Friday, April 3, 2026

Friday, April 3, 2026

Tonight's picture was taken in April of 2004, during Mattie's third birthday party. That year the theme was Blue's Clues! Mattie loved that TV show and I planned games, a scavenger hunt, and had a magic show for the children. This fellow was a student of mine from the University. He had a side business of doing magic shows and balloon animals. He even brought his bunny, Hobbes, to the party! The show was a hit and you can see Mattie was engaged!

Quote of the day: Even though our time in this life is temporary, if we live well enough, our legacy will last forever. ~ Idowu Koyenikan

In my email box, I received this certificate today from the top tier medical journal, Pediatric Blood & Cancer. One of the articles our research team published is apparently a TOP CITED article. What does this mean? It means that:

This is a research paper that has received an exceptionally high number of citations in other scientific publications, indicating significant impact within the field of pediatric hematology and oncology. These frequently referenced works often highlight critical, high-visibility topics like immunotherapy, clinical guidelines, and major clinical trials. 

To read the article, go to: https://onlinelibrary.wiley.com/doi/10.1002/pbc.31474

Between yesterday and today, I feel that I am receiving signs and reminders that my life has had purpose. First of all, I produced Mattie. From Mattie, I learned that childhood cancer is not just about the medicine. His death, sent me on a quest! Apparently the quest has had purpose and traction, as it is influencing the psychological and emotional care provided to all children with cancer and it is most definitely guiding and influencing evidence based research. WAY TO GO MATTIE! As tomorrow is his 24th birthday, I can't think of a better way to celebrate his amazing life, as his 7 years on this earth and his role in my life matters!

Thursday, April 2, 2026

Thursday, April 2, 2026

Tonight's picture was taken in April of 2003, at Mattie's first birthday party! Mattie had an Elmo themed party, because he was absolutely in love with that red Sesame Street character. Mattie could be multi-tasking or in another room. If he heard Elmo, he literally stopped in his tracks! I remember that party vividly, because Mattie was overwhelmed by the noise, by everyone in our home, and at several points in the party, we had to go upstairs to his room to regroup. Of course back then I thought it was always going to be like that.... but by his second birthday party, Mattie understood the notion of a gathering and loved it!

Quote of the day: Carve your name on hearts, not tombstones. A legacy is etched into the minds of others and the stories they share about you. ~  Shannon Alder

It was a challenging day of caregiving. However, in between those moments, a friend and fellow childhood cancer advocate tagged me on Linked In. She wanted to make sure I saw these postings! 

April 9 is World Psycho-Oncology Day. A Day that brings attention to the emotional and psychological impact of a childhood cancer diagnosis. Naturally this resonates with Mattie Miracle, as our tagline is..... IT'S NOT JUST ABOUT THE MEDICINE! 

The Pediatric Psycho-Oncology Network of SIOP (International Society of Pediatric Oncology -- an international professional organization) has launched a major social media campaign about April 9th. I was touched to see my caricature, quote, and story on-line. 

The quote: "loss of a child is not something a parent ever gets over, but instead the loss and how we cope with it becomes more familiar with time."

The postings says.................

When Dr. Victoria Sardi-Brown lost her only child, Mattie, to cancer, her world shattered. To Vicki, Mattie was her greatest teacher, showing her that childhood cancer is not only about the medicine--- Both the child and the family experience their own personal and shared emotional journey. 

In 2011, Vicki met Dr. Lori Wiener from NIH. Though Lori had never met Mattie, she spoke the same language of psychosocial care. That connection gave Vicki strength to transform pain into purpose. Just two months after Mattie's passing, she founded the Mattie Miracle Cancer Foundation, which helped establish the Psychosocial Standards of Care with Lori's support. 

Today, Vicki's advocacy ensures Mattie's legacy lives on. Her journey shows that while grief remains, it can be carried differently --- turned into compassion, action, and lasting change for families facing childhood cancer. 

I met Lori at the National Institutes of Health in 2011. I got connected to her through one of Mattie's oncologists. She felt that it would be good if I met Lori, because Lori would have some insights on the direction we wanted to pursue for Mattie Miracle. Honestly in 2011, grief and the loss of Mattie were still very raw, despite the fact that Mattie had died two years before. As soon as I met Lori, we just clicked. I found she was speaking my language. Not the language of medicine, but the language of feelings, emotions, grief, and trauma. 

