MATTIE MIRACLE VIRTUAL WALK WAS AN $110,000 SUCCESS!

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

October 17, 2020

Saturday, October 17, 2020

Saturday, October 17, 2020

Tonight's picture was taken in October of 2004. Mattie was two and a half years old and we were on a preschool trip to a pumpkin patch. This is not a preschool I discuss often, because the school was poorly run and Mattie was asked to leave after only a month of enrollment. The director was unstable and Mattie lashed out at her and even bit another student. The director led me to believe that Mattie had a profound problem and her school couldn't handle him. I will never forget the day she called me and said she wanted my permission to put soap in Mattie's mouth. She felt that would stop him from biting. Needless to say, she did not get my permission. The problem wasn't Mattie, it was the director. Pictured with Mattie was Elizabeth, the only lovely individual who worked in the school. Note that the director fired Elizabeth shortly after this photo was taken. It was the preschool from hell. Any case, any field trips that the school took, I always went along to supervise. This is the only photo I have with Mattie and Elizabeth.

Quote of the day: Today's coronavirus update from Johns Hopkins.

  • number of people diagnosed with the virus: 8,086,780
  • number of people who died from the virus: 218,980


This evening friends are getting together to say good-bye to our mutual friend, Mary, who is moving out of the area with her family. I met Mary when Mattie was in preschool. Not the first preschool I discussed above, but Resurrection Children's Center. A preschool Mattie loved and thrived in. So in reality we have known each other 14 years. It is never easy losing a friend geographically, and we certainly want her to know how much she will be missed. I am bringing several things to the outdoor party. Starting with Fall flowers. 










I haven't made this cream cheese torte in YEARS. Probably the last time was when I was in graduate school. However, back then, this recipe was always a hit. It is easy to make and it is a combination of cream cheese, pesto, and sun dried tomatoes. 
https://www.bettycrocker.com/recipes/pesto-and-sun-dried-tomato-torte/0f3cb1f0-4fd4-4199-a1aa-3343623bda3f

Given that it will be cold this evening, the host of the party asked me to make chili. So I decided to make a turkey chili rather than with beef. In addition, I added some new things to our recipe. Such as corn cut off the cob, bay leaves, and red wine.
It is hard to know what pairs well with chili. So I settled on an autumn themed salad. Starting with delicata squash. Ever tried them? To me, it tastes like pumpkin. But you cook them with their skin on and the skin is edible! 
The recipe also called for pomegranate seeds. A tasty but very messy fruit. We had red juice all over the kitchen!
The final product! With maple balsamic dressing. 

October 16, 2020

Friday, October 16, 2020

Friday, October 16, 2020

Tonight's picture was taken in October of 2004. Mattie was two and a half years old. It was a tradition for us to go to every fall festival in our area with Mattie. Frankly this is not something I ever did growing up and since Mattie died, we haven't been back! Mattie loved being outside and he enjoyed picking pumpkins and checking out the hay lofts, the corn mazes, and other fall themed activities. 





Quote of the day: Today's coronavirus update from Johns Hopkins

  • number of people diagnosed with the virus: 8,039,642
  • number of people who died from the virus: 218,448


I never expected to see this in my email inbox today! A message from Shutterfly. Certainly I use Shutterfly and have stored many photos of Mattie on their website over the years. However, I never remember receiving "memory" emails like the one I got today. Needless to say it was a surprise. The message highlighted our life 14 years ago. I am quite certain back then I did not even know children were diagnosed with cancer, much less could die from the disease. 

The message highlighted photos from one of our fall festival weekend trips in 2006! It was a fall tradition, and I think it is ironic that this series of photos would be sent to me today. As I have never received memory emails from Shutterfly before. I am sure there is a logical explanation for the message, but to me, it's a sign from Mattie. 


Meanwhile the highlight of our day was a walk on Roosevelt Island. There is always some wonder of nature to see on the Island. Here is the resident Great Blue Heron. 
Sunny always hears the deer before we see them!
A mother deer and her baby! A sighting Mattie would have absolutely loved. Of course, whenever I see animals with their young now, what pops  into my head is Mattie's reaction! He would always say.... they are just like us

October 15, 2020

Thursday, October 15, 2020

Thursday, October 15, 2020

Tonight's picture was taken in October of 2003. Mattie was a year and a half old. As you can see, he was intrigued by Patches, our cat. He wanted to pet Patches and play with her on his terms. Mattie learned over time that his approach did not work with Patches. Like any cat, you have to approach them on their own terms. Back then, we tried to give Patches a place to escape, so she did not get touched by Mattie. We landed up placing her pouch high up on the plant stand. It worked out well, because Mattie wouldn't reach her, and yet Patches could still be in and amongst our activity. Which she liked. Also notice all the pumpkins. Mattie loved to bring pumpkins home from Fall Festivals, and no picture would be complete without Mattie's sippy cup of milk. Given how much milk Mattie consumed, I always thought he'd have the strongest bones around. 


