Mattie Miracle 2021 Walk was a $125,000 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 2, 2021

Saturday, January 2, 2021

Saturday, January 2, 2021

Tonight's picture was taken in December of 2008. Mattie was home for Christmas and was visited by my friend's cousin, aka SANTA. Santa brought presents and great cheer! Which unfortunately was short lived. By that point in time Mattie was dealing with depression, anxiety, and medical trauma. Truly I did not understand how the hospital could release us when Mattie was dealing with profound pain, psychological trauma, and adjusting to his disabilities. Time may have passed but the feelings of hopelessness and chaos immediately come right back just by seeing this photo. 



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

  • Number of people diagnosed with the virus: 20,396,243
  • Number of people who died from the virus: 349,933

After my dad's caregiver left today, we got into the car and drove to the notary. I was determined to get estate planning and durable power of attorney paper work in order. After two hours at the notary, YES TWO HOURS!!!!, we got it all done. There were many legal documents that needed to be notarized, and the person working with us, was edgy! I can assure you I AM IN NO MOOD for edgy! I literally snapped this person's head off. He pushed right back and I said, 'we are bringing you business, and I don't appreciate the attitude.' Basically he was giving me a hard time because he thought the documents were unclear. THEY ARE VERY CLEAR, he just did not want to take my guidance on what part of the documents needed to be notarized. We eventually had a meeting of the minds, but what I have noticed is with the day to day pace I am keeping, I have a very short fuse. I also find it particularly interesting that those around me have NO EMPATHY for what I am doing and managing. Also TIP OF THE DAY..... once a document is notarized and stapled, it CAN'T be unstapled in order to make a copy of it. An unstapled notarized document is considered null and void. LOVELY!

On New Year's Day, I cooked a mini-Thanksgiving type dinner for my parents. Instead of a turkey, I cooked a roasting chicken. My dad's favorite is the stuffing. He literally can eat an entire casserole dish all by himself. Needless to say, he is eating very well, which is good to see. 
Each evening, after I clean up dinner plates, and help my dad into his big reclining chair, my mom and I go out for a walk. We really need the fresh air, after a long day of caregiving and chores. I have been enjoying the holiday lights. It perks both of us up. I have tried to get my dad in the car to see the lights, he refuses to go. 
Can you see Santa in the tree? I love the reindeer too. 
This may not look bad in the picture, but in real life, it looks like a landing strip! As the lights flash. 
Simply elegant!
This house got to me! Every part of the house and lawn was lit up! I would love to see the electric bill from this. Nonetheless, there is so much going on, you can't help but be intrigued and smile. 
This is the same house shown above. Except it is the whole property! You can see these lights from blocks away!
Pretty in purple. 
Peter sent me this photo! Indie is the first cat I have owned who insists on getting her water from the bathroom sink!
When Peter opened up his parent's door today, he saw this! Well actually Sunny saw the deer first and was like a kid at Christmas. Very excited and barking up a storm. 
As Peter is visiting his parents, he sent me some photos of Mattie that are in their photo albums. 
I believe this was Christmas 2005, it snowed and we took Mattie sledding in Peter's parents front yard. 
Christmas past in Boston. 
I have no idea where this was, other than a museum! Peter did take Mattie to Boston one or two times with me, and I am sure this was one of those times. 
The beauty of Mattie! I haven't seen these photos in years, so in some ways it is like seeing them for the first time. 
Christmas with Mattie. 


January 1, 2021

Friday, January 1, 2021

Friday, January 1, 2021

Tonight's picture was taken in December of 2008. A colleague of mine is a quilter, and she sent Mattie this amazing quilt for Christmas. One of Mattie's babysitters called Mattie "Super Mattie," even before he was diagnosed with cancer. That name stuck and I used it on occasion when I wrote the blog. Certainly when Emily would write to us, she always used the phrase, "Super Mattie." Clearly this name caught on and it was a complete surprise when we received this gift in the mail. 




