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

November 21, 2020

Saturday, November 21, 2020

Saturday, November 21, 2020

Tonight's picture was taken on November 18, 2008. This was 5 days after Mattie's major limb salvaging surgery. As you can see, he was still wrapped up like a mummy, but he was more alert and pain was better managed by that point. But that was only after A LOT of advocating and sometimes screaming on our behalf! Despite the pain, undergoing a significant surgery, managing life with cancer, and being isolated in a hospital room..... Mattie's spirit still came shining through!


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

  • number of people diagnosed with the virus: 12,059,686
  • number of people who died from the virus: 255,800

What a difference a day makes. Not to mention rescue migraine medication. I was an absolute mess yesterday afternoon and evening. I couldn't function or SIT STILL. I felt miserable, as if I were going to jump out of my skin. My head was pounding, and the nausea was intense. 

Peter sent me some photos on his drive to Boston to visit his parents. Of Sunny and Indie were in tow. 

The glorious GW Bridge!

Sunny loves backyard time. It is like going to summer camp. As you can see Sunny was glued to the door, checking out the backyard. Next to Sunny is OC, the cat. Though it is OC's home, he tolerates Sunny. Sunny is used to cats and knows not to make any sudden or aggressive movements.
Sunny loves being outdoors! When we take Sunny to Boston, we bring a LONG leash with us. This enables Sunny to walk around and check things out without getting into trouble. 
Sunny is very focused on the movement in the backyard. Chipmunks and squirrels always catch his undivided attention. 



















Today I went grocery shopping for Thanksgiving. My dad likes getting the turkey from Gelson's. Gelson's is a very unique and extraordinary grocery store. It has special items like what one would find at Whole Foods, yet you can also find every day brand named items in the store. So unlike with Whole Foods, you can do ALL your shopping at Gelson's. What makes Gelson's a beautiful shopping experience though are the well trained, customer focused staff members! At Gelson's the customer is always right, and they work very hard at getting their shoppers happy. I love food, and it is clear who ever manages this store, appreciates food and wants to make the store a visually pleasing experience. It doesn't disappoint. 

I went to high school in California. Just down the street from Gelson's. So Gelson's is NOT new to me. I remember my maternal grandmother LOVED Gelson's and I would take her shopping there on occasion. 

In reality I was dreading going shopping today because I was expecting anxious and pushy shoppers around me preparing for Thanksgiving. I found the exact opposite. I attribute this to a well run staff who keep shelves stocked, well organized and NO one waits at check out. If a line develops, more checkers appear instantly to help customers. Why aren't all grocery stores like Gelson's!???

Gelson's has it all! From an amazing butchery to a delectable bakery. Because my parent's moved into their house in June, I admit that I am not familiar with the size of their refrigerator or their oven. Both of which are smaller than their past appliances. 

It was productive day and I got a lot done. It most definitely helps that my dad has a caregiver for four hours each day. It frees me up to run chores and get tasks done. 

November 20, 2020

Friday, November 20, 2020

Friday, November 20, 2020

Tonight's picture was taken on November 13, 2008. It was the day after Mattie's second big limb salvaging surgery. During that 12+ hour surgery, Mattie's left arm, right leg, and left wrist were operated on. Prosthetics placed in two places and a bone graft at the wrist. What Mattie's surgeries proved to me was that the surgery was the easy part. The hard part was the aftermath! Trying to manage pain and to eventually regain strength and abilities were where the heroic feat came into play. This photo may look peaceful. But I assure you the room was anything BUT peaceful. Mattie was coping with tremendous pain, he was hooked up to IVs and had drains coming out of each operated limb. Making it thoroughly impossible to move and get comfortable. 


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

  • number of people diagnosed with the virus: 11,895,876
  • number of people who died from the virus: 254,297


I developed a HORRIBLE migraine this afternoon, so I unable to truly look at the computer screen and write much tonight. So this will be short. I got up this morning at 5:30am and ran one chore after the other, just to find a flood going on in my parent's laundry room. There just is NO break with this house. It is hard enough balancing this schedule, but it is close to impossible with a horrific migraine. I am hoping that this feeling passes in 24 hours, as I can work through headaches, but not this level of debilitating symptoms. 



November 19, 2020

Thursday, November 19, 2020

Thursday, November 19, 2020

Tonight's picture was taken on November 12, 2008. It had to be around 5am, and we were in the pre-op area waiting for Mattie to be taken back for his second limb salvaging surgery. That was quite the day! Imagine such a little body undergoing 12 hour surgery. In any case, we were all stressed out and anxious that morning, yet we tried the best that we could to keep Mattie calm, and to reassure him we were in this together. 


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

  • number of people diagnosed with the virus: 11,698,661
  • number of people who died from the virus: 252,419




Look who has taken over my side of the bed!!! Sunny and Indie!







In case Peter is lonely, Sunny is on the job. 









My dad had physical therapy today. One of the exercises Jon did with my dad, was walking with a cane up their street. If you look closer, you will notice 3 pound weighs around my dad's ankles. Jon is doing this to help my dad build up muscle. It took 10 minutes for my dad to walk up the street and 10 more minutes to walk back down. My dad had an entourage with him, as my mom, me, and Claudia (his caregiver) were behind him. We had a wheelchair in tow, just in case my dad did not have the energy to make it back. 






