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

February 19, 2025

Wednesday, February 19, 2025

Wednesday, February 19, 2025

Tonight's picture was taken in February of 2004. Mattie was almost two years old. That day we took him to the Natural History Museum in Washington, DC. Mattie was looking up at the huge 11 ton African Elephant in the Museum's rotunda. Look at Mattie's expression. To me it was absolutely priceless! Looking at the world through Mattie's eyes is something I will never forget. 

Quote of the day: Courage isn't having the strength to go on, it is going on when you don't have the strength. ~ Napoleon Bonaparte


Today, I came across this article, Women who are deeply unhappy but too strong to admit it usually display these habits, says psychology. The title caught my attention, so I naturally kept reading! The article highlights how many women around the world have a hard time openly talking about their unhappiness. Honestly women juggle so many things now a days, that it is quite easy to feel overwhelmed and unhappy, and who has the time to truly focus upon it? This is a common thread that I think ALL women face! Which is why I think this article is worth perusing. 

The article goes onto to say that women who are deeply unhappy, but too strong to admit it, often exhibit certain behaviors. Six behaviors to be specific and they are:

  1. They are perfectionists
  2. They avoid social gatherings
  3. They're overly selfless
  4. They lose interest in things they once loved
  5. They have trouble sleeping
  6. They constantly feel tired
  7. They hide their true feelings

You want to know what I thought of these six behaviors? I thought they were spot on! I exhibit all six! However, what I also quickly assessed, is that these same six behaviors can be exhibited in anyone facing and coping with loss and trauma. So which came first..... the unhappiness or the loss and trauma? In my case, it is multiple losses and traumas, all wrap around each other, culminating in my intense unhappiness. These six behaviors weren't earth shattering to me, but they do call out a word I haven't used to describe myself... UNHAPPY!

My mom was on Facebook last week and saw people talking about pasta frittatas. My first reaction was, WHAT? This is not something I grew up eating and neither grandmother ever made such a thing. I looked up the pasta frittata and its origin is Naples, Italy. It was a meal that evolved after WWII, when food was more scare, yet people did not want to waste left overs. You literally can throw left over pasta, meats, and vegetables into a pasta frittata. I stuck with something more basic tonight.... a pasta frittata with prosciutto and parmesan cheese. 

This is an easy meal and my dad had three helpings. So it was a hit! The next one I want to try is this one!


February 18, 2025

Tuesday, February 18, 2025

Tuesday, February 18, 2025 -- Mattie died 782 weeks ago today.

Tonight's picture was taken in February of 2008. That weekend we took Mattie to Roosevelt Island. A park we visited regardless of the season or weather! It was so close to home and Mattie loved it! I tried to save up bread for Mattie, so that when we visited the Island, we would have a supply. Mattie loved feeding the ducks! 

Quote of the day: Your friends will believe in your potential, your enemies will make you live up to it. ~ Tim Fargo


This morning I met with the electric company and had to notarize a document about the placement of this large transformer box. Truly, you can't imagine how big this box is, until you see it for yourself. Two weeks ago, I learned this big box was going to be installed along my front property line. Meaning, though it wouldn't be on my property, it would be very visible from all my front windows, not to mention an eye sore from the street. It was just happenstance that I learned about this box placement. I will always be grateful to the contractor on-site who chatted to me and my neighbors about this installation. In any case, after a lot of advocacy, this box is now sitting among trees and bushes, camouflaged from view. I am very grateful to the team lead that met with me this morning, who listened to my concerns, and thought outside the box about preserving the natural beauty of the property. 

When I came home with my parents this afternoon, I felt something was off! You know that feeling, that something is different, but what is it??? As I approached my driveway, I noticed this box with a yellow sticker. This box wasn't there this morning! So naturally I contacted the electric company as I want explanations regarding this splice box. A box I did not know was going to be installed, and installed on my property no less.  A splice box houses and protects wire connections (splices) between different electrical cables. Not only do I now have the box, but I have dirt all over the place in piles. 

So I await answers!

Later today, I went out to the backyard to pick up fallen branches and sticks from the wind storms we have had over the last two days. Mind you, a large bin just like this one was picked up by our trash service today. I can't keep up with the fallen debris! 

