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

July 18, 2020

Saturday, July 18, 2020

Saturday, July 18, 2020

Tonight's picture was taken in July of 2007. In typical Mattie fashion, he got out one of this toys to build! That day Mattie used Lincoln logs and created this big tower. Naturally the tower needed a place for a toy car. Vehicles of any kind were very popular with Mattie, and he found a way to integrate locomotion into all his play schemes. Got to love that smile though, no?









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

  • number of people diagnosed with the virus: 3,676,942
  • number of people who died from the virus: 139,748


Just when I thought the paperwork was coming to an end. More was piled on me today for another insurance plan of my dad's. This particular plan requires not only paperwork from us, but from my dad's doctor. So I wrote to the doctor today and attached the document he was asked to complete. Don't you know the doctor asked me to start completing it and then he would review it and sign it. That meant that I needed to complete his form as well as write a letter of medical necessity for caregiving services. Though I am familiar with the medical profession and certainly my dad's case, I am not a medical doctor, nor do I write in medicalese. None the less, I did it, because I want NO EXCUSES! I want all this paperwork to get to the insurer this week! 

Today's scenario with the doctor reminded me of my days in graduate school and all the hoops I jumped in order to get a doctorate degree. Sure you need some degree of intelligence to earn a PhD, but overall getting a doctorate means you have survival skills, and can manage people belittling you, people taking advantage of you, people making you do their work for you, and the list goes on. It is all apparently a necessary form of hazing to get into this prestigious academic club. So when someone now says to me that I have to write a letter or complete a document in order to get to the next step of the process..... no problem! I have no problem doing the work, if it accomplishes my agenda.  


It was a very hot day in Washington, DC. Sunny needed to walk, but we debated about where to take him. We decided on Turkey Run. I can't remember the last time I went to this park. A park that isn't far from where we live. 
Sunny apparently now stops for lizards too! He literally stopped moving to track this lizard. Mattie would have approved. 
In 90+ degree heat, Sunny can walk for about 1.6 miles and then gives up. Nonetheless, we had a beautiful, peaceful and very green walk. Canopied from the sun!
At this point, Sunny gave up and sat down in the woods. Peter walked back to get the car and met us not far from this spot! 

July 17, 2020

Friday, July 17, 2020

Friday, July 17, 2020

Tonight's picture was taken in July of 2007. Mattie was five years old and by that age he was LOVING bath time. When Mattie was a baby and toddler, he hated taking a bath. It was like pulling teeth just to have water next to his skin. But as he got older, he found bath time to be a glorified play time and he couldn't get enough of it. When Mattie did this with soap suds, I always called him, "Santa Mattie." Which made him chuckle. 


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

  • number of people diagnosed with the virus: 3,626,500
  • number of people who died from the virus: 138,979


I maybe 2,500 miles away from my parents, but thanks to technology, I can get a lot accomplished. Today alone, (1) I spoke to the management company of the house my parents just moved out of, to check on when my parents would receive their rental deposit back, (2) I contacted my dad's occupational therapist to find out why he did not show up for his appointment time, (3) I managed an administrative issue for the caregiving company because they were expecting my mom to MAIL them a log of this week's caregiving hours (I don't think so, there are more efficient ways to do this.... starting with sending this information electronically!!!!), (4) I worked out the details on the catastrophic major medical plan and know what my dad's plan will cover regarding weekly caregiving hours, and the list goes on.  

However, it turns out my parents did get their rental deposit check back today in the mail. The owner of the former house they rented decided to deduct close to $200 for a broken kitchen sink disposal and $25 for dust in the garage. I almost lost it and I put my distaste for this decision in writing. First off, my parents never used the sink in the kitchen's island. Therefore there is NO WAY we broke the disposal. When my parents moved into that house in 2018, I was given an EXTENSIVE spreadsheet to test everything in the house. Which I did and made notations next to things that weren't working, were dinged, or had issues. I don't ever remember being asked to check that disposal (frankly I still to this day, did not know the sink in the island even had a disposal, much less where the switch is to turn it on). All I know is we couldn't have broken it as we never used that sink. Don't get me started with dust in the garage. I actually wanted to scream. Who doesn't have dust in their garage? If I knew we were going to get fined for this, I would have swept out the garage. As it is, I moved my parents out of the house, managed an extensive health crisis, and also found the time to CLEAN out the rented house. Yes I forgot to dust the garage, but in the grand scheme of things, a clean and untouched house was returned to the owner. That should have been good enough! I am NOT thrilled with the owner or his lack of compassion. 