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

  • Number of people diagnosed with the virus: 20,085,408
  • Number of people who died from the virus: 347,202

Given that today is a holiday and because I am here in Los Angeles, I believe my dad's caregivers believe they have more flexibility. The caregiver who was supposed to come today, told me on Wednesday she wasn't coming. Fortunately I asked her, because otherwise this would have been a big New Year's surprise.

I got up at 6am, and showered, dressed and began my day.  I started the first load of laundry as my dad had an irritable bowel syndrome accident last night. I then made breakfast, and cleaned and marinated a 5 pound chicken for today's linner. I got my dad up at 8am, helped him shower, dress, and get downstairs. He and I had breakfast together and we even connected with Peter by phone. My dad keeps asking about Peter, so I figured it is best to hear directly from Peter for an update. 

We got a lot accomplished as I have been determined to get my parents to sign durable power of attorney forms. Otherwise, it is very hard for me to help them legally. I have been working with a lawyer since September and really wanted to start the New Year with all the documents in place. I have no joy in doing these documents, but I am adamant about being able to help my parents and at the moment I can't speak to any institutions without these formally notarized documents.

After all of this, we then did cognitive exercises, my dad's 20 minute walking routine, all his PT exercises and his occupational exercises. Ironically my dad asked what I was doing!? Clearly the caregivers are NOT doing the exact exercises that the PT and OT prescribed. Which I will have to address this week. It just never ends! 

Meanwhile, check out Sunny's New Year walk. He just looks so happy to me. 
My regal boy!
Sitting by the fire, enjoying his bone! A great New Year's treat. 


December 31, 2020

Thursday, December 31, 2020

Thursday, December 31, 2020

Tonight's picture was taken in December of 2008. That day Mattie received a visit from two Marines (distributing Toys for Tots) and his best friend, Zachary. Mattie and Zachary became instantaneous friends on the first day of preschool. They had a special chemistry and even though Zachary was used to actively playing with Mattie, once Mattie was diagnosed with cancer, Zachary intuitively understood that he had to play differently with Mattie. He never skipped a beat and never made Mattie feel inferior or disabled. A lot to learn from these two friends. In any case, when the Marines came into Mattie's room, Zachary was equally intrigued and he and Mattie enjoyed the experience. 


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

  • Number of people diagnosed with the virus: 19,944,307
  • Number of people who died from the virus: 345,316

As 2020 comes to a close, all I can say is once again I have seen how fragile life is and how so much of life is out of our control. Sure I could be talking about COVID-19, but my particular lens is focused upon my dad's dramatic health decline. At times I still have trouble processing how my dad could go from living independently one month, to the state he is in now. The decline was rapid. 

I suspected my dad had early stage dementia for the last 4-5 years. Whenever, I mentioned my concerns to my parents, they weren't taken seriously. I even tried emailing their doctor about my concerns. He neither responded nor did anything about it. However, in May of this year, my dad was a mess. He lost 30 pounds, had a kidney stone embedded in his ureter (requiring surgery), and a urinary tract infection that turned to sepsis. He was hospitalized for a week and during that time was given a CT scan with contrast. My dad had an allergic reaction to the contrast and developed uncontrollable hiccups. Hiccups for two weeks straight. The doctor put him on Thorazine, an anti-psychotic. This drug had no impact on the hiccups, however, I believe it contributed to his confusion and delirium. It was me who challenged the doctor by phone and encouraged him to STOP the drug and instead try Baclofen, a muscle relaxant. Which in two hours stopped the hiccups. Nonetheless, my dad entered the hospital in May physically ill, but when he was discharged we weren't only dealing with physical impairments but significant cognitive decline. We held out hope that this decline would reverse itself. But now I understand this will never happen. 

My dad was always a bright, insightful, sharp, and perceptive person. The person in front of us now is not this person. For example, today my dad asked me where Peter celebrated Christmas. My dad thought that Peter was in Boston for Christmas. Those of you reading the blog know that Peter was in Los Angeles with me for Christmas. My dad has NO MEMORY of this. An event that happened only a week ago. I reminded my dad about Christmas and told him that I got him showered and dressed Christmas day. He had NO MEMORY of that either. I mentioned this to him because he is very concerned that his caregivers aren't coming tomorrow, since it's a holiday. So I reminded my dad that I took care of him on Christmas and in fact, it was me who created the whole morning routine..... getting up, showered, dressed, breakfast, cognitive brain exercises, walking in the neighborhood for twenty minutes, etc. 