There are some days that I just seem to get by, managing tasks, bills, caregiving, and issues. Then there are days when I really miss my life, or what I thought my life was like and was going to look like in the future. I miss so many aspects of my life and it is a feeling that is hard to convey, probably hard to listen to or to even understand. Which is why some days I am mad, some days I am sad, and some days I don't see a way forward. Yet I have to pull it together, because tomorrow will be somewhat of a repeat of today.  

February 17, 2025

Monday, February 17, 2025

Monday, February 17, 2025

Tonight's picture was taken in February of 2009. This was what a typical physical therapy session looked like for Mattie. Truly incredible if you think about it! In the conga line (from front to back) was: Mattie, Jenny (Mattie's art therapist), Denise (Mattie's social worker), Jessie (Mattie's art therapist), and a physical therapy intern. The hand you see on the left holding the IV line was Anna, Mattie's physical therapist. Truly I have NO IDEA what I would have done without these incredible ladies. To this day, I still communicate with Jenny, Denise, and Anna. That is how significant and lasting a bond we created under the worst of circumstances. Through Mattie's cancer journey I learned so much about people, true friendships, and courage, and I witnessed the extraordinary feats of compassion that we experienced every day from our care team and Team Mattie. 


Quote of the day: It’s your reaction to adversity, not adversity itself that determines how your life’s story will develop. ~ Dieter F. Uchtdorf


It was a busy morning in my house! My dad's physical therapist had a session with him today. My dad has three different therapists that work with him, and this particular therapist typically works with my dad at his memory care center. Therefore, I do not get to see their sessions. But today, the session was done at our home! I have to tell you, I was stunned by what I was seeing. My dad was walking at a quick pace, was alert, and did not tire out from therapy. This is a night and day experience than I have with my dad, and what I observe during my dad's in-home sessions with his two female therapists. Today's therapist was a man, and I am not sure if it is a gender thing or what, but my dad was compliant and energized. Ironically this therapist says this is how my dad is when he works with him. Which led us to question..... why isn't he like this with the rest of us????? When I walk with my dad or ask him to do anything physical, it is like he is walking through taffy! Everything is labored and he gets out of breath. Which was why today was glorious to see, because this was the energy level I saw my dad at in 2021. It is possible today was an off day, but this is NOT what the therapist reports!!!!

While juggling the therapist, I had our landscaper visit. I have a team of two men that I work with to help me care for the property. I had Steve over today because I couldn't get the outside lights to work. The lights you see here have been off for over a year, making it very dark outside. I had my electrician look at this problem in the fall, and he felt that it would take him hours to trace the lines alone, to figure out the problem. He recommended me to contact my landscaper. You want to know how long it took for Steve to identify the problem? Try five minutes. Within minutes, he found the wire that had been chewed through by a chipmunk! When my Sunny was alive, we had NO squirrels or chipmunks in the backyard. Mainly because he would chase them right off the property! But without my herding dog, all the critters are back!

I can't tell you what a glorious sight it is to see the backyard lit up again... and then there was light! It feels like a miracle. This is today's blessing! 

February 16, 2025

Sunday, February 16, 2025

Sunday, February 16, 2025

Tonight's picture was taken in February of 2009. I snapped this photo because to me, Mattie was the ultimate multi-tasker. He was eating a donut, while playing with this cars and toys. There were actually several big pots on the floor filled with water, as Mattie loved water play. Truly he was a remarkable fellow, because despite how sick he was, he was still smiling! So much can be learned from Mattie. 


Quote of the day: She stood in the storm, & and when the wind did not blow her away, she adjusted her sails. ~ Elizabeth Edwards


I sometimes lose faith and wonder, does God love me? Or why am I being challenged over and over again? There are no answers, but as one of my dear friends reminds me, God is always with me and the reason I haven't crashed and burned, is because he IS watching over me. When she tells me this, it always makes me pause, to absorb what she's saying, and to consider that this maybe a possibility. 