Before I came to LA, we purchased an aeromattress for my mom. I set it up in their guest room yesterday. While I am here, I want my mom to stay in the guest room, so that she can sleep without worrying about getting up with my dad and can sleep later in the morning. I am here and can manage caregivers and other issues that arise in the morning. My mom looks more rested this morning. So I do think two weeks of getting sleep will do a world of wonders for her. 


Meanwhile, I met my dad's wound care specialist today. Wound specialists are health care professionals who have been trained in the care and treatment of all types of wounds, acute and chronic. Among the most commonly treated wounds are those sustained from an acute injury, surgical wounds, diabetic wounds and pressure sores. This is the third specialist assigned to my dad. We lost his first two because of patient demand and timing did not work out for us. So we were assigned Ken (Ken is NOT his real name, I won't use his real name for the blog).

In May, my dad developed a pressure sore on the lower part of his spine. We were told by the first wound care specialist that my dad got this sore from being sedentary during COVID and being malnourished (as my dad refused to eat while in lock down at home). Though my parents have been working with Ken for a couple of weeks, it was my first introduction to him today! To cut to the chase, it was NOT a good meeting and while he was working with my dad, I picked up my cell phone and called the in-home health care agency. On the spot I fired the wound care specialist. I demanded a replacement effective immediately. He was that bad! I did not need anymore time to assess him, his personality, or his poor skills. Turns out that my mom hasn't liked working with this specialist, and she said his behavior today was typical of how his overall delivery of care.

When incensed, I write. I wrote an email to the wound care company, because I felt their management needed to hear directly from the patient's family! Below is my message, and it is my hope you can understand why Ken's treatment was not satisfactory!


MY LETTER:

My dad is a client of T. Home Care. He has been dealing with a wound on his lower spine since May. Recently, my dad was assigned to work with Ken, a wound care specialist from your company. I live out of town, so today was the first time I met Ken personally. I introduced myself to Ken and I could tell right away this was not going to be a good visit. Given our experience with Ken, not just today, but from feedback I received from my mom, I called T. Home Care and asked that Ken NOT return. I have asked for my dad to be reassigned a new specialist immediately. 


Here are some of our experiences today that caused the decision to request a new wound care specialist:

  1. When Ken arrived, I introduced myself to him, as Mauro Sardi's daughter. He did not say hello or make any effort to communicate with me. 
  2. Ken also made no effort to greet my mom, my dad's full-time caregiver. It was clear that Ken doesn't value family input and doesn't consider us part of the treatment team. Which is a BIG mistake, as family caregivers know the patient better than anyone else. 
  3. After I greeted Ken, he turned his back to me, and instead started talking to my dad's professional caregiver. Ken apparently lost a blue bag of his and wanted to know if he left it at my parent's house. Since our caregiver doesn't live in my parent's home, it would have made more sense to inquire about the bag from my mom or me. 
  4. The bigger issue arose when I started asking Ken about my dad's back wound. He wasn't forth coming with any responses.
  5. When I saw the wound for myself (after Ken removed the bandage), I was stunned to see NO progress in healing. I last saw it in person in August, but my dad's caregivers send me photos weekly. Under Ken's care, I feel that my dad has made little to no progress. In fact, the wound looks worse. When I expressed my feelings with Ken, he basically said I was wrong and that I am not around enough to make this determination. Which is very insulting, given the efforts I do make to ensure my dad is getting the best quality of care possible. 

I appreciate the opportunity to share this feedback with you and I am telling you this because I do not want other patients and families to experience with Ken what we did today. Much thanks, Victoria

November 18, 2020

Wednesday, November 18, 2020

Wednesday, November 18, 2020

Tonight's picture was taken on November 10, 2008. Mattie was in the outpatient clinic and as you can see he had worked on the computer there and was printing off images of roaches. Why? Well Mattie was into bugs of all kinds and he particularly loved seeing me freak out over the discussion or photographs of roaches. Ironically, Mattie claimed to love roaches, but he never saw one in real life. Nonetheless, whatever got Mattie excited, happy, and laughing, I supported! Also notice that on top of Mattie's hat was a model magic roach that he created! That roach is still on display in Mattie's bedroom. 


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

  • number of people diagnosed with the virus: 11,517,455
  • number of people who died from the virus: 250,426



My boy is NOT happy that I left this morning. As you can see, Sunny jumped on the bed and remained on my side for a chunk of the day. Doesn't he look depressed?
On my flight today was a couple with their new puppy, a Westie, named Sky. Sky was a good girl and managed the 5.5 hour flight! 

I can't recall the last time I was on such a smooth flight! I mean no turbulence at all. It was thoroughly pleasant to sit still for this time, read a book, and prepare for my trip ahead. 