On a brighter note.... the beauty of Sunny. He loves his walks, despite the heat. 
He may have been hot, but he is always happy to chase a squirrel up a tree. 
Still staring at the squirrel, but taking a water break before continuing on. 
My fun for today! I took the car to a car wash. Our car wash has become fully automated now. Even how you pay for the wash. You don't get out of your car. I haven't been inside a car wash like this since I was a little girl. So naturally I snapped photos! There were no lines and I was in and out within minutes. 

July 16, 2020

Thursday, July 16, 2020

Thursday, July 16, 2020

Tonight's picture was taken in July of 2007. Mattie was five years old and was full of life and energy. He loved his tents and tunnels. I can't tell you how he integrated these things into his play schemes. I am so happy I was picture happy and snapped the every day antics and adventures of Mattie Brown! 











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

  • number of people diagnosed with the virus: 3,556,403
  • number of people who died from the virus: 138,141


I went for my every 6 month appointment today to see my urologist. I have been seeing this urologist since the Fall of 2009, when Mattie died. It has been a long journey with this doctor. She can be a handful, but she is competent and every referral she has given me has been excellent. In fact, she is the one who found my kidney stone issue. They say when someone you love dies traumatically that parts of your body hold the grief. I would say my bladder is one of those organs. I had an 11:30am appointment, and typically that would be the worst time to see the doctor as she is always running late. But due to COVID-19, things were moving like a well oiled machine. It was awe inspiring and I wish every day in her office was this professional and user friendly! I was in and out in 20 minutes. Unheard of!


When I got back home, we took Sunny for a walk on Roosevelt Island. Look who was crossing the path in front of us? A deer!
She was looking at us! Frozen in her tracks. 
Sunny was getting too close for comfort, so she moved along. 
Watching us from a more secure place!
Sunny was besides himself! Deer and squirrel!
I am getting an education on long term care insurance and catastrophic major medical plans. My dad is big into insurance plans and therefore, he has both at our disposal. Which is wonderful, but now trying to understand what they mean and what they entitle us to is a completely different story. I am grateful that the caregiving and home health company my parents are using are so professional. As we have assigned financial people and case managers who I can call or email. They are helping us navigate a very confusing process! I have no idea how families manage without people like them who are savvy and know what legalese and other terminology means or better yet have access to professionals who can find out the answers for us!

July 15, 2020

Wednesday, July 15, 2020

Wednesday, July 15, 2020

Tonight's picture was taken on July 15, 2007. I could tell it was our wedding anniversary because I used to take out two big goblets for the occasion. The goblets belonged to my paternal grandparents, who were also married on July 15th. That day we had lunch outside on our deck. I could tell that Mattie had been in his swimming pool on the deck, as his swimming trunks were drying in the background. 


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

  • number of people diagnosed with the virus: 3,490,735
  • number of people who died from the virus: 137,235



Then and now! It is our 25th wedding anniversary! We met as teenagers, dated for 7 years, and then got married in 1995. So we have known each other for 32 years! The question is what haven't we survived together? Our lifetime together has been built on friendship, respect, trust, listening, love, and the understanding that life is not always fair or kind. Yet through it all, we have each other and that is definitely a gift.

Want to know how we met? Of course depending upon who you ask, you may hear a slightly different story. Peter's is more humorous, so I am going with that one........................

In the summer of 1989, we were both taking summer classes at Union College in update NY. During the summers, our college opened only one dorm and it was co-ed by room. One day I was in the floor's common kitchen washing grapes. When all of a sudden I heard whistling and someone behind me. It was Peter, who came into the kitchen and proceeded by greeting me with..... "How's choir?"

