daily.
Quote of the day: Gratitude is the inward feeling of kindness received. Thankfulness is the natural impulse to express that feeling. Thanksgiving is the following of that impulse. ~ Henry Van Dyke
I am trying to get into a routine of working on my continuing education credits after my parents retire for the night. Trust me it takes great discipline. But I had to decide.... drop the license, or maintain it? Since it took years in the making to get it (pass a national test, and complete 4,000 hours of supervised clinical work), I decided.... no I worked too hard for this to let my license lapse.
I am working through a two day webinar on grief. The speaker laughs like a hyaena. Putting that aside, I am getting educated on the various theoretical frameworks on grief. The most recent framework and most used today comes out of Holland. It is the Stroebe & Schut model. A crucial part of this Dual Process Model is the concept of oscillation. According to Stroebe and Schut, healthy grieving means engaging in a dynamic process of oscillating between loss-oriented and restoration-oriented coping. A griever will oscillate between confronting the loss and avoiding the loss.
Two things caught my attention here about this model. I have described my feelings on Mattie's blog regarding how I have and continue to cope with his death. In fact, I share it with anyone who has lost a loved one. I cope by having distractions or diversions. This is my terminology, but according to this dual process model, I am describing "restoration oriented coping." I am proof that this model is spot on, as one can't possibly sit in grief 24/7. However, as this model points out, distractions (restoration oriented) are also a form of loss, a secondary loss. Because as we re-invest ourselves in these diversions, we are forming new roles and identity. Naturally we are doing these activities because of the death of a loved one.
The other aspect of this model is the simple fact that the inner circles (dealing actively with loss and having diversions) oscillate between each other. Meaning, in any given day, both are going on. One hour you might be dealing with the loss, and in the next, we are going about our daily routine and interacting with the world. However, as anyone who has lost a loved one knows, while interacting with the world, things can trigger us, and set us right back into the loss-oriented portion of the model. What I do love about this webinar, is it is very clear that there is NO timeline to loss. Instead, it is a lifetime experience and as such this model of loss and diversions applies throughout one's life journey.
As you can surmise, I signed up for this training because it is something that personally interests me and also it helps as I guide other families dealing with the impossible of child loss. Typically I find models limiting, but this one resonates with me, which is why I am writing about it here.
This morning, I decided to set up the dining room table for Thanksgiving. Though it is just the three of us, I want it to be special and different. When we think of holidays, we tend to think of having multiple people over. Do I feel depressed that this isn't happening? Yes and no.
As this grief webinar points out, during times of trauma, we shut down and close people out. Though what I am coping with now is different from Mattie's diagnosis and death, there are other aspects that do make it traumatic. Just like with Mattie's death, I now limit my exposure to the outside world. Not saying it is the best solution, but it is how I can cope with the chaos I am enduring.
Personally I have a love/hate relationship with the Macy's Thanksgiving Day Parade. I recall Thanksgiving 2008, when Mattie was home from the hospital, recovering from his limb salvaging surgeries. This was prior to starting medication for anxiety and depression, and before his doctors acknowledged that Mattie was coping with medical traumatic stress. Mattie was a handful to manage at home and I felt like I was dealing with someone who came back from a war. It was impossible to make him happy and any sound or hearing talking made him extremely agitated and unhappy. We tried watching the Macy's Parade together, but that did not go well. So now when I think of Thanksgiving and the Parade, I am transported right back in time, to Thanksgiving 2008.
I did turn on the Macy's Parade today for my parents to watch. As I wanted to acknowledge the holiday and to me this is the most festive way to do it. We did not see the whole parade, but a portion of it. It was done in New York style, big, bold, and impressive. I absolutely love all the student bands from around the country and to see the creativity of the floats. My two favorites were below....
The Lion King!
Mariah Carey (who was the act right before Santa!)
I think I have finally figured out how to use our oven. The repair man says the oven needs an hour to come to temperature. Wrong! Try four. After four hours, the oven was at and remained at the temperature I wanted. With previous turkey roasts, we were juggling and adjusting the temperature of the oven, because it never held its heat. Today, no problem. We bought this turkey at the farmer's market. It was the best turkey I ever ate and carving it was super easy. Normally I am playing tug of war with wings and legs. No problem today.
My mom was excited about the meal and wanted a photo with the turkey.
My mom photographed me carving the turkey.
Our table was ready to go!