Today was another difficult day. On top of all the other issues I balance, my dad has irritable bowel syndrome (IBS). Typically I deal with non-stop bowel movements, but today, I was faced with his constipation. Truly the combination of IBS and dementia is diabolical, because my dad gets fixated on an issue and it becomes so overwhelming to manage. I tried getting him to drink more fluid and to walk, in hopes that he would go to the bathroom, but the only thing that accomplished was more emotional agitation and his non-stop moaning. When I tell you moaning, I am not kidding. Of course, between myself and Mattie, I have faced just about every medical crisis. 

When Mattie used to get sick, prior to his cancer diagnosis, I had to give him Tylenol suppositories, because he refused oral medication. Therefore, I became an expert in administering suppositories. Fortunately for me, because today I administered a Dulcolax suppository to my dad. This is not a first for me with my dad. I have given him suppositories and an enema in the past. Perhaps I missed my calling and should have been a nurse! Nonetheless, I am like a walking pharmacy, and keep all sorts of things on hand. Thankfully, because without this intervention today, I am quite certain I would have had to take my dad to the hospital, like I did in 2020, when he developed an impacted colon. 

Each day provides a different sort of crisis to manage. It isn't just managing the constipation, but it is managing the emotions, fear, pain, and anxiety that comes with it, from both my dad and my mom. Literally by 2pm today, I was frazzled. But of course I had the rest of the day to navigate. 

At one point in the day, it was actually warm. I went outside, picked up sticks and branches and replaced burnt out light bulbs in our landscape fixtures. Then I was able to complete the Foundation's newsletter and put together documentation for taxes. Whenever I can accomplish something, it is a celebration. 

There are times I wonder, will I have the strength to face another day? This is not a feeling that is new to me. As I endured the impossible before when Mattie was diagnosed with cancer, but now I am older and have less support. It is a hard existence and the problem with this is I see no hope for a future. The future I envisioned is gone and course correcting now feels like a herculean task. The best I can do is take it one day and crisis at a time.   

February 15, 2025

Saturday, February 15, 2025

Saturday, February 15, 2025

Tonight's picture was taken in February 2009. That day I was asked to leave Mattie in the child life playroom, so he could work on Valentine's Day surprises. Mattie did not just create one or two things! He created drawings, cards, cutouts, decorated a Valentine's Day box, and made me this heart crown. Mattie's art therapist, Jenny, captured Mattie giving me all these wonderful gifts to me! These gifts are still part of my life today, as I created a special collage from them before I moved into our house in 2021. This collage now hangs on a wall in my office. 


Quote of the day: You don’t need a significant other to lead a significant life. ~ Mandy Hale


As tonight's quote points out, do you need a significant other to lead a significant life? Probably not, but I would say it helps! We are social creatures and to me every aspect of life is better when it is shared with someone. It has been a steep learning curve for me to navigate the world alone. Remember I was married since I was 25 years old, and happily saw the world through two sets of lens. It is a major life change and adjustment to figure things out on my own. Sure I can figure out tasks, I have had to, but what does it mean emotionally to be solo again? Well the answer is complicated, painful, and some days disorienting. In so many ways, that empty feeling I face now, reminds me of when Mattie died. You search, you long, and you hope to find that person you loved and lost. You just can't accept that they are gone, and yet there you have it, and you, your brain, and your heart have to glue the pieces back together in order to function. I did not say thrive, I said function, because there is no thriving, NOT right away anyway. 

This morning, my dad's physical therapist came over and did a session with my dad. I love this therapist, and she has such positive energy and we have many things in common. It just helps to put all of us in a better mood. Later in the day, I took my parents to our local diner. We visit this diner every Saturday. It is not just about food, it is a social experience, as we know the servers and the managers, and with each visit we learn more about their lives and they share photos of their children with us. It makes us feel a part of something larger than the pain we sit with each day. In addition, the diner was playing 50s music today. Well this was like a trip down memory lane for my parents. Which got us talking about Frankie Valli and the Four Seasons. Music is a wonderful therapeutic tool and though my dad has trouble remembering things from one minute to the next, he remembers and feels music. In fact, I would say my dad's love of music passed along to me. 