I gave him a snappy reply saying, "why do you want to know how choir is?" Mainly because I didn't realize Peter was in our college choir with me! Rather embarrassing no? Peter even shared where he sat and where I sat in the choir room. Somehow that did not instill anymore confidence in me. So literally I walked with Peter down the hallway of the dorm and woke up our mutual friend, Dave. I asked Dave if he knew Peter and was Peter in choir? Naturally the answer was... "yes Vicki, Peter is definitely in choir." This was our first interaction! Hard to believe it did not scare Peter away! Instead I would say we have kept each other on our toes ALL these years!




Every anniversary, since 2016, we have celebrated it at L'Auberge Chez Francois in Great Falls, VA. It is a family owned and operated restaurant for decades. It has old world charm, something lacking in most of our restaurants today. The food, much of it comes from their own gardens on the property, is fresh and tasty and the service is always lovely without being overdone. 

I especially love sitting on their terrace overlooking the gardens! I was thrilled to see people out and about and every table that could be filled was! 
I admit that I wasn't even sure I could go to lunch today. I had a horrid night, in which I awoke at 2:45am to feeling nauseous. Why? I have no idea! But my two big culprits are STRESS and a migraine. Needless to say, my anti-emetic that I typically take wasn't working and by 3:45am, everything was coming up the northern route. I knew I did not have food poisoning or was sick with anything else. It is stress and how my body manages it. Needless to say as I was up, so were Indie and Sunny. Not caring a thing about me, but in typical fashion wanting their needs met. That did not go over too well with me! Oh how I miss Nurse Patches (our calico cat).  
Typically I photograph what we order, but I guess I was in a state today and forgot. Well that is until dessert. 

Peter had: Oysters, a garden fresh tomato salad, Salmon and a grand marnier souffle.

I had: a trio of salmon, a tomato salad, halibut, and a fresh blueberry tart with homemade ice cream.
The restaurant always treats you (on special occasions) to their wonderful chocolate ice cream, with berries, and freshly made meringue. I am typically not a meringue fan, but theirs is amazing. 
I literally ate three desserts today... the blueberry tart, the chocolate ice cream and some of Peter's souffle. 
A highlight for me..... hot tea in their beautiful tea pot. 
Look by the lights! A big monarch butterfly was fluttering all around us. I am quite sure that was our Mattie visit for the day. 
One of the waiters recognized us from a previous year. He happily snapped a photo of us. 

July 14, 2020

Tuesday, July 14, 2020

Tuesday, July 14, 2020 -- Mattie died 563 weeks ago today.

Tonight's picture was taken in July of 2007. That weekend we took Mattie to Roosevelt Island to walk. There were several places on the Island that Mattie loved to visit. Including climbing on this big rock. Every time Peter and I pass this rock now, we of course think about this moment in time. 


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

  • number of people diagnosed with the virus: 3,407,798
  • number of people who died from the virus: 136,252



One of the things we are managing for my parents is to sell one of their cars. My dad can no longer drive, and therefore caring for two cars is too much for my mom. We have been working on selling this car for weeks now. Finally, we came to an agreement with the dealership that sold them the car. They are willing to take the car. Wonderful, no? It would be if people actually followed through on their job or their promises. It has been a nightmare working on this from afar. If Peter and I were in Los Angeles, we would have shown up at the dealership in person until everything was done. Not as easy when we are 2,500 miles away! Any case, last night I called to check in on my mom. She was in an overwhelmed, tired, and snappy mood. Which then was directed at me. I get this all too well, as caregiving is not new to me. But by the time I finished a very short call, a migraine was triggered. I literally went to bed last night with my head spinning and unfortunately it did not improve today. Since I got back from Los Angeles, I am not sleeping well and have nightmares every night. Not unlike my sleep when Mattie died. It is interesting how one issue can re-trigger another. 

