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

January 16, 2021

Saturday, January 16, 2021

Saturday, January 16, 2021

Tonight's picture was taken in December of 2006. Mattie was four years old and part of our family holiday tradition was to go to the US Botanical Gardens. They always had amazing festive flower displays and sculpted models of DC buildings out of plant materials. Mattie and I posed in front of the US Capitol! Peter and I haven't been back to the Gardens at Christmas time since Mattie died. 


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

  • Number of people diagnosed with the virus: 23,707,002
  • Number of people who died from the virus: 395,195

I got up at 4am this morning, in order to get showered, dressed, made my mom breakfast and then left for the airport at 5:30am. This as my take off photo out of LA! It was another glorious sunny day! 

Not only did I go through a metal detector at the airport, but I went through the 360 scan as well as a pat down! Then TSA also screened passengers a second time right before boarding the plane to DC. So I could feel the heightened security even before returning home. 
Beautiful from the air! I had the blessing of having NO ONE next to me. Which was nice because I really need 4.5 hours to unwind, rest, read, and be on my own time schedule. 
Classic DC! Grey and overcast. We get MORE grey days than anything else. 
Our home is surrounded by the National Guard, who each are carrying automatic weapons. Am I in the USA? 
Fencing everywhere!
Surrounded by military trucks and National Guard. 
Outside our bedroom window. Peter says its impossible to sleep at night with lights and noise!
A greeting from Miss Indie!
An anxious pooch! Wants to know what on earth happened to me!???

January 15, 2021

Friday, January 15, 2021

Friday, January 15, 2021

Tonight's picture was taken in December of 2006. Mattie was six year old and was posing in front of our Christmas tree. Each year that Mattie was alive, I featured a photo of him on the front of our family holiday cards. This was just one of the photos in a series I took that year. It wasn't the photo I selected for our card, but it is definitely one I love. It is hard to see, but our tree had many ornaments that Mattie handmade and I also had a holiday ornament for each family member who had died. 


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

  • Number of people diagnosed with the virus: 23,520,563
  • Number of people who died from the virus: 391,922

It was my last day in Los Angeles. I feel like California gave me a gift today of an 80 degree day. It was absolutely beautiful out. Though I did not spend much time outside, every afternoon around 4 or 4:30pm, my mom and I go out for a walk while my dad is resting. Typically it gets cooler at this hour, but not tonight. It felt like spring. Absolutely glorious. 




It was a very FULL day. I did about three loads of linens as I disassembled the spare bed my mom uses. She stays in the guest room when I am here because my goal is for her not to worry about my dad, but to sleep and wake up on her own time schedule. I did cognitive and physical therapy exercises with my dad, completed all paperwork my mom gave me, printed out and attached the alarm company emergency number to every telephone in the house, cooked a full meal, cleaned and did more cleaning, vacuumed, walked four miles with my mom, packed, and the list goes on! 

Today's linner.... Broiled Italian sausages, corn on the cob, string beans, sautéed mushrooms and peppers. My dad likes variety and he doesn't like left overs, so it means cooking..... and cooking all the time!

Perhaps I am just tired, but right now my outlook on just about everything is NOT positive. 












After dinner, my dad found this math quiz in a magazine he was looking at. He was getting frustrated and gave it to me. He wasn't just unable to complete it, but he did not even understand the concept of lining up numbers and adding them by column. This was truly shocking to me because my dad had an advanced accounting background. He understood numbers and how they related to each other. Given his cognitive decline, even what was once intuitive to him is now gone. 

January 14, 2021

Thursday, January 14, 2021

Thursday, January 14, 2021

Tonight's picture was taken in December of 2006. Mattie was four year old and I asked my boys to pose in front of our Christmas tree. They both had their Santa hats on and I loved the big hug Mattie was giving Peter!