I was telling his physical therapist this morning, who is also a country music fan, about my Saturday memories with my dad. When I was a young girl, like around 10, every Saturday, I would get in the car with my dad and we would do chores, like visiting the Italian deli, go grocery shopping, and sometimes we even went for ice cream together. But in the process, my dad would have the radio on! The first music that I listened to on the radio was country music. I can distinctly remember the song, Your nobody called today, by Sylvia. If you have never heard it, it is below. All I know is my dad and I would get a chuckle over this song! Keep in mind that my dad is a total family man, and the content of this song could NEVER apply to him, yet we just loved the song! Sometimes we would just break out into a chorus of this song without warning. To me this is beauty of music. Within the notes and lyrics, are wrapped memories, feelings, thoughts, and time periods within our life!

February 14, 2025

Friday, February 14, 2025

Friday, February 14, 2025

Tonight's picture was taken in February of 2009. This to me has to be one of my all time favorite photos! Mattie's art therapist, Jenny, snapped this photo. That day, Mattie was working for hours in the child life playroom with his art therapists. I was not allowed in the room, because Mattie was working on all sorts of Valentine's Day surprises for me. One of his creations was this crown of hearts. When Mattie put it on my head, he then did his signature move.... we touched noses, he looked deeply into my eyes and we then fluttered eyelashes at each other. I can recall this exact moment like it were yesterday, and I truly hoped we would have many more moments like this together. 


Quote of the day: I used to think that the worst thing in life was to end up all alone. It's not. The worst thing in life is ending up with people who make you feel all alone. ~ Robin Williams


This morning, after dropping my dad off at his memory care center, I went grocery shopping. I naturally know that today is February 14, but literally when I walked into the store, I was hit by red roses, chocolate covered strawberries and heart balloons everywhere! In part it was disorienting, mainly because I guess a part of me blocked out what today signified. For me, it is the first Valentine's day unmarried. This brings me no joy or happiness what so ever, as for me, life is meant to be shared with your other half. My first reaction to seeing this sea of RED was to turn around and go back home. But that wasn't realistic, as I needed groceries for the upcoming week. So instead, I took a deep breath and marched along. But naturally I observed men around me buying items to acknowledge the occasion. One man was telling the lady selling chocolate covered strawberries about his wife and the significance of the particular chocolates he was choosing. I thought it was cute, but I am not sure the lady selling the berries felt the same way. 

I am always intrigued by the origins of a holiday. I came across this Good Housekeeping article, 30 Fun Valentine's Day Facts about the Holiday's History, which I thought was precious. I included a list of 10 below, but there are many more, which you can read by clicking on the link!

  1. St. Valentine wasn't just one person: Nobody knows for sure if the holiday originally celebrated St. Valentine of Rome or St. Valentine of Terni, both of whom were martyred. Legends say that St. Valentine of Rome was a priest who defied the Roman Emperor Claudius II's ban on soldiers getting married and continuing to marry couples in secret. Other stories say that he helped Christians escape Roman prisons and fell in love with the jailer’s daughter, writing her a letter signed "From your Valentine."
  2. In the 1300s, it officially became a holiday associated with love.
  3. The first Valentine was sent in the 15th century: Charles, Duke of Orleans, wrote it to his wife while he was a political prisoner in the Tower of London. One of the lines in the poem? "I am already sick of love, My very gentle Valentine." Swoon!
  4. Not until the 1840s did we get the first mass-produced Valentines. Known as the "Mother of the American Valentine," Esther A. Howland sold cards with lace and ribbons that commercialized Valentines in America.
  5. The tradition of giving Valentine's Day flowers dates back to the 17th century. In the late 1700s, Lady Montagu was the wife of the British ambassador to Turkey. She misunderstood a local custom of using rhyming words to convey secret messages and thought the flowers themselves that were used in the rhymes represented secret meaning. This idea of “flower language” caught on in Europe, where specific flowers could represent feelings of love, hate, regret and more. Over time, red roses became more and more linked with romance.
  6. Nearly 250 million roses are grown in preparation for Valentine's Day each year.
  7. The color of flower given on Valentine's Day holds meaning.
  8. Americans spend a lot on love. Americans spent nearly $26 billion on Valentine's Day gifts in 2023. People are also expected to spend an average of approximately $193 for Valentine's Day.
  9. Americans send 145 million Valentine's Day cards each year (and that's not even including all those kids' Valentines exchanged in classrooms). This makes Valentine's Day the second biggest holiday for exchanging greeting cards after Christmas.
  10. People also spend millions of dollars on gifts for their pets. In fact, around 27.6 million American households gave Valentine's Day presents to their pet dogs in 2020, and more than 17.1 million picked up gifts for their cats. All in all, American households spent an estimated $751.3 million on gifts for their pets on Valentine’s Day.