In the midst of everything else I did today, I started to research delirium. Which I am quite certain my dad developed during his first hospitalization in May. When I arrived in Los Angeles on June 9th, my dad was out of it completely! My mom reported this to be a sudden decline in his cognition, and I knew the stages of dementia don't move this quickly. Yet people with dementia are susceptible to getting delirium, especially when hospitalized. Because of COVID-19, my mom wasn't allowed to visit my dad in the hospital, and I am quite sure with months in lock down and then hospitalization, it was the perfect storm for my dad to develop delirium. As not having the consistent routine of leaving the house, having lunch out, and interfacing with the world, prevented my dad from maintaining a certain level of cognitive function. Which is why I psychosocially blame COVID-19 for my dad's cognitive and physical decline.  

In any case, I wanted more information on delirium and dementia and came across the wonderful article below. The article connected me to an informative site about brain training and its importance of expanding our cognitive reserves, to combat the development of dementia. I have been looking high and low for cognitive based exercises on-line for my dad to do daily. I found a great site created by a neurologist and I enrolled myself, so I get one free brain exercise daily. I sent the link to my mom and I am encouraging my dad's caregivers to do these games with my dad daily. 

I am aware of the significant issues my dad is facing. But it seems to me it is never too late to try to stimulate neurons and connections. As I always said to Mattie, I wouldn't ask him to do something I wouldn't do! So I am doing the exercises myself. As part of me fears that I too will develop dementia, and therefore want to be pro-active about physical activity (By the way, activity level has been connected with dementia, as has walking speed. The more active you are and faster you walk, the less likely you are to develop dementia) and brain stimulation.

Delirium in Early-Stage Alzheimer’s Disease, Enhancing Cognitive Reserve as a Possible Preventive Measure:

Delirium is superimposed on dementia (DSD) when an acute change in mental status (characterized by a fluctuating course, inattention, and either disorganized thinking or an altered level of consciousness) occurs in a patient with preexisting dementia. Several studies have reported higher rates of hospitalization in individuals with dementia compared with those without dementia, which may put them at risk for developing delirium. Delirium often occurs in the hospital setting.

The onset of delirium is associated with poor outcomes, including functional decline, increased hospitalizations, increased health care use, nursing home placement, and death. A study by Fick et al. (2005) found patients with DSD had the highest health care costs and use compared with patients with delirium alone, dementia alone, and those with neither dementia nor delirium. Prevention and improved management of delirium in dementia is clinically important and urgently needed.

Active reserve is often referred to as cognitive reserve and posits that individuals differ in the degree of efficiency with which they can use brain networks or cognitive strategies to cope with brain pathology. These differences are hypothesized to be due to mental stimulation that individuals are exposed to over a lifetime, including level of educational attainment, occupational complexity, and the mental complexity of leisure activities. One possible mechanism for delirium prevention in early-stage Alzheimer's Disease (a form of dementia) is the enhancement of cognitive reserve in individuals with dementia.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2814421/

This brain training program cuts dementia risk:

A large 10-year study investigating the benefits of a brain training program for older adults found that training designed to improve processing speed and visual attention in particular reduced dementia risk.

A decade after training began, the scientists found that 22.7% of people in the speed training group (using cognitive games on the computer) had dementia, compared with 24.2% in both memory and reasoning groups (face to face training without a computer). In a control group of people who had no training, the dementia rate was 28.8%. It's suggested that some of the reason for this effect may be that the training builds up brain reserve, perhaps by improving brain efficiency, or in some way improving the health of brain tissue.

https://www.memory-key.com/tags-problems/prevention-mental

Brain Training that works:

The BrainHQ brain-training program represents the culmination of 30 years of research in neurological science and related medicine. It was designed by an international team of neuroscientists, led by Michael Merzenich—a professor emeritus in neurophysiology, member of the National Academy of Sciences, co-inventor of the cochlear implant, and Kavli Prize laureate.

https://v4.brainhq.com/?fr=n&signup=success&v4=true

July 13, 2020

Monday, July 13, 2020

Monday, July 13, 2020

Tonight's picture was taken in July of 2007. Mattie was five years old and visiting Peter's parents in Boston. Peter's mom got Mattie this big Tutankhamen puzzle. Mattie assembled the puzzle and then we joked with him..... who was taller, Mattie or the puzzle? Naturally Mattie wanted to find out the answer to this question. Of course by extending his arms and feet out, this made Mattie the winner. 