As I always say, Mattie Miracle may have had the vision to standardize psychosocial care for children with cancer, but it is through Lori's leadership, skills, and her ability to assemble an amazing team of clinicians and researchers that the actual evidence based Standards of Care were designed and published in a top tier medical journey. The Standards are Mattie's legacy! His suffering and cancer journey have created guidelines for the psychological and social care of children nationwide, or as I am learning.... worldwide. 

Truthfully seeing this posting today made me pause. When Mattie died, I did not go back to work. I did not earn a salary and I do not have a 401K. That never crossed my mind because I was married and we were a team. However, I live in a society that I know is wrapped up with titles and income. From society's standpoint, I would be considered a failure. I on the other hand feel my calling is bigger than money and income. I am Mattie's mom, and as Mattie's mom my job is much harder than most moms, because I am naturing and keeping alive the memory of a dead child. I refuse to let his memory and life fade away, and I can't think of any better way of keeping his memory alive forever, than through the creation of Standards that will guide the care of ALL children with cancer and their families into the future! 

Wednesday, April 1, 2026

Wednesday, April 1, 2026

Tonight's picture was taken on April 4, 2002, on Mattie's birth date. I will never ever forget this moment in time. I was in labor for two days and by the time Mattie was ready to be delivered, my health was declining. I had a fever, developed my first migraine, and because of the epidural, I was so numb, I had no sensation of pushing. Mattie was born by an emergency c-section. When the doctor pulled him out of me, she commented that he was the most beautiful baby she ever saw. Does she say this to every mom? Probably, but to me MATTIE WAS THE MOST BEAUTIFUL BABY ever! 

Quote of the day: Of all the magic words in existence, words of kindness create the greatest transformation spells. ~ Richelle E. Goodrich

 

For the past two months, I have been working with Zachary and my friend Jane. Zachary was Mattie's best preschool buddy. He is now attending a business program and was required to shadow a non-profit leader. Over the course of our virtual meetings, we decided to work on a visual project together. Zachary and Jane meet with me every two weeks, and during that time, we have worked on developing story boards that highlight our M&M Wish recipients. Honestly this has been such a great project to be involved in because pairing the photos with family quotes is so powerful! To date Mattie Miracle has funded over $70,000 worth of wishes since 2022. I attached one of the slides we created, so you get a feeling for what I am talking about!

As tonight's quote points out, there is indeed magic in kind words. I had the opportunity to electronically communicate with my friend in Los Angeles and my cousin in Connecticut today. They both are well aware of the turmoil and pain I am living with, and frankly as I always say, I will NEVER EVER get over my divorce. But in an amongst the meaningful communications I received today were these two sentences below. They touched my heart and made me smile............................................................................................. 

 

I hope when we get to heaven you will let me come from my small bungalow to the huge mansion you have awaiting you to visit. ~ my family friend

Just know you are amazing and will always be amazing because that is the kind of person you are. You are a 'get things done' and 'how can I help you' kind of girl. ~ my cousin

I have to admit I don't always understand God's plan or why bad things happen to certain people. But I learned this reality years ago in my Catholic education, that we can't always look at things, situations, and issues with our human lens. I have no idea what is in store for my future, how could I? Because what I thought was true for the last 35 years of my life, now no longer exists. If it ever existed at all to begin with! All I know is I take it one day at a time and when I wonder if God is out there and looking out for me, I realize his love shines through in every kind word, card, and package I receive. These messages today reminded me that people know me, they know my character, my integrity, my losses and pains, and they undying commitment to those I love. Amazing how such kindness can transform a day! 

Tuesday, March 31, 2026

Tuesday, March 31, 2026 -- Mattie died 839 weeks ago today.

Tonight's picture was taken in March of 2004. Mattie was almost three years old. That day I was working outside on our deck and Mattie was right there, along side me. He was my little side kick. Naturally there was a car or toy with us too. It was one of the tell tale Mattie signs.... a car or toy was always in tow and of course his sippy cup was never far behind. It may not have been in the photo, but I assure you, that cup was right next to Mattie.

Quote of the day: The past beats inside me like a second heart. ~ John Banville

Last night was very challenging for me, as I had a horrible migraine. I woke up this morning with a terrible headache, but I was at least able to function. I was on a mission today. I wanted to visit Mattie's memorial tree at his school. Saturday will be Mattie's 24th birthday, and I have never missed visiting his tree on these special milestone days. Given all that I have going on, I won't lie, I thought about not going this year. I miss visiting Mattie's tree with my other half, caring for the tree together, and sharing memories of his life together. Now I am the sole keeper of Mattie's memory and legacy. As such I found the inner strength to visit the campus today. I put together ribbons and ornaments last night and packed the car so we would be ready for today. 