I could lament about all that is missing in my life, and that could fill up pages and pages. But instead, what I am going to focus on are the things I am grateful for today:
  • I am grateful to be Mattie's mom, and his crown of hearts (above) which I incorporated into a collage that hangs on the wall in my office, is a reminder of our love. 
  • I am grateful for the text messages, notes, and cards I received from friends.
  • I am grateful for the wonderful chocolate covered strawberries and brownies I received from a dear friend. 
  • I am grateful that I am physically healthy and can manage my parent's care.  
  •  I am grateful to have the love of Miss Indie!

 


Of course, it is my hope that YOU also know I am GRATEFUL to all of you who continue to read Mattie's Blog! Some of you have been on this blogging journey with me for 17 years! We have become good friends through words, reflections, photos, and memories! Thank you for loving Mattie, his life and his legacy.  

February 13, 2025

Thursday, February 13, 2025

Thursday, February 13, 2025

Tonight's picture was taken in February of 2009. Mattie was pictured with a homemade frosted cupcake. In between hospital visits, I would bake two dozen mini cupcakes to bring to the hospital, and I used them as incentives. After Mattie completed a physical therapy session, he would get a cupcake. Since Mattie loved these cupcakes, it was a strategy that seemed to work! His smile said it all!



Quote of the day: Love is something eternal; the aspect may change, but not the essence. ~ Vincent Van Gogh


This morning, I received an interesting email. The email was from a friend of my mom's who thought my mom had just died. Truly seeing this first thing in the morning, freaked me out. She did not explain how she learned this but wanted to reach out to me. Literally when I first read the message, I thought perhaps this was some sort of fraudulent message. But I checked and double checked and then wrote back to this friend. She did respond back to me and I wanted to find out if some sort of message was going around on social media. Turns out that wasn't the case, but naturally I wish to get down to the bottom of this, as such a rumor to me is disturbing. It is an interesting way to start the day.

It was a hard day, and I did non-stop clean up for my dad. When I entered their bedroom this morning, the smell hit me before anything else. I wish that was where it ended, but I dealt with this numerous times today. As hard as caregiving is, this pales in comparison to the other issues in my life. 

The highlight of my day was what greeted me on my doorstep! This wonderful gift of chocolate covered strawberries and treats is a reminder that I am LOVED. 




February 12, 2025

Wednesday, February 12, 2025

Wednesday, February 12, 2025

Tonight's picture was taken in February of 2009. That year, we must have purchased every Lego kit on the market. Those we did not purchase, were gifted to us. We put together small, medium, and big Lego structures! Legos were our therapy! While putting together these creations, our minds were focused on this happier task, and we took a break from cancer! I will never forget what vital diversions Legos provided us and how Mattie loved creating and building. After Mattie completed the assembly he then showed his nurses and his psychosocial team the finished products. Legos assisted Mattie and his care team in meaningful dialogue, and if they could talk about Legos, then it lead to other conversations about how he was feeling. However, there would have been NO medicine talk without first bonding over something else. Legos provided that safe outlet.  


Quote of the day: There is hope, even when your brain tells you there isn’t. ~ John Green


Last night, I went outside to try to get a jump on shoveling the driveway. Believe it or not, whatever I had done, was covered in snow minutes later. It was like trying to hold back the ocean. Nonetheless, I am glad I got the process started. I must have been outside for two hours. It was a white out and when I looked up the total accumulation for my city, it was over 8 inches. 
This was what I saw outside my front door! A sea of white. However, when I woke up this morning, I found the roads had been plowed (which was amazing, as this isn't always the case) and my neighbor was already working on my driveway with his snow blower. He's a kind soul and he also knows I am paranoid about falling on the ice, since I do it frequently. So after he used his snowblower, he then shoveled by hand to remove all snow from the driveway and walkways. Truly a blessing!