I have also noticed that my dad can't keep track of when he ate. For example, he can have breakfast with us at the table. Then we do his cognitive exercises and walking routine. When he gets back from the walking routine the past two mornings, he asked me..... did I have breakfast yet? He can neither remember eating nor does he have a feeling of satiation. Today my dad had a GI doctor appointment. Given my dad was hospitalized with an impacted colon in June 2020, it is important to keep these follow up appointments. I told my dad that we were going to leave for the doctor at 10:30am. He can no longer retain information. Instead, every 15 minutes he asked me when the doctor's appointment was and when we were leaving for the appointment. Mind you we have a white erase board near his chair that lists his daily schedule. The constant questions and repeating of myself can be exasperating, but I know he isn't doing this on purpose. So I naturally answer his questions and try to alleviate his anxiety. 

What I was pleased about was my dad got a good doctor report. The doctor commented on how physically better my dad looks from when he saw him in June. He has gained back his weight and his coloring is good. While I am here, I make sure both my mom and dad have a very balanced and full meal mid-day, and given that my dad doesn't eat left overs, I am cooking something new each day. 

In the midst of everything else I am balancing, I went to the grocery store today. I have gotten to know the store's manager. In fact, she got to know Peter too. Beatriz knows both of our names. When she saw me standing on line today, she waved me over to the self check out stand. I typically don't like doing self check out with vegetables, because I always find dealing with the register difficult. Nonetheless, she encouraged me to try it and she stood by my side as I rang up a vegetable. I got the hang of it quickly. In any case, she cheered for me when I was done and told me that Peter is a wiz at this, and she knew I could do it too. I absolutely love her. She says she loves her job and working with people. It shows. It makes such a difference to interface with someone who smiles, who wants to help you, and is so professional. I wish I could take her home as NO ONE in my Safeway even says boo to me. 

December 30, 2020

Wednesday, December 30, 2020

Wednesday, December 30, 2020

Tonight's picture was taken in December of 2008. Mattie was in the hospital and received many gifts from friends. Christmas stockings, a magnetic Santa for his wheelchair, a Christmas blanket, and of course a Christmas decorated Dunkin Donut! Despite all Mattie was dealing with, he was still able to smile, and we worked hard to keep him comfortable and as happy as possible. What we quickly learned from Mattie's diagnosis and treatment was that we had to live for the present. Forget the long term plans and looking toward the future. 




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

  • Number of people diagnosed with the virus: 19,722,442
  • Number of people who died from the virus: 341,964

Given that yesterday wasn't a good day, it was hard to be in a positive mood today. In addition to all the other things to manage here, I had to add garbage removal to my list. Typically the gardener takes all three trash bins out to the street curb for trash pick up. This is crucial because it is a 500 foot walk from their front door to the street curb. It would impossible for them to roll these heavy garbage bins on their own. 

Any case, yesterday I noticed all their neighbors' trash cans were outside at the curb, yet my parents trash cans were not taken out. So I mentioned this to my mom and my dad's caregiver. As I thought their trash pick up day was Wednesday. However, my dad's caregiver (the same one who yesterday insisted I needed to clean inside the kitchen and bathroom trash cans) assured me I was wrong and said trash pick up is Thursday. In any case, this morning, while walking my dad up the street for his 20 minute exercise routine, I noticed all our neighbors' trash cans were emptied, because guess why??? The garbage trucks came by TODAY! ON WEDNESDAY!!! This may sound like NO BIG DEAL, but remember I wasn't in a stable place as of yesterday. The fact that we missed trash pick, sent me on a tirade! As our trash bins were overflowing already and there is NO WAY we'd make it until next Wednesday. 