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

  • number of people diagnosed with the virus: 3,352,696
  • number of people who died from the virus: 135,512


On April 7th, Sunny had knee surgery. Tomorrow will mark week 14th of rehab. We took Sunny to see his surgeon today for his final examination! Fortunately Sunny got good results. His bones are setting and he has been cleared for regular activity. Of course with the intense outdoor temperatures and the fact that Sunny is not used to longer walks anymore, it will take time to build up his stamina and endurance. It has been a hard spring for all of us. 


After his appointment, we took Sunny for a walk on Roosevelt Island. We figured he earned it. As soon as we got on the island, Peter and Sunny spotted this! Do you see it? Wild turkey! The last time we saw turkey on the island was in 2008, shortly before Mattie was diagnosed with cancer. Funny as this sounds, I did not expect or want to see turkeys today. To me seeing turkeys on the island is connected to receiving bad news. In 12 years, I haven't seen one turkey and we are on the island all the time. So why these two today? 
Sunny loves holes! Mainly because things that scurry live in these holes. Sunny gives Peter and I structure, routine, and companionship. He was a much needed addition to our home, and though nothing can fill our home like Mattie, we are happy to have our animals back with us. 
Sunny and Peter! A place Mattie used to love to walk. 
Turtles were out and about in the Potomac River today. Mattie was a turtle fan, and when he was battling cancer, a friend adopted a turtle for Mattie in the Caribbean. The turtle's name was Roxanne. We used to get updates on Roxanne and could track her where abouts! So I got used to all things turtle! Out of tradition I snapped a photo of this one today! 

I got a call from my dad's physical therapist today. He is a wonderful person. He wanted to update me on my dad's progress and we chatted through some things. I am grateful that Jon wishes to continue to work with my dad long-term, even when insurance stops paying. An extraordinary individual! We fielded other calls today, everything from my parent's car, to long term care insurance. One hopes that things will stabilize, and clearly from where I found my dad on June 9th, he is making great progress. But recovery doesn't happen easily when you age and right now I am still trying to tease out whether his physical and cognitive issues will improve or will they remain this way permanently. Only time will tell. 

July 12, 2020

Sunday, July 12, 2020

Sunday, July 12, 2020

Tonight's picture was taken in July of 2007. Mattie was visiting Peter's parents in Boston. They set up a slip and slide on the lawn and Mattie had his first encounter with this form of summer fun. Naturally, Mattie was cautious about sliding on it to begin with, so he went on Peter's lap first. However, once he got the hang of it, and understood that the water would help him slide, he was good to go! I am so glad we took every opportunity to have Mattie travel around and experience as much as he could in such a short period of time. 




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

  • number of people diagnosed with the virus: 3,288,788
  • number of people who died from the virus: 135,118


We had a slower day today which was very needed. Peter and I continue to have problems sleeping. I feel this is from being under intensive stress for over a month.

After walking Sunny today on the National Mall (which he loves!), we headed back home to tackle our deck. Keep in mind it is in the 90's outside with high humidity. So working outside is challenging and exhausting. But neither one of us were happy with how poorly our deck looked. I also know we have older neighbors who love looking down into our garden in the summer time. All they were seeing lately were dead things and weeds!

The deck is now fully planted, cleaned and watered! 

The plant in the center is the Meyer lemon tree we bought yesterday at the nursery. I requested this tree for my birthday as I am a big lemon fan. I drink lemon juice daily to prevent kidney stones and I cook with a lot of lemon juice. I also love Black Eyed Susans, as you can see!
Things look happier now and of course I have all my garden things on display..... chimes, the sun, butterflies, and stepping stones. 
I am sure I am in the minority, but I even use Clorox on the deck. We have a big building next door to us and they are the WORST neighbors. Whatever debris is on their roof, comes right into our patio. I have to clean our space weekly from the dirt and junk that blows on over. Today, I scrubbed and washed all the grey junk away and we are back to having a beige deck once again.