I have to admit that I was tired from shoveling the night before, so having someone help me, it greatly appreciated. On top of caregiving, I roasted a six pound chicken. This has become my tradition, if we are stuck at home because of snow, I want dinner to be special. While prepping the bird, I received an email from my mom's car dealer. Her car is in for service. Why? NOT because it was a scheduled service (which it had in December), but because when I started the car, a nasty gram popped up on the screen telling me the car's battery was low. Don't ask me how the car could get fully checked out in December, and now the whole battery required replacement. This particular car dealership is a nightmare. They are a complete night and day experience from my Ford dealer. 

Any case, today's message was that I had until 9am on Friday to return the loaner car! Mind you I brought my mom's car in last Wednesday. It isn't my fault that they delayed servicing the car until today! I did not appreciate the tone of the email I received and rest assured, when I arrive at the dealership tomorrow, I will be speaking to a manager. I will spare you the formal complaint I filed on this dealership in December of 2024. Servicing the cars was never my job while married, but what I do know is I am not going to now get pushed around because I am a woman.  

In order to be able to drive the car tomorrow, I had to clean all the snow off the car! That literally took me two hours, as 8 inches of snow is a lot to deal with and some of it had turned to ice! Of course once the car was cleaned off, then there was snow all over the driveway, which required more shoveling! Needless to say, my plan was to do Foundation work today, and once again, I was consumed by endless chores. 

Dinner consisted of a wonderful roast, which I had to carve, sweet potatoes, fresh cranberry sauce (yes I freeze cranberries throughout the year!), and I sauteed asparagus. After dinner was finished, my mom asked my dad..... what did you eat? His response was..... cut up bananas. All I can say is my dad is lucky to have me, because given his cognitive issues, he is highly vulnerable. 

February 11, 2025

Tuesday, February 11, 2025

Tuesday, February 11, 2025 -- Mattie died 781 weeks ago today. 

Tonight's picture was taken in February of 2009. We were in the child life playroom at the hospital and that day, Mattie was constructing a volcano. A favorite past time of Mattie's, mainly because he loved hands on activities and particularly was fascinated by the lava type reaction he could produce! The limb salvaging surgeries Mattie had to remove bone tumors limited his range of motion with his arms. He literally could not lift his arms very high, and forget about trying to reach over his head. Naturally this was very frustrating for a six year old, but Mattie had great determination. If he wanted to do something, he found a way! 


Quote of the day: Loneliness doesn’t come from being alone, but from being surrounded by people who can’t understand you. A deep feeling of isolation comes when you realize that even the person standing right next to you is unreachable. ~ Anonymous 


It was an early morning in my household, because I had to get both of my parents to their primary care doctor for their annual physicals. In order to get to a 10am appointment, I got up at 5:45am. That is how much time I needed to allot to make this happen. At some point, today, all I wanted to do was put my head down on a pillow. I am very aware of the fact that I fell on my hip on Saturday outside my side door, I have a big black and blue on my hip, and yet I have to mentally put that somewhere and continue plugging away. Fortunately I am very good at blocking out pain. 

With each appointment, the doctor assesses my parents memory and does this with a brief cognitive test. I always find these tests amusing because I have heard them so often, I know all the questions! My dad is holding steady and hasn't had much of a decline since his last visit a few months ago. Of course, my dad had no idea what day it was, what month we are in, what year it is, and so forth. My mom thought we were in April! Wouldn't that be nice, that would mean trees were leaving out and spring had sprung! 

Overall, my parents are holding their own. Typically their doctor likes his older patients monitored each day with blood pressure and oxygen levels, but he understands why I am NOT going to do this, and he also understands that I monitor my parents visually VERY closely. So I would like to take some credit for their stability. 

Currently we are in the middle of a snow storm. I can't tell you how much this freaks me out! I am NOT a snow person to begin with, but being the only capable adult in my household, managing everything and my parents seems even more daunting in a snow storm. I don't care how crazy I look, I will be out there shoveling snow several times tonight, in order to get a jump on the accumulation. Overall however, the isolation that caregiving, being divorced, and a snow storm produces feels beyond overwhelming right now. 