I really tried to make it a lovely meal for my parents. But my dad was not himself. He did not eat much and was exhausted all day. To me the Ritalin is having the exact opposite effect of what is intended. It was a very frustrating meal, as I was jumping up and down constantly to meet his needs, including bathroom runs. I finally gave up. All of this is a lot of work and my dad has no insight at all as to how much this takes.
I tried to take a photo of the three of us.
It was such a wonderful turkey, I decided to make turkey broth from it. Just in case you were wondering, Sunny had a good helping of turkey tonight. It was definitely Thanksgiving for him.
In memory of Mattie, I am posting an excerpt from the November 27, 2008 blog:
Peter tells me Mattie had an awful night of sleep on Wednesday. Mattie was up on the hour waking up with terrible dreams. I remember these times from the first surgery. This is how Mattie's body deals with the pain medication and perhaps the whole horrible ordeal. I have decided to take over night duty tonight. Peter needs and deserves a major break. When Mattie woke up this morning, we turned on the TV and watched the Macy's Thanksgiving Day parade. In the past, Peter and I were normally so busy that we never watched the parade. But today, we all stayed in one place and enjoyed the floats and marching bands. I brought out many of the dishes I was preparing for the day, out to the living room, and set up prep areas there, so that Mattie could see that I was with him and could take part in the cooking process. He was VERY demanding all day, he wanted Peter and I near him at all times. It was thoroughly exhausting, and it made it very difficult to cook and be in the kitchen. We did enjoy the parade, and our favorite float was with Kermit the Frog, featuring a song, "I Believe!" Seemed very inspiring and meaningful for the season and for us personally.
I tried to make today festive and got out my favorite turkey plates to inspire Mattie to come and eat at the table. I attached a picture of our table. However, it wasn't the Thanksgiving we were hoping for. Mattie refused to come to the table, wouldn't eat any of the food, and was in a grumpy mood. Mattie had requested certain foods today, and I made all of them. Even his favorite, sweet potato souffle with marshmallows. But nothing really interested him. He was just mad, and the only way Peter, my parents, and I could have dinner, was with Peter sitting on the couch next to Mattie. It seemed very disjointed, and what drives me absolutely crazy is that Mattie gets snappy and doesn't like hearing noise or people talking. He prefers silence! In many ways our home is becoming prison like. We are praying that as soon as Mattie gets some more independence back physically, a lot of the emotional outbursts, the anger, and anxieties will lighten up. But until that time, the question becomes how do we manage all of these changes in Mattie?
Mattie's occupational therapist, Kathie, is coming over tomorrow, and our nurse Sandra is coming back. Hopefully that interaction will go better since Peter will be home, and there will be two of us to help Mattie through the visit. We end tonight with this quote. Happy Thanksgiving!
Tonight's picture was taken in November of 2003. Mattie was a year and a half old and that evening we were dancing in the kitchen. I am so glad that Peter captured this moment in time. Doesn't Mattie look like he was having a ball?
Quote of the day: Mostly it is loss which teaches us about the worth of things. ~ Schopenhauer
Last night, after I put my dad to bed and my mom went upstairs for the night, I forced myself to sit at the computer and begin this two day course I signed up for. As you can see it is entitled, Evidence Based Strategies for Helping Clients Make Meaning After Loss. I need to complete 40 hours (every two years) of continuing education to maintain my professional license. Truly at this point in time, focusing, sitting still, and learning are all hard for me. Especially when I have had a very full day. Nonetheless, I am trying to pull it together.
I was able to focus for about one hour and 15 minutes last night. I felt proud of myself for doing this and several things struck me about the webinar. One of which is I am not wild about the presenter. I appreciate she has a sense of humor, but her laughter makes my head spin. Putting that aside, she mentioned the term "assumed familiarity." We all operate under this assumption at any given hour of the day. It is a natural way, I believe, our brain compensate.... the brain looks for the familiar, for patterns and then we automatically make determinations, without thinking sometimes. She gave the example of participants walking into a conference room. There are certain givens and expectations we have as participants, based on previous experiences. Similar is true when we think about death.
We all have assumed familiarity about death, in the sense that we like to think that death only happens to people who are older, or who are not in good health. We also operate on the notion that children will grow up and live long happy lives. Both are assumptions and as we know, neither are always true. Yet our assumed familiarity with death can get in the way of our grief story. What I have come away with after only an hour is the goal on moving forward with the grieving process means two things, one that we can experience emotions (both positive and negative) and two we can re-regulate ourselves (meaning we can find ways to cope and manage the chaos of grief). Sounds simple, but it isn't, and it takes a lot of work to get to this point.