Today was not a memory center day, so I had my dad with me. I should have left both of my parents home, so I could visit the tree alone, but my mom wanted to come. Which meant that I had to take my dad too. I toileted him before I put him in the car. But don't you know 15 minutes into the drive, while I was on the highway, he pooped again. Though I typically would have turned the car around and dealt with him, my primary goal was to focus on Mattie. So I literally let him sit in it for two hours. I went to the Foundation's mailbox and then to the tree. I spent over an hour caring for the tree, removing Christmas ornaments and other debris, and then I tied a sunflower ribbon on the tree as well as placed sunflower and butterfly ornaments on the tree. With the wind blowing, the ornaments were twirling and looking beautiful.

Going to the campus is like a walk down memory lane. I remember dropping and picking Mattie up from school each day, I remember all the special events on the fields, and I of course remember his playdates after school. We were only on that campus for one year before Mattie was diagnosed with cancer, but it was a meaningful and memorable year. Mattie loved his school and made solid friendships. Back then, I thought we would have a lifetime together. I could ask why was Mattie taken from me when he was 7? Why are others lucky enough to have healthy children and see their children go from elementary school, to middle school and then high school? I have many questions, but no answers! Mattie maybe gone 17 years now, but time is irrelevant! IT MEANS NOTHING TO ME! The loss of a child is forever. It is very sobering as a bereaved mom to know that there will be NO PARTIES on Saturday and that I lost the one person in my life who I counted on to be able to share Mattie memories with. What I do know is if Mattie were alive today, he would be disgusted with what happened to our family and I know he would be an incredible ally!

Monday, March 30, 2026

Monday, March 30, 2026

Tonight's picture was taken in March of 2005. Mattie was almost three years old by that point. I took a photo of the living room, because it illustrated what I used to refer to as.... hurricane Mattie. This was a typical afternoon of play, things would be everywhere! After each play session, I would clean up and put things back in place. As Mattie got older, he would help me, because I felt it was an important lesson to learn the art of picking up after one's self, and what one had to do as part of a family system. A life skill!

Quote of the day: For a chronic migraine, there are no triggers, life is my trigger. For chronic migrainers there are no cures, there are only patches that will get you through to the next bout. Have we tried, acupuncture, herbal remedies, diets, standing upside down on our heads? Yes. The answer is if we have gotten diagnosed as chronic migraines then we have tried anything, and if by chance we have been able to get up and put our mask on that day please let us wear it, under our sunglasses and large hats. It took a lot to get there, and ain’t nobody got spoons for that. ~ Emily A

It is 5:45pm, and I have a full blown migraine. I was fine all day, and then I went outside to pick up branches and twigs. Also fine. While doing that, I decided to run a load of laundry.... jackets and fleeces for all three of us. What I did not realize, was that in one of my fleece's I had small burnt out lightbulbs in my pockets. I collected these bulbs from the garden lights over the weekend, as I had to replace 12 lightbulbs. Given all I juggle and how I jump from one task to the other, I forgot to throw the bulbs out, and I did not realize they were in my pockets before I ran the laundry. When I opened up the washing machine after it had run its cycle, I found glass everywhere! I spent two hours cleaning up the glass and the stress of this whole incident was enough to bring about a migraine. I could beat myself up over this, but then I remind myself, I am doing the impossible each and everyday! So this is as much as I can write today. May tomorrow be a better day!

Sunday, March 29, 2026

Sunday, March 29, 2026

Tonight's picture was taken in March of 2009. That day Team Mattie gave him this cute bunny hat for Easter. Mattie put on the hat, but if you can tell it wasn't a good or happy day for him. I think as Mattie's cancer journey continued, he felt more and more debilitated and therefore it isolated him more and more from his friends. Mattie was very aware of the fact that his life looked different from healthy children. For the most part, Mattie did not dwell in these feelings like an adult would, but nonetheless, if you scratched the surface, the issues were very evident. 

