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 Foundation was 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!

A Remembrance Video of Mattie

April 29, 2023

Saturday, April 29, 2023

Saturday, April 29, 2023

Tonight's picture was taken in April of 2007. Mattie was five years old and the boys were outside on our balcony. This was a space we all loved, including Sunny. The tree you see on the right is an oak tree. That tree provided us with countless leaves during the spring season, when Mattie would collect caterpillars. The only leaves these things would eat were oak! Not a problem to find oak leaves in Alexandria, VA, where Mattie retrieved the caterpillars. It was much hard for us in the city and given that Mattie loved observing the metamorphosis process each spring (caterpillar to moth), I will always be grateful to this mighty oak! It provided many successful moth release parties on our deck! Of course the building in the background of this photo is the Kennedy Center. It was a wonderful experience to live in the city and I will never forget our time there. 


Quote of the day: Caregiving is a constant learning experience. ~ Vivian Frazier


I am very tired today. After taking my parents out for an early dinner, the drive home from Maryland did me in. I feel very car sick with all the stop and go traffic. Therefore, I am sticking to happy photos tonight. 

Peter bought all these canvas gardening bags and we are trying them out this year to grow all sorts of vegetables! So far the romaine lettuce is incredible and I look forward to our own cucumbers, onions, garlic, tomatoes, squash, and eggplants!

Two different types of green beans and tomatoes. 
Pops on color on our porch!
Peter knows I am a petunia fan. To me they are happy flowers! Peter planted a couple of planters today with Mattie Miracle colors!


April 28, 2023

Friday, April 28, 2023

Friday, April 28, 2023

Tonight's picture was taken in April of 2008. Three months before Mattie was diagnosed with cancer! I would never have guessed that Mattie was sick or how our lives were going to profoundly change from looking at this photo! Mattie LOVED being outdoors and though he was outside to help me water some of the plants, what landed up getting soaked was Mattie! This was of course intentional!


Quote of the day: A river cuts through a rock not because of its power, but its persistence. ~ Jim Watkins


It was another long day on the Farm! Both of my parents had physical therapy today. My dad's therapy was at home. After he completed his session, I got him into his recliner and let him rest. Meanwhile, my mom was napping while my dad had his therapy session. So I had to get her up again and I drove her to the hospital for her therapy session. The amount of driving and herding of people I do in any given day is remarkable. But after a while all of this can become tiring. 

Don't think while my parents are in therapy I get a break! Nope, I am either observing or participating in the sessions. Once my mom's session was over, I drove back home, let her freshen up, got my dad up and toileted, and then loaded them back in the car to take them out for an early dinner. Which amounts to another 40 minute car trip each way. 

After dinner was over and we got home, I helped my dad to his recliner. On the walk to the recliner he asked.... "are we eating in or out?" He did not remember that we literally just drove back from the restaurant after eating there for two hours! His memory is truly gone and the shell of a man that is left over is challenging to face. However, like when I provided care for Mattie, I don't dwell on the reality of the situation for very long. I instead remain focused on the task. I live in the present, in the here and now, and I do not like evaluating what tomorrow will or could hold. This was how I lived my life in 2008 to 2009, and I once again have adopted this philosophy. To me it is the key to survival. 

April 27, 2023

Thursday, April 27, 2023

Thursday, April 27, 2023

Tonight's picture was taken in April of 2008. It was the spring fair at Mattie's elementary school. It was a day I will never forget. Mattie was thrilled to be with his two best friends (Charlotte and Campbell) and together they rode the mini train around the campus. There were games, food, cotton candy, and the time to be together and to celebrate the end of a school year! I of course thought Mattie would participate in MANY more spring fairs. But cancer changed that reality! I am so glad I never missed an opportunity to get involved in Mattie's kindergarten experience, because in one short year we made many memories together at his school. 


Quote of the day: Start by doing what’s necessary; then do what’s possible, and suddenly you are doing the impossible. ~ Francis of Assisi


This is a painting my dad came home with yesterday from his memory care center. My dad claims to NOT be artistic and for over a year NEVER participated in ONE creative project at the Center. I assure you the Center does all sorts of fun projects and my dad has always refused to participate. I can tell what his class is doing each day because I have the schedule for each day he attends. 