Quote of the day: Today's coronavirus update from Johns Hopkins.

  • number of people diagnosed with the virus: 7,966,634
  • number of people who died from the virus: 217,601


The last time I went to our Department of Motor Vehicles, Mattie was alive. In fact, I remember walking with Mattie to Georgetown, and waiting for hours to get my driver's license renewed. Back then the lines and waiting times were ridiculous. However, due to COVID, you can only renew your license by appointment! My license expired this year on my birthday, in July. I tried to renew my license in June, but was turned away from the DMV and was quoted the new policy to make an appointment. So naturally back in June, I went on the DMV website to make an appointment. The first appointment I could obtain was TODAY, four months later. I even checked available appointment times in every DMV in Washington, DC. Needless to say, I made the appointment for today! The photo you see here, was how the DMV used to look. Today it was a ghost town, with only six of us renewing are license at one time. 

This was my license from years ago! I preferred this license as it was in color and it looked less like an institutional photo! I showed up at the DMV on time and had all the necessary paperwork in hand to get my renewal and Real ID. The person working with me was quiet but lovely. In any case, as she was processing my paperwork, she saw a discrepancy in my name. So she asked for my marriage license! I literally said... you have to be kidding. Since I have been married for 25 years and this isn't a new change, I did not understand why my marriage license was needed. Nor had I brought it with me! So my representative went back to talk to her manager. What was the confusion? NOT my married name, but my first name. 

When I got my license in DC years ago, they couldn't fit Victoria A Sardi-Brown on one line. So instead, they cut off the A in Victoria. So my license listed my name as 
Victori  A Sardi-Brown. For years I have been Victori! I had gotten used to it, but today, the manager corrected my name in the system to reflect my LEGAL name. Hurray!!!
 
This was today's photo! Mind you it is on a folded piece of paper. As it is a print out of my temporary license until the real one comes in the mail 7-10 days from now. The photo was taken in a very darkly lit part of the DMV. Not my favorite photo, but I got the process over with. 

While I was there, I met two other people applying for licenses. One woman told us she was 48 years old and was not married. She proceeded to say that she always wanted to get married but hadn't found the right person. She said she wanted to marry for love, not just for the sake of getting married. I honestly felt for her but it wasn't the right place to tell her that it is never too late. To keep the faith that there is someone out there for her.......but she hasn't met that person yet. The other person getting his license was there to retake the written test as he was arrested for a DUI. As I am intrigued by people and their stories, waiting to get my license today was both interesting and productive. 

October 14, 2020

Wednesday, October 14, 2020

Wednesday, October 14, 2020

Tonight's picture was taken on Halloween of 2003. Mattie was a year and half old and it was his first time going trick or treating. Back then, Mattie's cousins lived in Washington, DC. So we got together with them and went from house to house. As you can see, we stopped at one house very decked out for the occasion. While others were intrigued, Mattie was less than thrilled. 


Quote of the day: Today's coronavirus update from Johns Hopkins.

  • number of people diagnosed with the virus: 7,891,674
  • number of people who died from the virus: 216,406


One thing I notice now more than ever, is people around us seem eager to talk. Living in the city, makes it harder to form solid connections with neighbors, and making meaningful friendships is challenging. It isn't unusual for people to be walking about glued to their phones and plugged in to purposefully avoid conversations. Yet now that we are into month 8 of COVID lock downs, people seem far more amendable to connect. I saw this in spades both on Roosevelt Island today and in our commons areas of our complex. In fact, one of our neighbors was just sitting outside in the sun, waiting for others to pass him by to have a conversation. So though I worry that the way we relate to each other will be profoundly changed by COVID, what I noticed today gave me hope. Human beings need to talk, we thrive on interactions, and we are social creatures at heart. I guess today inspired me to see that even COVID can't change our true nature.

I am happy to report my dad doesn't have shingles. I would be very surprised if he had it, given he was vaccinated. This is the challenge of being far away and receiving photos. On top of everything else, we are working on updating my parent's wills and durable power of attorney documents. In a way, it seems like it would be easier starting from ground zero, then trying to revise their current documents. You would think it would be EASY to find a lawyer to work with us on this. My parent's original attorney who crafted their estate documents went missing in action. We contacted him in August, and just today (two months later), we actually had a conversation with him. Meanwhile, during these two months of waiting for a response, I reached out to two other attorneys. All I can say is wow! I got the run around with one. So much so that given the level of dysfunction I was experiencing, I did not feel comfortable sharing any personal information with the office. At the end of the day, I learned that NOT ALL LAWYERS are created equal. 