The other thing she talked about that caught my attention was the history of grief. Starting with Freud, who coined the term "grief work." However, Freud believed that to cope with grief meant to detach from the deceased. In order to reinvest in a "new object." I can see why his framework is not stand up to the test of time, as grief work today is the exact opposite. It involves finding a way to live with the memory of the deceased and integrate that memory into one's everyday life. I can only imagine if I lived in the early 1900's and was dealing with the loss of Mattie, Freud would most definitely would have thought I was pathological.
Though it is just the three of us for Thanksgiving, we did buy a turkey. It is my first turkey ever purchased from a farmer's market. I have struck up a connection with the owner of Ward's Family Farm. We visit Angela every Saturday at our local farmer's market. She raises chicken, pigs, and turkeys. Her meats are always fantastic and when I took this bird out of its packaging today, it was the cleanest thing I have ever seen. Usually I spend a lot of time cleaning out feathers, fat, and other stuff from a store bought turkey. I have also learned recently that many people do not like turkey. They think it is too dry. I really believe it is how the turkey is cooked. If cooked properly, it is usually great.
While listening to the radio this morning, I heard a representative from a major turkey company talking about prepping the bird. She said.... do not wash it. In fact she also said that it needs nothing other than salt and pepper before roasting. I don't share her philosophy what so ever. I have always washed the turkey and marinaded it the night before in orange marmalade, lemon zest and lemon juice. The next day, I combine orange juice and maple syrup and pour it all over the turkey, while it roasts. It guarantees NO DRY turkey!
I also assembled the stuffing. It is made with sourdough bread, dried cherries (you can use cranberries too), apples, onions, celery, and fresh parsley. Not to mention butter, white wine, and chicken stock!
I picked my dad up from the memory center today and we all went out to eat. I am thrilled that Clyde's is featuring coq au vin. It was delicious!
Given yesterday's doctor appointment, we decided to up my dad's Ritalin dosage. He takes it twice a day now, rather than once. Today was his first double dose. I gave my dad his second dosage right before lunch. What a huge difference. As you can see, he was alert and he was also chatty. A night and day difference from yesterday when he only took Ritalin once that day. Typically by 3pm, my dad is exhausted, his head is hanging low, and he can hardly keep his eyes open. I am hoping today is a trend.
Tuesday, November 22, 2022 -- Mattie died 686 weeks ago today.
Tonight's picture was taken in November of 2003. Mattie was a year and a half old. I am not sure Mattie's fascination with our kitchen sink, but there you have it. He would request some times to sit in the sink, look out the window, and play with the items I used on a daily basis!
Quote of the day: Grief is a curious thing, when it happens unexpectedly. It is a band-aid being ripped away, taking the top layer off a family. And the underbelly of a household is never pretty, ours no exception. ~ Jodi Picoult
This morning, I snapped some photos of the two painting we hung on Sunday. The local artist who painted them delivered them to us and she had them framed for us. I think the colors fit beautifully with the rest of our things. I told Kim, I love her work so much that I am looking forward to purchasing more of her pieces for our family room.
I am not sure the photo does Kim's work justice. On an aside, you may notice the stuffed lioness on the couch? This lioness was given to me by my grandmother, while in was in college. She sent it to me before she suffered a stroke. Since I am born in July, my astrological sign is Leo. So my grandmother wanted me to know she was thinking of her lioness. No matter how many years go by, this lioness comes with me.
I was determined to get to the post office today. These 400 orange envelopes are being mailed to our loyal Mattie Miracle supporters. It is thanks to these individuals that Mattie Miracle is able to accomplish all that it does.
Peter left for Boston today. He will be spending a week there and celebrating Thanksgiving with his family. It is the challenge of geographic distance now, when family is not in one location. Meanwhile, whenever Peter goes away, my dad goes into some sort of hyper alert mode. He wants to know where Peter is, when he is coming back and so forth. He is persistent and will ask constantly. So now I have the dates marked in red on my dad's calendar, in hopes that this will cut down on the multiple questions.
My dad had a follow up appointment today with the doctor. The doctor wanted to hear how the introduction of Ritalin is going. All I can say is.... it's not working. He doubled the dosage today and we will see if there is any change, but I am not holding my breath. Why this new drug? Well about two months ago my dad had an allergic reaction to a bug bite. It was so significant that he had to go on an oral steroid to stop the reaction. While on the steroid, my dad became a different person. He had more energy, was chatty, and far more alert and engaged with the world. So I told the doctor.... how do we get more of this?! The doctor doesn't want my dad on long-term steroid use, which I can appreciate, but so far Ritalin isn't even coming close to steroids.