I received two beautiful cards in the mail today from friends. I can't tell you how much these cards meant, it almost was like a lifeline reminding me that I matter. 


February 10, 2025

Monday, February 10, 2025

Monday, February 10, 2025

Tonight's picture was taken in February of 2009. I remember this moment in time, like it were yesterday! Pictured with me and Mattie, was Jenny. Jenny was one of Mattie's extraordinary art therapists. I was introduced to Jenny in week one of Mattie's care at the hospital and frankly neither Mattie nor I would have made it without her presence in our life. That day, Mattie was getting admitted to the hospital, however, his admission occurred through the out-patient clinic. Jenny was escorting us to the clinic but on the way Mattie wanted his wheelchair to go flying down the ramp in front of us. Naturally there was NO WAY I was going to let go of his wheelchair, but we wanted to give Mattie that feeling of freedom and zooming down a hill. So we ran down the ramp, holding onto his chair!!! We were such a sight that you can see the woman behind us was watching and smiling! Mattie's care team always helped us create "normal," non-cancerous moment, which have now become part of Mattie's legacy. 


Quote of the day: It is an absolute human certainty that no one can know his own beauty or perceive a sense of his own worth until it has been reflected back to him in the mirror of another loving, caring human being. John Joseph Powell


Today this article, ASU researchers propose a unifying explanation for molecular chaos driving Alzheimer's disease, popped up in my news feed. No surprise as I am always looking into the latest research and findings on Alzheimer's disease. Caring for someone with a progressive cognitive disease is actually very challenging and it requires inordinate patience and compassion. Not to mention energy. It is hard to believe, that in the age of modern medicine, there is still no drugs on the market to stop the progression or cure the disease. I am not sure why this surprises me, considering the lack of attention and effective medications to treat childhood cancer. In so many ways our society has failed our young and our older adults with chronic diseases. 

This study highlights 'stress granules,' which are structures that form temporarily in response to cell stress, helping to pause nonessential processes while the cell recovers. Normally, they protect the cell during stressful conditions and dissolve once the stress subsides.

In Alzheimer's disease, however, these granules persist abnormally and become chronic and pathological, trapping vital molecules and hampering their movements into and out of the cell nucleus. Instead of providing protection, they cause harm and contribute to the disease's progression.

What I love about this study is researchers have uncovered a transformative new approach to a possible intervention. If the formation of these stress granules can be altered this could have ramifications on halting or delaying the onset of symptoms. That would be miraculous because we certainly know very little can assist an Alzheimer's patient who is actually symptomatic and has both brain amyloid plaques (which are clumps of misfolded proteins that accumulate between neurons and disrupt cell communication) and tau tangles (twisted fibers of a protein that build up inside neurons, impairing their function and ultimately leading to cell death).

Did you know that there are currently 6.9 million Americans and 55 million people worldwide living with Alzheimer’s? Alzheimer’s is the most expensive disease in the United States. Its annual raw expense is more than $270 billion, but the toll it takes on patients and caregivers alike is incalculable. A substantial reason that Alzheimer’s doesn’t cost more is thanks to over 16 million unpaid caregivers who have taken on managing their loved one’s disease. That’s more than 17 billion hours of unpaid care for family and friends with Alzheimer’s.


Here are some interesting facts from the Alzheimer's Association:

  • Each year, a family spends, on average, more than $10,000 to pay the out-of-pocket health and long-term care costs of a senior with Alzheimer’s or another dementia. This is more than four times greater than the average annual out-of-pocket costs of seniors without dementia. 
  • In the last five years of the life of a person with dementia, family out-of-pocket health care spending totals nearly $87,000 — more than twice as high as for a person with cancer and nearly 75% higher than for a person with heart disease.
  • More than half of caregivers report high or very high levels of emotional stress, and more than 1 in 3 report high or very high levels of physical stress. 
  • One in 5 care contributors cuts back on his or her own doctor visits, and 1 in 9 do not always buy the medications needed for themselves. 
  • Among Alzheimer’s caregivers, 74% report they are somewhat to very concerned about maintaining their own health since becoming a caregiver. 
  • More than 1 in 3 Alzheimer’s caregivers say their health has gotten worse due to their care responsibilities — compared with only 19% of nondementia caregivers.