October 13, 2020

Tuesday, October 13, 2020

Tuesday, October 13, 2020 -- Mattie died 576 weeks ago today. 

Tonight's picture was taken in October of 2008. Mattie was in his third month of treatment, but it was before his first limb salvaging surgery. That weekend, Mattie's cousins were visiting from Boston. We all went on a walk together and Mattie and his cousins played by the flag poles near the Pan American Health Organization. Notice that Mattie was holding a toy car in his right hand! Which was very typical of Mattie. Now whenever we walk Sunny passed these flag poles, what flashes in my mind, is this very photo! 



Quote of the day: Today's coronavirus update from Johns Hopkins.

  • number of people diagnosed with the virus: 7,847,714
  • number of people who died from the virus: 215,702

Today I received this photo from my dad's caregiver. This particular caregiver is very good about text messaging me and keeping me in the loop. Which I appreciate. When I saw this photo, I had many questions. Such as when did this rash occur, what part of his body it is on, is it any where else, does it itch or burn?

Fortunately the rash doesn't itch or burn. Perhaps it is just that, a rash. But given that my dad has had everything under the sun wrong with him, my natural instinct is there's a problem! To me it looks like the early stage of shingles. As the rash is on his back and by his rib cage, both on the same side of his body. I wanted to know who else saw this rash, and apparently the in home nurse saw it and took a photo of it, but did not seem alarmed. That doesn't bring me much confidence either to be frank. So my mom is taking my dad to the dermatologist tomorrow. A doctor my dad has seen quite often recently, as he is still recovering from infected bug bites. 

My dad has taken the shingles vaccine too. Or at least the first dosage of the two shots. So one would think this would protect him from contracting the shingles. Shingles is an infection that usually produces a painful skin rash, but the painful tingling sensations which characterize the condition can also occur when no rash is present. Shingles is caused by the varicella zoster virus (VZV). VZV is the same virus that causes chickenpox, a very common childhood infection. After a person has had chickenpox, VZV remains dormant in their body for the rest of their lifetime. If the virus reactivates, which can happen decades later, most often due to a weakened immune system, the resulting condition is called shingles. Although anybody who has already had chickenpox can develop shingles, the condition most commonly affects adults, typically those over 60 years of age.

The signs and symptoms of shingles usually affect only a small section of one side of your body. These signs and symptoms may include:

  • Pain, burning, numbness or tingling
  • Sensitivity to touch
  • A red rash that begins a few days after the pain
  • Fluid-filled blisters that break open and crust over
  • Itching

Some people also experience:

  • Fever
  • Headache
  • Sensitivity to light
  • Fatigue
I know many adults who survived the shingles, but it is important to seek treatment right away. Or better yet get vaccinated for the disease when you are 50 or older. If left untreated, shingles is more likely to result in post herpetic neuralgia (PHN), a condition in which a burning pain continues to be felt in the areas affected by shingles for more than three months after the rash and blisters themselves have disappeared. Approximately one fifth of people who are affected by shingles will go on to develop PHN. The likelihood of shingles spreading to internal regions of the body likewise increases in the absence of a promptly initiated treatment and recovery plan.

October 12, 2020

Monday, October 12, 2020

Monday, October 12, 2020

Tonight's picture was taken in October of 2008. Mattie was in his third month of treatment and by that time, he understood the lay of the land at the hospital. He knew who the volunteers were and when they came to the pediatric floor. Given that Mattie was in the hallway and holding a dry ice snowball, I know that it had to be a Friday. On Fridays, the university's chemistry club came to the unit and always did a hands on experiment with the kids. Mattie loved the club and got along with Chris, the club president. No matter how ill Mattie was, he always eagerly awaited Chris' arrival. Many times Mattie was too sick to leave his room. On those occasions, Chris moved the experiments to Mattie's room.

Quote of the day: Today's coronavirus update from Johns Hopkins

  • number of people diagnosed with the virus: 7,796,625
  • number of people who died from the virus: 215,028


I have a friend who has lived in this area for a very long time. In fact, her children (who Mattie went to preschool with) were born and raised here. She and her family are now facing a move to another state, about 6 hours away. We all cope with moves differently, and ironically though it is my friend who is moving, it evoked all the feelings stored inside of me about moving from New York to California. 