My dad is chronically exhausted and if I don't prod him to do things, he would sleep the day away. As his caregiver, it is very depressing and also hard to transport him around with this level of exhaustion. My mom insists on going out every day, so of course my dad needs to be in tow. All I can say is, it's not easy. While driving my parents around today, I could see my dad turning his head and looking at my gas gauge. My dad has many obsessive compulsive issues, one of which is the car has to have a full tank of gas at all times. When it isn't full, he gets very anxious. No matter how many times I have told him, I am driving and managing the gas, he can't let it go. My car had a half of tank of gas today. You would have thought it was a national crisis. Within five minutes, he looked at the gauge ten times. He makes me so crazy, that literally I stop whatever I have planned and find a gas station.
I am cooking Thanksgiving dinner for just me and my parents this year. I just can't handle much more. Given all I am balancing, I always start a couple of days ahead and pre-make certain things. Tonight's focus was cranberry sauce (which I have to run through a food mill, as my dad doesn't like the skins of the cranberry) and a sweet potato souffle.
On Thursday, I was bake it and then melt marshmallows on top.
Tonight's picture was taken in November of 2003. Mattie was a year and a half old and I think this photo is hysterical. I must have snapped it because I was capturing Mattie's fascination with a squirrel on our balcony. Mind you we lived on the third floor, so seeing a squirrel on our actual balcony was a rare occurrence.
Quote of the day: You will lose someone you can’t live without, and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They live forever in your broken heart that doesn’t seal back up. And you come through. It’s like having a broken leg that never heals perfectly—that still hurts when the weather gets cold, but you learn to dance with the limp. ~ Anne Lamott
It was a busy day, one of which I couldn't have accomplished without Peter. Peter took our car into the shop at 7am. It needed new brakes and other service. While he was managing that, I was up, getting breakfast together, and dealing with my dad's morning needs. By the time Peter got back from getting the car serviced, he took my dad to the memory care center.
I had an hour at that point to get work done before I had to take my mom for her physical therapy appointment. I spent that time catching up on all Foundation acknowledgment letters for donations Mattie Miracle received in the last four months. Normally I process these letters in a more timely fashion, but now I am lucky I can get anything done. Despite that, if someone contributes on-line, I make it my business to send a thank you email within 24 hours.
I am trying to empty my plate of a lot of Foundation admin work over the next few weeks, as I want to now devote my attention to my licensure CEUs. In theory I should be doing them periodically, but given my daily routine, I am lucky I am doing them at all.
I did go with my mom to her physical therapy appointment. The therapist thinks my mom has plateaued and therefore should stop therapy. My mom has two more sessions with this therapist and then I told her that we would stop and give my mom a break. What she doesn't know is I already got another script for therapy and I am transferring my mom to my dad's physical therapist in January. I am hoping my dad's therapist can make more progress with my mom. My dad's therapist is high energy and a creative thinker about issues and problems. My mom's therapist wants her to use a rollator to walk, and my mom has no interest in this. I want to respect my mom's wishes, but I do think we need strategies to address her balance and walking gait.
After therapy, my mom likes going out for a snack and hot tea. So I took her out for about two hours. She enjoys these outings and the opportunity to talk, check her phone, and be more relaxed without my dad around. My dad is very high maintenance and trying to eat together is becoming more and more challenging.
While I was out with my mom, Peter drove to Bethesda, MD to do a Foundation item drop off at the NIH Clinical Center. As of today, all items have now been delivered to hospitals! It is amazing what we have processed!
I am also happy that I was able to finish updating our holiday mailing database, we got the mailing labels printed this weekend, and stuffed 400 envelopes. I will be dragging these mailings to the post office tomorrow. December is the Foundation's annual drive and that corresponds with our mass mailing to our loyal supporters. There are many moving parts to this mass mailing and back in October we started the process. That is how long it takes me to get it together.
In addition to all of this, our garage door stopped working last night. It is a big deal because this is the primary way I get my parents out of the house. The garage has the best set of stairs out of the house, because it has a railing on both sides of the staircase. Not being able to get out of the garage is a big problem, especially in the cold. Last night, I literally called the company, Garage Door Repair, on their emergency line. I hear their advertisements all the time on the radio! All I can say is they have been fantastic to work with (they called me back two minutes after I left them a message) and as I am typing this, the door is being repaired.