When my dad came home yesterday we were all in SHOCK when he handed us this painting. Honestly if his name wasn't on it, we would have assumed he took someone else's art home! I joke NOT!

My dad has the tendency now to be part kleptomaniac. He takes home all sorts of things from the Center. Such as pencils, markers, pens, tampons, paper towels, books, exercise bands, other people's class work and the list goes on. Peter and I make a pile of all the things he brings home each week and then we return it to the Center. 

When we asked my dad why he decided to try painting, he truly had NO answer. All I can deduce is there was a stencil of this bird house on the canvas and with that he decided to paint it in. But here is the curious thing! My dad's chair at our kitchen table faces this handmade blue bird house. My dad sees this particular view every morning. 

Look at this actual birdhouse and then look at his painting? To me there are great similarities! You should also know that we have MANY cardinals in our backyard and my dad loves watching them. 

When I look at his painting above, it is fascinating to me that he chose to paint the house a similar color to the one in our backyard and he featured a cardinal on top of his house. Just when I think NOTHING is being absorbed, this painting seems to tell me more. 

The joke I have going with my dad is he is the next Grandma Moses, the American folk artist who started painting at age 78! He got a chuckle out of that. I even wrote my dad's memory care center today to praise them for getting him involved in art yesterday! I wanted to alert them that he is proud of his masterpiece and therefore seems more willing to get involved in other creative projects. Needless to say, I am in the process of framing my dad's first piece of art! 

April 26, 2023

Wednesday, April 26, 2023

Wednesday, April 26, 2023

Tonight's picture was taken in April of 2008. That day, I spent some time in Mattie's kindergarten classroom and got to see his Writer's Workshop material. Ironically Mattie HATED Writer's Workshop. This was where the children would generate stories and illustrate their work. Mattie liked the illustration part, but wasn't confident in writing and reading. He was struggling to spell and generate sentences. I have no doubt he would have figured this out in time, but unfortunately time was not on Mattie's side. 




Quote of the day: All the art of living lies in a fine mingling of letting go and holding on. ~ Havelock Ellis


It was another long day here. I got my dad off to his memory care center and then I took my mom to her physical therapy appointment. Regardless of what any one says, I am quite certain she has a neurological issue, which goes beyond just having dementia. She has trouble balancing, is wobbly on her feet, in my opinion she shuffles when she walks, and her neck is bent in a very awkward position. I have to constantly remind her to lift her head, otherwise she looks like an upside down letter L. 

Truly when I reflect on what I do in any given day, it makes my head spin. Of course on top of balancing their every need, this is fundraising season for the Foundation. So I always feel stressed, never knowing..... will we raise the funds we need or not? We have been at this for 14 years and I would have hoped by now I could have figured out how to get a steady stream of income for the Foundation without having to fundraise. I still live in hope that I will achieve this one day, but it most definitely won't be while caregiving full-time. 

Please check out our Walk website and get involved:

https://2023.mmcfwalk.com/walk2023/Campaign/Details

Our Raffle is also open! Tickets are only $5. All proceeds go toward our cause:

https://2023.mmcfwalk.com/walk2023/Raffle/Details

April 25, 2023

Tuesday, April 25, 2023

Tuesday, April 25, 2023 -- Mattie died 708 weeks ago today.

Tonight's picture was taken in April of 2008. This was typical of Mattie! He loved examining how things worked, how parts went together, and he especially enjoyed taking things apart and putting them back together again. I am not sure if Mattie ever saw a mechanic work, which was why it fascinated me that he created a car lift out of tinker toys and was checking out what was underneath the remote controlled car. It wasn't unusual for Mattie to pull out screwdrivers from our tool drawer and use them. He started this kind of stuff at age 2!


Quote of the day: No one cares how much you know, until they know how much you care.Theodore Roosevelt


It is 5pm, and don't even ask what I did today! It was another blur of a day, of non-stop chores, driving around, and caregiving tasks. In the midst of this dysfunction, I was on a conference call with our research team. Honestly it is very humbling to be on this call, because it reminds me on a grand level that my life is NOT normal. These women are working, focused, and getting things done. 