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

  • Number of people diagnosed with the virus: 23,308,882
  • Number of people who died from the virus: 388,531

Today was a hellish day! It's NOT what I did, but what I didn't do! At one point, I was balancing the electrician, the alarm company rep, the owner of the house and his insurance agent, and a phone call with MetLife about long term care insurance ALL AT THE SAME TIME. Frankly at one point today I wanted to absolutely SCREAM! I am so so tired and the amount of work here is endless. I don't know why life here is SO frenetic, stressful, and debilitating. Not a minute's peace and though today was 80 degrees, I never sat outside to enjoy. There is just NO time. On top of everything else, I had to take my parents to the notary (which seems like our 4th or 5th visit to this person) and then took my dad's watch to the jeweler. He insisted the watch needed a battery! I kept telling him that nothing is wrong with his watch, he is just constantly adjusting it and therefore it never says the right date. I couldn't listen to the battery lament one more minute, so I had a professional look at the watch! The watch was fine and like I had said, he kept playing with the date so that when the watch was at the 12 position.... 12pm, became midnight and therefore the date moved to the next day. We corrected the issue! 

In the midst of this thoroughly chaotic day, I made lamb chops, asparagus, artichokes, baked potatoes, and a tomato salad for my dad. If I never see a kitchen again that will be too soon. But I couldn't even eat in peace as MetLife called the moment I sat down, and had to deal with them. Then when off the phone, my dad had to run to the bathroom. NO PEACE AT ALL! SIGNING OFF.....EXHAUSTED IN LA! 

January 13, 2021

Wednesday, January 13, 2021

Wednesday, January 13, 2021

Tonight's picture was taken in December of 2007. I remember snapping this photo because I absolutely loved Mattie's eclectic look! He had his Santa hat on, his duck boat  tour whistle in his mouth, Peter's baseball hat and one of his Peter's shoes on! Not to mention his sunglasses on, when he was inside with no sun around. The beauty and whimsy of Mattie. 






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

  • Number of people diagnosed with the virus: 23,053,424
  • Number of people who died from the virus: 384,343

Another busy day in 'paradise.' It is amazing what I accomplish in one day! It may seem like I can work these long days without consequences, but I have to admit I am tired. I started prepping linner at 7:30am. If I don't, it will be impossible for me to serve a full meal by 1pm. I say that because by 8am, I am juggling caregivers, health care visits, phone calls, and the list goes on. 

This morning a representative from the alarm company came over. I walked through the entire house and property with her, and then for two hours we went through options. I learned about "glass breaks" today! Which are very needed as my parent's house has floor to ceiling windows. 

Glass break detectors complement door and window sensors by monitoring sound or vibration. ... When they detect the frequency or shock waves associated with glass shattering, they sound an alarm.

The alarm person loved how pro-active I was being and especially loved the bicycle lock I recently installed on a gate near my parent's house! Together she and I went around the property placing alarm yard signs and other signage. I like their new service we signed up for because it involves access to armed patrol and response 24/7. 


In between all sorts of tasks, I wanted to share a photo of my upside down pineapple cake. It turns out to be delicious and it is super easy!
One of the things I made today was pasta with a caramelized onion sauce. This sauce takes about three hours to cook, as it takes a while for onions to cook property. But the recipe is delicious and it reminds me of my maternal grandmother, who used to make this dish for us all the time. 

While eating dinner, all three of us were chatting. My dad used to LOVE LOVE LOVE going grocery shopping. Now (putting COVID aside), he has NO interest in going into a store. Tonight I asked him why? His response was.... "I'm disabled!" This type of labeling drives me batty because in all reality my dad is physically strong and though he uses a walker and needs assistance at times, he can ambulate. I feel like I have to constantly remind him NOT to view himself in such a negative manner. With that said, he has this view on one hand, and on the other hand he was telling me and his caregiver that he worries about his current house when he goes overseas! Or when he comes to visit me in DC! All of this points to his cognitive impairment, as he has no insight at all that he is no longer able to travel independently much less function on a daily basis without his caregiver. 