Tonight's picture was taken in November of 2004. Mattie was two and a half years old and around that time, we bought Mattie a small table and chairs so he could play, color, and do activities at his level. This was a typical scene on the table...... Mattie loved trains and could spend hours with imaginative play. Of course, he was never alone, as he had a way of looping in me or Peter in these play schemes.
Quote of the day: Never. We never lose our loved ones. They accompany us; they don’t disappear from our lives. We are merely in different rooms. ~ Paulo Coelho
Last night, Peter and I went out to dinner at our local mall. We met up with our friends Ann, Bob, Tanja, and Mark. It took a lot to get away for a few hours, but it was wonderful not jumping up and down to the bathroom and collecting tissues throughout the meal. When my dad eats, his nose constantly runs. It was a few hours to just be and have a normal conversation!
A somewhat blurry photo of us, but you get the picture. Truly amazing that we could smile. We have been through so much together.
This morning, Kim Richards came over. We met Kim at the Vale Arts Show in September. She is a local artist, who is originally from Brooklyn. Kim delivered us three art works. This butterfly, we purchased at "Art in Bloom" at the Mosaic in the spring. It came with a terrible frame and matting. Kim brought it to her framer, and now it looks perfect to me. It is a watercolor, by an artist who was originally from Maine.
This is one of Kim's works that we purchased and had framed. It is entitled, Friendship and Elegance. Kim went to a Dolly Parton Foundation charity event in Purcellville, VA and received this bouquet to take home. To capture this special event and gift, she painted it..... it features zinnias and dahlias. Kim said that the Zinnia symbolizes friendship, which to me is a wonderful and meaningful gift to celebrate and to have up on our walls.
This is the second painting of Kim's we purchased and had framed. It is titled, At first blush. I have now located where I want these paintings hung, and this will be the next step in the process.
Mattie Miracle Cancer Foundation
P.O. Box 6485
Arlington, VA 22206-0485
admin@mattiemiracle.com
Mattie Miracle 10th Anniversary Walk was an $119,000 success!
9th Annual Walk & Family Festival!
Mattie Miracle 8th Annual Walk & Family Festival was an $88,000 Success!!!
2016 Walk & Family Festival --- an $85,000 success
Number of Visitors Since October 12th, 2008
The Mattie Miracle Logo!!
Click on the logo to access the website
GuideStar --Candid
https://www.guidestar.org/profile/27-1238358
Mattie Passed Away
With heavy hearts, Peter and I said goodbye to our precious Mattie when he died on September 8, 2009 at 7:15am. He fought death for five hours, and he finally fell into a deep sleep. My hunch is he did not want to say good-bye to Peter and I, and it took massive amounts of drugs to ease his suffering.
Mattie in Summary
Diagnosis timetable: July 23, 2008 - tumor in the right humerus; August 1, 2008 - tumor in the left humerus; August 6, 2008 - tumors in the right femur and left radius. On August 6, Mattie was officially diagnosed with Multifocal Synchronous Osteosarcoma. Tumor Resection and Limb salvage surgeries (repiphysis): on October 20, 2008 and November 12, 2008. Percentage of Necrosis: 60% in right humerus; 80% in left humerus; 100% in left radius; 2% in right femur. Chemo began on August 8, 2008: High Dose Methotrexate, Cisplatin, Doxorubicin; Ifosfamide, and Etoposide were added to the treatment protocol on December 1, 2008; MTP-PE was added to the treatment protocol on January 12, 2009. Chest CT scans post surgery:December 5, 2008 – four 3mm lung lesions; January 8, 2009 – CT scans reveal no change in the lung lesions; March 19, 2009 - CT scans reveal slight changes in two of the lesions. With potential increases in size of up to 1-2 mm per lesion. On June 5, 2009, CT scans at 1.5mm cuts (so very refined cuts) revealed that Mattie's lung lesions doubled in size since January. The four lesions are now 8-9mm in size, indicating that Chemotherapy is not working. Median Sternotomy: June 15th, 2009, removed 9 lesions, four in the left lung and five in the right lung. We do know that two of the lesions had calcified indicating bone material was present. This confirms that the bone cancer has metastasized to the lungs and that Mattie's chemotherapy was not effective at fighting the cancer in his lungs. PET Scan: There appears to be a possible variant (i.e something abnormal) in the lower left femur, but as of now it is too small to determine what it really is. Normally, one would biopsy this, but the location is difficult as it involves the growth plate, and with lung surgery imminent, and Mattie just being off of chemo, the advice we're getting is to wait and watch, and to see what it looks like during the next scan. Echocardiogram: Mattie has a reduced LVEF (Left Ventricle Ejection Fraction), which in layman terms means that his heart is not pumping with its normal level of pressure. Although it is not at a dangerous level, the doctors do want to monitor it with a follow-up echo in a few months to determine if this is a temporary impairment or if long term damage has been done.