Quote of the day: As we advance in life it becomes more and more difficult, but in fighting the difficulties the inmost strength of the heart is developed. ~ Vincent van Gogh

Sunday is the only day of the week where I can sleep past 6:30am. However, at 3:45am, I was awakened by the power going out! Yes I am that sensitive that I can be jolted awake with any sort of noise or changes. While I jumped out of bed, I also heard a firetruck and ambulance. It was so loud that I thought it was on my street! It wasn't. I later found out that there was a car accident blocks from me that took down an electric pole, affecting over 300 customers. We were without power for six hours. Thankfully we have a generator, but today, I got a crash course in understanding when the generator is on and when we are on utility power. Literally you should have seen me, as I was walking around the outside of the house in my pajamas trying to hear whether other neighbors' generators were on! The sound outside was intense, as you could hear generator motors everywhere! The reason I did this, was because I have a Ting app that lets me know about the electrical activity in the house. The Ting app kept telling me that power was restored. However, if that was the case, I was confused as to why the generator was on! Which is why I went outside to see if neighbor generators were running, or just mine. I have now learned how to read the Ting app and I understand when they tell me power is restored, they are basically telling me that the generator is running. What I need to then see is a follow up message about being back on utility power. Honestly the things I am learning, I could write a book! I went from someone who knew nothing about the inner workings of the house, to being almost in full control!

Any case, it was a bad start to the day, and it only got worse with managing my dad's irritable bowel issues. I am quite certain the average person would not take him out. It is just too labor intensive. Literally I changed my dad before leaving the house. As soon as we got to the restaurant, I had to change him again, and yet again while eating. All I can say is my parents are lucky that I have a cast iron stomach!

Today I worked on recovering photos from 2016 (if you have been following my saga, then you will know that something happened to my shared drive, in which I lost photos, files, and other documents for decades). This was one of the precious photos I recovered! Taken in July of 2016. The month and year we rescued Indie. In fact we adopted her over the 4th of July weekend, which is why she is named Indie, for Independence Day! Indie was the queen of the household back then, but that all ended when we brought Sunny home in September of 2016!

I found this photo of our garden fountain! This fountain was created for me by Mattie and my other half. It was my mother's day surprise! This beautiful fountain used to sit on the deck of our Washington, DC apartment. It was filled with shells that we found over the years. I miss this fountain, but I will never forget the love and sentiments behind this meaningful gift. After Mattie died, I used to run the fountain, and the sound was a reminder of the special bond we shared. 

Saturday, March 28, 2026

Saturday, March 28, 2026

Tonight's picture was taken in March of 2009. Mattie was admitted to the hospital for his next round of chemotherapy. If you look closely, you can see that the chemotherapy was red in color (Doxorubicin). With each admission, we decorated Mattie's IV pole with 1,000 praying origami cranes. These cranes now hang in my office, but we had great hope that the chemotherapy would work and that it would give Mattie more time with us. What I love about this photo was Mattie's ability to watch a movie and disengage from the infusion process!

Quote of the day: Cooking and baking is both physical and mental therapy. ~  Mary Berry

I got it in my head this week that I wanted to bake Easter themed cookies. As I was searching for recipes, I came across Italian Easter Cookies. Here's the irony of this, when I was a little girl, my grandmother baked cookies similar to this, in the sense that they had the same texture and consistency. My grandmother did not frost her cookies, but in my opinion, frosting always makes me smile. It is more labor intensive to frost cookies, but it's definitely more festive!

The kitchen island was filled with cookies and the whole house smelled like a bakery. Though I have never found baking therapeutic, not like cooking, I did find focusing on this today took my mind off of my usual reflections, worries, and issues. 

Friday, March 27, 2026

Friday, March 27, 2026

Tonight's picture was taken in March of 2009. Mattie was in the child life playroom and doing a hands on activity. This was what Mattie LOVED most. As you can see he took the whole process seriously has he had his googles and gloves on! I have no idea where we would have been without that playroom. It was a slice of peace, where we could take a pause from our scary, uncertain, and stressful reality.

Quote of the day: A memory is what is left when something happens and does not completely unhappen. ~ Edward de Bono

This morning when I dropped my dad off at his memory care center, the program director came out to talk with me. I have been complaining about the center's schedule/activity calendar that is on-line. The schedule is supposed to give caregivers like myself a glimpse at what my dad is doing at the center each day. In my opinion the schedule is so bare bones that it is impossible to understand what the activity is and most definitely it is not helpful in triggering my dad's memory at the end of the day. In any case, as the director was discussing this schedule issue with me, she also suggested that I may like meeting other family caregivers whose loved ones are at the center. Guess what my reaction to that was? If you guessed NO, then you get a gold star.

Group support never resonated with me, not even when I was in graduate school. The problem with groups is I feel either the competition among members (meaning whose situation is worse than someone else's) or I want to help each member and therefore I am unable to focus on my own issues. That is me on a good day, but now, I am not only dealing with caregiving, I am dealing with a horrible divorce, managing a household, finances, the Foundation, and life without Mattie. Frankly as I told the director, I do not see a group that will work for me... I was different before my divorce, but now I am off the charts different. 