So I have that dynamic to balance as well as the emotions my mom feels about my dad's decline and her discomfort with having strangers coming and going in her house all day! It is very difficult being a caregiver 24/7, with no relief or break in sight. I honestly do not know what the solution is given that I am 2,500 miles away. As it is, I am here every other month, and until this trip, I thought I was being helpful. However, as more time goes by, I notice that my mom is progressively more and more exhausted and therefore, even my visits every other month don't seem to be cutting it. 

January 12, 2021

Tuesday, January 12, 2021


Tuesday, January 12, 2021 -- Mattie died 589 weeks ago today.

Tonight's picture was taken in December of 2007. Mattie was five years old and that evening we took him to Brookside Gardens. Their light display was wonderful and it involved walking through the Gardens, which Mattie loved. Despite that it was freezing, it was a real adventure and one I will never forget. 


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

  • Number of people diagnosed with the virus: 22,832,420
  • Number of people who died from the virus: 380,540

 

Given all that I juggle each day, I find that setting up linner (lunch/dinner) at 7:30am is my best time. Mainly because by 8am, my dad's caregiver arrives and from that point on until noon, I am working to manage her as well as helping my dad with his cognitive and physical therapy exercise. 

This morning, I put together a mini-Thanksgiving dinner. I have to admit the last time I ate a turkey drumstick was when I was a child! Whenever I have cooked a turkey, I always reserve the legs for my guests. 

This morning was a thorough show! I am trying to process through all the paperwork my mom gave me. The problem is most of the phone calls I need to make regarding these documents involve having my dad on the phone. Which means that he has to be cognitively sharp to do this, so we are talking 8am to noon. After noon, my dad gets tired and by 3pm, he is fogged out. I truly do not like making these personal type calls with my dad's caregiver present, but I have no other choice. The first call was about insurance and literally I was in the que, waiting for 60 minutes until a representative got on the phone. By that time, I was ready to scream. Mind you after waiting for 60 minutes, the representative couldn't even answer any of my questions! That always instills confidence! 

After that call, I then called my parent's alarm company and spoke to them about enhancing their service with nightly patrols. A representative from the company is coming over tomorrow morning to talk with us about this service. Given my intruder experience on Saturday, I am working the problem the best I can. 

This afternoon, I installed a bicycle type lock on this city gate. As the intruder walked along the LA River, and opened this gate and helped himself in. 
This evening, after cleaning up linner, I baked an upside down cake, and then went for a walk with my mom. These walks are necessary for our mental sanity. While walking we noticed this big green ball of leaves in a sycamore tree. After doing some research, I learned this was a drey! I never heard of a drey before. A drey is the nest of a tree squirrel or a flying squirrel. Dreys are usually built of twigs, dry leaves, and grass, and typically assembled in the forks of a tall tree. 

January 11, 2021

Monday, January 11, 2021

Monday, January 11, 2021

Tonight's picture was taken in December of 2007. Mattie was five years old and it was the last "normal" Christmas we had together. It is hard to believe that a year later, Mattie was diagnosed with cancer. That evening we took Mattie down to the National Mall to see the Nation's Christmas tree. It was a family tradition, and I am so glad we made the time to do these things and to take plenty of photos. 





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

  • Number of people diagnosed with the virus: 22,612,384
  • Number of people who died from the virus: 376,051

It was another crazy day in "paradise." My mom and my dad had doctor appointments today. Two different doctors, at the same time. So I dropped my mom off at the doctor and then drove my dad and the caregiver to his doctor appointment. Fortunately my mom's doctor isn't far away from her home, so she could walk back to the house once she was done. 

While waiting for the doctor to come in to examine my dad, my dad's caregiver asked me in front of him whether he has a DNR ("Do Not Resuscitate"). HONESTLY!!! I can't think of a more insensitive and out of touch question and conversation! This is the same caregiver who had me cleaning the inside of trash cans and cleaning windows! I feel it it important to put her personality into context. Because at times you just want to throttle her. In any case, because she was persistent, I said NO my dad doesn't have a DNR! However, I am my dad's medical power of attorney and therefore know his wishes and can execute on them. She did not like this answer and kept at me about a DNR. It got worse, she then proceeded to tell me what a DNR is! 