Washington Post Article on The Mattie Miracle Cancer Foundation!!
An article on Vicki and Pete and the Mattie Miracle Cancer Foundation ran on July 24, 2010, in the Washington Post's Metro section.
Many thanks to Post Reporter Rick Rojas, for doing a great story on us! To read the article on the Post's website, click HERE
Washington Post Article on Reach the Day and Mattie's Blog
In the July 2nd, 2009 edition of the Washington Post, our story and our blog were briefly mentioned in an article regarding CureSearch's Reach The Day event, held June 22-23, 2009 on Capitol Hill.
Click HERE for a link to read the article on the Washington Post's web site.
H.R. 2109: CHILDHOOD CANCER SURVIVORSHIP RESEACH AND QUALITY OF LIFE ACT OF 2009
A bill, sponsored by Rep. Speier has been introduced in the House on April 27, 2009, to improve and enhance research and programs on childhood cancer survivorship. For more information, please visit the link below http://www.govtrack.us/congress/bill.xpd?bill=h111-2109
This video highlights some advocacy efforts to provide more effective drugs for childhood cancer patients and access to better care for survivors. This link also provides information on how to contact your representatives to urge them to support this bill. http://www.youtube.com/watch?v=fQY8vxO_quU
Mattie's Channel 9 Story
To watch the YouTube version of Mattie's video, click Mattie's News Story
or
to Read the actual story on the 9NewsNow site, click HERE
Mattie's Situation
Mattie Had Bone Cancer Mattie had a bone cancer called Osteosarcoma. The diagnosis was: multi-focal, synchronous osteosarcoma. He had four tumors in his extremities: the upper portions of the right and left Humerus, which is the bone that connects the shoulder to the two lower arm bones (the radius and ulna), the lower (distal) left radius (right near the wrist) and the lower (distal) right femur (just above the knee joint). Although commonly found in adults, this type of bone cancer is very, very rare when found in six year old children.
Mattie started chemotherapy on Thursday, August 7, 2008, consisting of several five week cycles containing five types of drugs (Doxorubicin, Cisplatin, high dose Methotrexate, Ifosfamide and Etopicide). After the second cycle Mattie underwent a surgery (Oct. 20) to remove the tumor in his right humerus, and then a second surgery (Nov. 12) to remove the other three tumors. Mattie had three prostheses (both arms and the leg) that use the Repiphysis technology. We also tried an experimental drug called L-MTP-PE in the effort to give Mattie the best fighting chance of survival. It's a shame it wasn't enough.
All of our Family and Friends have done so many wonderful and amazing things for us to help Mattie. For that we are forever grateful. We want you all to know that we cannot thank you enough for these things and your selfless acts of kindness. We cannot adequately express how much your love, caring and devoted attention to Mattie meant to us. God Bless each and every one of you.
We made a deal from the beginning with Mattie to never lie to him about his situation, and we talked him through each step of the way. Mattie knew he had "some bad bugs" in some of his bones, and he knew that the drugs he was given were to kill the bugs, and the surgeries were meant to remove the bugs from his body. Mattie even requested from Dr. Bob Henshaw (who performed the surgery) "to let me keep a bone" once the procedures were over. Mattie did get several pictures of the procedures which he always thought were really neat.
This kind of statement only furthered our immense respect and astonishment that we had for Mattie and his emotional intellect, intelligence, and maturity. It was amazing that a six year-old could so quickly rationalize and embrace a situation and keep such a strong and positive attitude going, when his parents were a pair of emotional and physical trainwrecks. The irony is that Mattie gave us our strength to go on at a time when we should have been giving him his strength to fight.
Mattie's life during the 13 months of fighting cancer was not a normal one, even though we did whatever was humanly possible to make it as normal as possible. Fortunately, we have good friends who helped us get to the right doctors and to the program at the Lombardi Center in what everyone says was record-breaking time, who embraced us and helped us with what was unquestionably the greatest challenge of our lives. Of course, without our family and good friends, life would be a whole lot tougher than it is right now, so for those of you who are reading this, all we can say is Thank You and We Love You. God Bless.