Unlike them, I feel exhausted, scattered, and at times hopeless. My days are intense and given the nature of caregiving, not likely to improve. The challenges with caregiving is that the tasks are constantly evolving, because the needs of  older adults only magnify, not lessen. 

The research team tasked me to begin pilot testing the family caregiver survey we designed. When on the call, I freaked out inside about the stress of one more task in my day. However, after taking a deep breath, I addressed this task and started reaching out to my network. It is easy for my to get flustered and overwhelmed now very easily. Mainly because I live with chronic stress, have no down time, and each day I am expected to operate at a high level, responsible for two people who need support. 

What I learned today is I have to take it one task at a time. That I have the ability to figure it out, and not to forget that unlike the research team, I am a survivor in ways they can't possibly personally know.  

April 24, 2023

Monday, April 24, 2023

Monday, April 24, 2023

Tonight's picture was taken in April of 2008. That year Mattie turned six years old. Mattie did have a party, but we also got a small ice cream cake for the three of us to celebrate at home. Ironically Mattie only liked the vanilla ice cream in the cake, and he knew I loved the chocolate. So I would cut out my vanilla and give it to Mattie, and I would take his chocolate. Unlike me, Mattie wasn't fascinated by food. He rarely sat still long enough to eat. Yet by age 6, Mattie was maturing, he was in his second semester of kindergarten, and we noticed a big change in his behavior. He would sit at the dinner table with us, he was braver about trying different types of foods, and we were enjoying this moment in time. Unfortunately, it was short lived, because three months later, Mattie was diagnosed with cancer. 


Quote of the day: People pay the doctor for his trouble; for his kindness, they still remain in his debt. ~ Seneca


While my dad was at the memory care center today, my mom and I joined Peter for a ride to Virginia Hospital Center. Peter was seeing the pulmonologist, to confirm that his issues are indeed allergy related. Since I wouldn't be able to give my mom lunch today, I packed a snack for her to have in the atrium of the hospital while I went in with Peter for his appointment. Typically I take my mom out to lunch on the days my dad is at the Center, but right after Peter's appointment, we had to pick up my dad and then I had to quickly turn it around and go to the cardiac clinic for his yearly electronic check of his pacemaker. So there was no time for lunch, but needless to say, I did a lot of running around!

Certainly Peter is quite competent to go to the pulmonologist without me. But I wanted to go. Maybe for two reasons. The first of which is it is a break for me from managing either of my parent's needs. A sad commentary indeed, no? That I have to go to a doctor to get respite, but this is the plight of being a family caregiver. It isn't unique to me, I know. The second reason I wanted to go was because Peter is NEVER sick. Thankfully! So the fact that he has had a cough since January was concerning to me. I also don't always trust his primary care doctor, who many of know, I call DOPEY. 

The beauty of Peter is he understood why I wanted to go today! He realizes I need moments away from both of my parents, and though it is literally just a moment or two, I take whatever time I can get where I can have normal human dialogue. 

I happen to love our family pulmonologist! He grew up in Rochester, NY and moved to the National Capital area for his residency and fellowship. He is a VERY unique doctor. He comes in and spends the first few minutes getting to know you. Like what doctor does this? He is a human first, which is appreciated by a type like me. Moving passed that, he is highly competent, provides clear and thorough explanations, and you don't feel rushed. He listened to our concerns, he gave Peter an exam, took a chest xray in the office, and then gave him a FeNO test. 

A FeNO (fractional concentration of exhaled nitric oxide) test or exhaled nitric oxide test, in patients with allergic or eosinophilic asthma, is a way to determine how much lung inflammation is present. Nitric oxide is a biomarker for asthma which provides an indication of the level of inflammation in the lungs. The FeNO test, is performed using a portable device that measures the level of nitric oxide in parts per billion (PPB) in the air you slowly exhale out of your lungs. The exhaled nitric oxide test is different from most lung function tests in that you need to blow slowly and steadily, not hard and fast, to get an accurate measurement.