That I did not crown her on the head right then and there was a feat. Peter and I absolutely know what a DNR is, as Peter had to complete one for Mattie. So YES I KNOW WHAT A DNR is!!! Clearly my dad was listening to all of this, and I sensed his anxiety. Therefore, I said my dad is in a much better place physically and the need for a DNR is NOT needed. 

But specifically my dad's medical power of attorney documents his "choice not to prolong life"............................

I do not want my life to be prolonged if (1) I have an incurable and irreversible condition that will result in my death within a relatively short time, (2) I become unconscious and, to a reasonable degree of medical certainty, I will not regain conscious (3) the likely risks and burdens of treatment would outweigh the expected benefits

After the doctor's appointment, I dropped my dad and his caregiver back home and I went to the grocery store. I always feel like I am playing beat the clock and the caregiver leaves at noon, and anything outside the house has to be done before that point. Not easy, as we are involved in cognitive brain games and PT exercises altogether. 

On top of everything else, I also balanced a visit from an electrician to address the installation of security motion sensor lights and the exterminator to address the rat issue outside. Cooked another big meal, served it, cleaned it up and  managed my dad's bathroom issues from irritable bowel syndrome. When I tell you I never sit still I am not kidding. There is no peace and day in and day out of this produces a very bad quality of life for me and my mom.

January 10, 2021

Sunday, January 10, 2021

Sunday, January 10, 2021

Tonight's picture was taken in December of 2007. That evening we took Mattie to Peter's office holiday party. The husband of one of the founder's of the company looked just like Santa. Mattie got a kick out of this fellow and as you can see I snapped a photo of them together. Mattie had a great time at the party and even got to pick a gift from the company's grab bag! I will never forget the gift as it was a light up ceramic gingerbread house. 





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

  • Number of people diagnosed with the virus: 22,300,696
  • Number of people who died from the virus: 373,669

Given yesterday evening's intruder on the property, I went to investigate the area this morning. I took this photo from my parent's front door. You will notice straight ahead a wooden gate door opened by the driveway. We installed a lock on that gate door.
When you open the wooden door, you will begin to see city of Los Angeles property and the LA River. It isn't like a typical river that we think of. Instead, the LA River looks like a catch basin for rain water. So most of the time it is dry, expect during rain storms, and then it can be raging. 
Once you walk through the gate, you can see big buildings across the way. This is NBC and Universal. So across from the LA River, there is a lot of security 24 by 7. 
After walking through the gate, if you make a left turn, you see this. This is where I found the intruder trying to scale the wall. 












The owner of my parent's house says no one ever comes back there! That this was an isolated incident. WRONG! This morning, I found graffiti on the wall to the right of the tree (see it in purple) and beer bottles and other garbage which I picked up and disposed of. 




If you walk through the gate and turn right, this is what you see. 
After turning right, I kept walking and found this tall metal gate open. So it would be easy to walk along the river and land up at my parent's house. Keep in mind that this is all parallel to my parent's driveway. 
Needless to say, I closed the gate and am working on getting a lock for this gate. There is barbed wire on top of the fence and gate, so I think if the gate is locked, that would be an extra layer of protection. 

The area where my parent's live is filled with giant sycamore trees.  These are very messy trees, constantly dropping leaves! But last night these leaves signaled to me that someone was there. As you walk on them, they make a loud crunching sound. 
I had a request today for beef stew. A very labor intensive recipe, and not a great match for my busy day. 
The same caregiver who told me to clean out the inside of trash cans last week, started on me about the windows. It is true the windows were a mess and the garden has many spiders who spin webs all over the place outside. So today, I took it upon myself to clean the windows. I know it is hard to tell from this photo, but the windows are now crystal clean. 
The windows in the kitchen are now clean too. It is truly laughable that I added this to my already very full list of things to do!