Later this afternoon, I sat back down at the computer to try to recover photos and files. This is a massive project that will take months, as the extent of the shared drive issue is far greater than I thought! I focused on 2002 photos today, the year Mattie was born! If I had lost these photos, I would be hysterical. So I recovered many of them and have backed them up. 

This photo was taken on our deck in Washington, DC in March of 2002, a month before Mattie was born. By that point, I was on medical rest, where I couldn't spend much time up on my feet. As you can see, I was very pregnant and holding one of my favorite cats, Patches! Patches was the best! Which was why I nicknamed her, Nurse Patches. If I was sick, she stayed right next to me, and when Mattie had cancer, she did her nursing rounds (that is before we had to board her at the vet for a year, as we were living in the hospital and never home to care for her). 

Thursday, March 26, 2026

Thursday, March 26, 2026

Tonight's picture was taken in March of 2009. Mattie was pictured next to one of his art therapists, Jessie. Mattie created this piece of modern art. Little did I know, but every project Mattie build and designed while he was hospitalized became his legacy items. This painting hangs above my desk and I see it daily, and of course am reminded of this moment in time!

Quote of the day: Leave nothing for tomorrow which can be done today. ~ Abraham Lincoln

This morning my dad's physical therapist came over for a session. My dad works with four different therapists. This therapist takes my dad outside, whenever the weather is warm, and they do the entire session in the fresh air. What I concluded is this WORKS for my dad! He literally walked 25 minutes today on our street. Which is unheard of, because typically he complains and wants to sit down. While my dad was working with the therapist, I encouraged my mom to walk outside too! So she and I walked around the block. At one time my mom walked without holding my hand, but now I can tell she psychologically prefers to hold my hand, so that she doesn't fall. 

I had the plan of acknowledging Foundation donations today! Forget it! I got derailed on a funding application. This application showed up in my email box this afternoon and trust me when I say.... this isn't an easy application. I do it yearly, but ironically it never gets easier, as I have to do an annual report, financials, bar graphs, pie charts, and budgets! I devoted hours to this today and I just submitted the application thirty minutes ago! To me this is a huge accomplishment! 

One of the bar graphs I created today illustrated Mattie Miracle's overall funding from 2010 to 2024. Can you believe that in 14 years, we raised over $2 million dollars for the cause?! 

Mattie Miracle is a labor of love. As I always say, "it is my second baby, in memory of my first baby!" I am very proud of the funds we have raised, the work that we have done and continue to accomplish and of course I am deeply grateful for all of our supporters who stand behind our mission! 

Wednesday, March 25, 2026

Wednesday, March 25, 2026

Tonight's picture was taken in March of 2009. That day we took Mattie to the circus. It was our first and last trip to see the circus. Mattie was gifted a special VIP booth, which enabled him to attend and not be around crowds where he could have potentially gotten sick. It was a big event for Mattie and he absolutely loved it. He was glued to watching the show and before the show started we bought Mattie several light up circus toys. He had a ball seeing them glow when the lights were dimmed in the arena. It was a special moment in time and his smile said it all!

Quote of the day: I go to nature to be soothed and healed, and to have my senses put in order. ~ John Burroughs

This morning after I dropped my dad off at his memory care program, my friend came over to catch up and walk. I haven't walked the neighborhood since her last visit, which was months ago! I used to be a person who walked daily. Sunny made sure of that! But after Sunny died and then caregiving alone, I have had no interest in walking anymore. Which of course is not good for my physical or emotional health. Walking was something I always did with my other half as well! We loved and appreciated nature and even when facing great loss and trauma.... we kept walking. It became a form of our therapy! It is one of the countless things I miss!

If you have been following my saga, I am still trying to recover lost electronic files, photos and documents. I thought the problem was contained to just a few years of photos! NOPE! It is far more extensive and I am desperately trying to address this.... by doing a little recovery work each day! All I know is I have been robbed or a future, there is NO WAY I will have my past erased. 

I have been working on recovering photos from 2023. As I was downloading photos, I came across a series of post it notes! I naturally saved all the actual notes, because they mean a great deal to me. They remain in my closets and I still look at them daily to remind myself that I was loved and this was NOT a figment of my imagination! Keep in mind that I have MANY notes from over the years, but these series of notes occurred in March and May of 2023, which is ironic because by September of 2023, I was separated. If I am confused by what transpired, then all I have to do is look at these notes!  

I used to find notes all over. 

Yes even in the refrigerator!

In my cabinets!

On my dust rags (which I use daily), so it makes sense to leave me a note there!

On my handheld vacuum! Another thing that I use daily!