Peter's lungs are clear, he doesn't have asthma, and indeed has allergies. We don't know to what, but it gave me great peace of mind to hear that nothing is seriously wrong with Peter's lungs and on Flonase and Zyrtec or Allegra he should improve over time.

Later this afternoon, I took my dad for his pacemaker check. See that thing that looks like a computer mouse? Well that mouse sits over the pacemaker and provides data into a computer. We learned that my dad's pacemaker is needed 30% of the time. I am so glad we got this surgery done last March, because my dad's electrical impulses were off, and his heart rate would drop in the 40s (normal is 60-100) when actively walking and climbing stairs. Which was dangerous. 

The tech, Bob, was wonderful today. He explained to me and my dad the differences between cardiologists! As not every cardiologist does the same thing. Which truly was news to me. He used caring for an old house as an analogy. This analogy is helpful in making quick, clear distinctions with anyone trying to understand the field of cardiology. So for example the cardiologist who put in cardiac stents in my dad years ago would be considered the "plumber" of the heart world. His official title is an interventional cardiologist. The cardiologist who inserted a pacemaker last year in my dad, is like the "electrician" of the heart. Or better know as an electrophysiologist. Needless to say, I found this discussion clear and useful. Bob then told me that the cardiologist we love and who my parents see every 6 months, is like the "general contractor" of the cardiology world. This doctor knows a little bit about everything regarding the heart, but doesn't specialize in performing the surgeries like an interventional cardiologist or electrophysiologist. Fascinating!

April 23, 2023

Sunday, April 23, 2023

Sunday, April 23, 2023

Tonight's picture was taken in April of 2009. Mattie was home between hospital stays and that day we took him for walk around our neighborhood and the National Mall. Outside of our complex, was a bank of azaleas. So we stopped to take a spring photo and I am so glad that Peter captured this special moment of us together. 


Quote of the day: Unexpected kindness is the most powerful, least costly, and most underrated agent of human change. ~ Bob Kerrey


I got up early this morning because at 10:30am, our friend Heidi, came over to visit for a few hours. Heidi moved from Virginia to Massachusetts in 2017. It is hard to believe I haven't seen her since she moved. In the past, Heidi and I were in the same Zumba class and we would see each other weekly. In fact, I met her daughter, Isabel, when she was in middle school. Isabel got involved in many volunteer projects for Mattie Miracle. Now believe it or not, Isabel is in medical school! Just to put some perspective on timing!

I was excited to reconnect with Heidi and because she was coming to see me, I baked a lemon and blueberry loaf, served a platter of fresh fruit and got out my tea pots for morning tea! I wanted it to feel special. I asked Heidi to come at 10:30, because by that time, I would have completed my dad's morning routine. 

Heidi surprised me with a few gifts. One being these two tea towels. Since I consider myself a person who LOVES famous quotes, it is special to have these two towels. I love butterflies and we have frequent visits from deer, so the theme is quite appropriate! 

The quotes on the towels:

  • It is the sweet, simple things of life which are the real ones after all. ~Laura Ingalls Wilder
  • Dwell in possibilities. ~ Emily Dickenson
The blueberry lemon loaf. It may not photograph well, but I would give this recipe an A+! It was moist, tasty, and not sickly sweet. In case you want the recipe, here it is:

https://www.glorioustreats.com/lemon-blueberry-bread/


Overall, I find it very difficult to be able to talk freely with my parents around. As I am typically juggling their needs and issues. My dad was lying in his recliner while we were chatting at the breakfast table, but of course he never stays seated for very long. So of course, I was up taking him to the bathroom. Then I have noticed that my mom gets distracted easily now, and literally she turned to her cell phone while sitting at the breakfast table and was listening to something in the background. While we were trying to talk, mind you. I managed through all of it, but honestly I can't handle visits that are more than two hours long, because trying to look and appear normal for this period of time takes energy. Energy I do not have! Heidi understood this, so it was a perfectly timed visit, and it gave us some sort of opportunity to reconnect and catch up. Which to me is important, as I feel like I am living on my own private dysfunctional island most days.