My view as we were flying into Los Angeles! 
We arrived an hour early! This is a typical sight in LA in the morning, overcast and grey. I left upper 30 degree weather and enjoyed sun and 70 degree temperatures in Los Angeles. Needless to say, I got up at 4am to catch my 7am flight and when I got to LA, I have been working non-stop. My dad claims to be getting stronger, but what I have concluded is we have different definitions of stronger. Stronger to me means becoming more independent. The sad part is this is not going to happen, and it is an adjustment and loss for me and my mom. In fact my dad doesn't remember living independently back in May! He thinks it was a much longer time ago. 
Peter received a surprise in the mail today!











Congratulations Peter!





November 17, 2020

Tuesday, November 17, 2020

Tuesday, November 17, 2020 -- Mattie died 581 weeks ago today.

Tonight's picture was taken in November of 2003. Mattie and I were in the kitchen dancing. Peter came in and snapped a photo of us in action. Got to love the big smile on Mattie's face! One thing was for sure about Mattie.... he loved music and movement right from the beginning. 


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

  • number of people diagnosed with the virus: 11,299,730
  • number of people who died from the virus: 248,027


Pictured here are Katie (Child Life Coordinator) and Christine (Hospital Educator). Both of these women work at MedStar Georgetown University Hospital. Mattie Miracle made a donation of candy and snack items, items which will keep our FREE snack and item carts stocked! 

Behind Katie and Christine is a sight I will never forget. These buildings belong to the medical school, and many a day, I wheeled Mattie around them and the garden just to get some fresh air from the hospital unit. It seems ironic, that even a picture of this outdoor space can transport me back in time.   

Even during a Pandemic, I would say that our supporters really stepped up once again to help us. In December, we will be making a delivery to Children's Hospital at Sinai in Baltimore. We have an equivalent size of items to donate. 




Occasionally it is good to reflect on where the Foundation was and where it is today! A great way to do this is reading our newsletters. This is what our January 2014 Newsletter looked like! Besides content, the whole layout of the newsletter was more simplistic. 

Meanwhile, our November 2020 Newsletter came out this week. This is, I believe, the fourth format we developed for our Newsletter templates. Though I complained about having to develop a new template two months ago (because the company we use migrated platforms), I think the new style is crisp, much easier to read, and definitely highlights our activities and achievements. 




November 16, 2020

Monday, November 16, 2020

Monday, November 16, 2020

Tonight's picture was taken in November of 2005. That weekend we took Mattie to the National Geographic Museum. Ironically that was my first and last visit to that Museum. For no reason, other than it was a museum and adventure that reminded me of Mattie. Outside the Museum are wonderful bronze animal sculptures. As you see Mattie liked this ape! It still is one of my favorite photos. I can remember snapping this photo and trying to capture Mattie's big smile on camera.  


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

  • number of people diagnosed with the virus: 11,163,990
  • number of people who died from the virus: 246,953


It was a busy day today. With one chore or task after the other. I am leaving for Los Angeles on Wednesday, and desperately trying to get work done. Midday, I took a break, and Sunny was thrilled to walk Roosevelt Island with me. I could walk Sunny near my home in DC, but frankly, the state of the city causes me to want to LEAVE and seek a retreat. The Island provides that for me. 

It was a lovely weather day and the deer were out all over the Island. I feel like I see these deer so often, that they should be used to us. 

Do you see the deer in the brush? This one was walking across the water during low tide to get from one side of the Island to another. This deer caught the attention of many humans on the boardwalk today. 
This duo I see often. Mom and baby! Do you see them? Mom is on the right and baby on the left!


November 15, 2020

Sunday, November 15, 2020

Sunday, November 15, 2020

Tonight's picture was taken in November of 2005. Mattie was three years old and that weekend we took him to Great Falls Park. Mattie loved all outdoor adventures and got me in the habit of taking long walks on the weekend. I think Mattie would have loved meeting Sunny, because they share their love for walking and the outdoors. 


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

  • number of people diagnosed with the virus: 11,000,984
  • number of people who died from the virus: 246,006



Yesterday we went through all the candy and snack items that were donated to the Foundation. The majority of snacks were shipped to us from our Amazon wish list and the majority of candy was dropped off at our location in Arlington, VA. For the most part all the candy we received was in its requested unopened vacuum sealed bags. We did receive some loose candy and it is being donated to shelters and other non-profits. 

This stack of bins will be headed to Children's Hospital at Sinai in Baltimore, MD in December. 

This stack of boxes are all the snacks going to Children's Hospital at Sinai. Our supporters were SUPER generous with snacks this year. We received all sorts of goodies: oatmeal, chips, popcorn, cookies, nuts, granola bars, k-cups of coffee!
This is the other half of the supply we received. We stuffed it into our friend's minivan. Which is filled from floor to ceiling! All of this will be delivered to MedStar Georgetown University Hospital on Tuesday! Georgetown will be receiving several bins filled with candy and the rest are boxes upon boxes of snacks!


All these donations will help stock our free snack and item carts at two hospitals. These carts serve over 1,500 families a year! The items on the carts help meet the daily needs of families who are caring around the clock for a child with cancer or other life threatening illness. When in the hospital, it is hard for parents to leave their child's bedside to meet their own basic needs. The carts serve this important psychosocial role.