My dad took a job in Los Angeles when I was in 9th grade. I completed 9th grade in NY, while my dad started his job in LA. However, that summer we moved as a family and I started 10th grade in Los Angeles. To this very day, I can still remember how traumatic this move was, and it may explain my feelings about being planted. One would think that moving at an early age would make me more flexible to change. Unfortunately the exact opposite happened to me. I am opposed to change, I face it with a great deal of trepidation, and I am aware of how one decision does affect the trajectory of your life. 

In the article below, it mentioned a study which found between 30 and 50 percent of people who moved regretted their decision to move. That is a pretty high percentage of people. The concept of "place attachment" was also mentioned and it can take up to 3-5 years to develop this attachment to a new place. This attachment doesn't just happen but instead it requires us to actively engage in certain behaviors and actions to make this new experience become a positive fit. For myself, I never developed this place attachment to Los Angeles. I lived there three years and I enjoy visiting it. But that is the extent of it. I did all the things mentioned in the Psychology Today article as a teenager (I left the house, I did social things, and I invested in activities I liked), but it wasn't enough. 

Rather funny how I have internalized my friend's situation, into my own. Given how I feel about moving, I know it is important to keep myself in check when talking to my friend or others who are faced with a move. As people move for all sorts of reasons, and at the end of the day, if you asked me now what I gained from moving to LA... my answer would be I gained a great deal of courage, personal fortitude and a great sensitivity to those who are new to a community. I don't like seeing anyone left out, mainly because I know first hand what it feels like to be different. 


Why You're Miserable After a Move:

https://www.psychologytoday.com/us/blog/is-where-you-belong/201607/why-youre-miserable-after-move

October 11, 2020

Sunday, October 11, 2020

Sunday, October 11, 2020

Tonight's picture was taken on Halloween of 2003. That was Mattie's official year to start trick or treating, as the previous year, he was only six months old. Mattie wasn't into costumes. As he did not like being confined or have anything touching him that was itchy. So together we went to Target, and when I picked this pumpkin sweat suit out, I had Mattie touch it to determine his likelihood of wearing it. It was a successful purchase. But as you can see from this photo, Mattie was upset about going trick or treating using his stroller. Given that we would be going with his cousins, there would be no way Mattie could keep up without a stroller. I would say that the first trick or treating experience wasn't the best, but we did it, and Mattie got a feeling for the nature of the holiday. Which made future Halloweens easier. 


Quote of the day: Tonight's coronavirus update from Johns Hopkins

  • number of people diagnosed with the virus: 7,756,846
  • number of people who died from the virus: 214,742


A family friend of ours sent me the article entitled, "Dr. J Mack Slaughter Focuses on Healing the Spirit." I attached the article below for you to read it for yourself. I am always intrigued when I hear a medical doctor talk about something OTHER than the medicine. In this particular case this emergency room physician started a non-profit called Music Meets Medicine. In other words, he clearly understands and values the psychosocial aspects of care and believes that meeting these needs impact medical treatment and outcome. 

So how did this doctor get that clued in? To some extent, I would say that it is most likely him as a person. But he does credit supporting his mom through breast cancer. While undergoing treatment, she had to put her hands and feet in iced cold water, to prevent her nails from turning black. To distract his mom, he turned to music and he saw how effective it was for her. 

What also caught my eye in this article is his use of the word psychosocial and his honestly about confronting physician burnout. I think burnout leads doctors to treat patients more like numbers in their vast data pool, rather than treating the whole patient. This doctor wants to heal the soul, and that clearly can't be done through the medicine. I celebrate physicians like Dr. J Mack, who are this aware, compassionate, and willing to think beyond the medical box to support patients and their families!

As for music, I know first hand that it works! It is very therapeutic for the patient and the family. In fact, the very  first night Mattie received chemotherapy, we met this dynamic duo.... Jerry and Nancy. They were musicians and volunteers at the hospital. They literally visited us every week. We loved them! That first night, we were so scared about Mattie getting chemo, but then Jerry and Nancy came in and we all started singing around their keyboard. It transformed the room and our mood! This photo was taken in April of 2009. By that point, Jerry and Nancy knew Mattie very well. So much so, that Jerry would email me the day before they were coming to the hospital. Jerry wanted to play name that tune with Mattie and wanted to make sure that Mattie knew all the songs he was planning on playing. That night, Mattie guessed all the songs correctly and they gave Mattie a gift. 

After Mattie died, Jerry and Nancy continued their friendship with us. To this day, we meet them for dinner. I will never forget their kindness, their compassion for what Mattie was facing, and I am impressed they understand how important it is to us to continued their friendship with us. As I consider them Mattie memory makers. 

Dr. J Mack Slaughter Focuses on Healing the Spirit

https://magazine.tcu.edu/spring-2019/j-mack-slaughter-music-meets-medicine/