So I ran back to my parent's house and quickly called LA sanitation. Fortunately I was connected to a lovely man, who literally sent the trucks back to my parent's house. But I had to take all the bins out myself! Therefore my question is what's up with the gardener? If he planned on taking this week off, which is fine, telling us would have been helpful, so that I would have known to put out the cans on Tuesday!

My mom's friends dropped these cuties off to me today! She makes the best gingerbread, and its funny how these little fellows can bring a smile to my face!
Peter's mom sent me this photo of Sunny! Apparently they went for a walk with him, and he came back, helped himself to the couch, and took a nap. 


















Holidays are always problematic with caregivers. For the most part, I try to be flexible, because I know people have lives and families of their own. I asked my dad's caregiver about New Year's day, as I assumed she was working on Friday with us. But I learned today, that she has other plans. What would have happened if I did not ask her? When was she going to tell us? Meanwhile, both of my dad's caregivers are talking about switching days they will be working. Not what I wanted to hear! I would love for life to go back to the way it was.... living life without caregivers. However, I know that is not possible and though my dad has physical limitations, it is the great cognitive decline that makes independent living a thing of the past. 

After doing laundry, other chores, making linner (lunch and dinner), cleaning up, getting mail, and settling my dad in his chair, we decided to go out for a walk. My mom and I needed the fresh air and to clear our heads. We saw some wonderful Christmas decorations. This house reminded me of a decorated gingerbread house.


This house and the one above are on the street I lived on when I was a teenager in California. 
This house is a conversation piece! 
Santa with all his reindeer. Rudolph even had a red nose!
Light up lollipops!
Simple but elegant. 
Looked like a Christmas cottage to me. 
A tree with red and white lights. It looked like a candy cane. 
Not Christmas related, but the color caught my attention! What fabulous blossoms.... with Mattie Miracle colors! 
I love the Christmas ornaments in the trees!
Love the wreath! The one plus here in Los Angeles is that the weather is fantastic. People are out and about walking and everything is green! I don't take that for granted. 

December 29, 2020

Tuesday, December 29, 2020

Tuesday, December 29, 2020 -- Mattie died 587 weeks ago today.

Tonight's picture was taken in December of 2008. It was close to Christmas and Mattie was admitted to the hospital that day. I know this for a fact because Mattie was in real clothes, not pajamas. Mattie refused to wear real clothes in the hospital. Next to Mattie is Tricia, Mattie's favorite nurse. We met Tricia the first week of Mattie's treatment in August of 2008, and we immediately bonded. She took care of all three of us and since she had children of her own, she had great empathy for what we were going through as parents. Tricia saw us under the worst of times and she advocated for us with other nurses and doctors. Her love, care, and dedication to us will never be forgotten. Tricia is a big Mattie Miracle supporter, and helps us keep Mattie's memory alive.  


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

  • Number of people diagnosed with the virus: 19,526,228
  • Number of people who died from the virus: 337,829

Peter left Washington, DC at 4:30am with both Sunny and Indie in the car. Seven hours later he was in Boston. Sunny is borderline anxious and wasn't sure what was happening to him today, after spending 10 days in boarding over Christmas. However, as soon as he went on a woods walk with Peter, he was a happy camper. 


Meanwhile, "Paradise" was hell today. Typically I keep my anger or temper under control, but today I lost it. 

From the moment I woke up at 6am, it was non-stop work, tasks, and demands. My parents both took the shingles shot in November, but insurance covered my mom, but not my dad. So today, my mom and I were on the phone with my dad's insurer. That was enough to smack my head against the wall, but finally found two wonderful women who answered questions and helped us. Turns out CVS did not submit the claim correctly and the insurer is sending us a claims adjustment form! Perfect!!! 

Somehow life here is tough enough but with caregivers underfoot, it can make you want to scream. They are only here for four hours every day, but it is very hard to get anything done when they are here. Of course when they are not here, we really can't get things done either, as my dad needs constant support. 

But today took the cake. One of my dad's caregiver proceeded to tell me that the trash cans are dirty. At first I did not know what she was talking about. So she called me over to the kitchen trash receptacle. She pulled out the trash bag and had me look at the bottom of the can. She did this in the bathrooms too, as she wanted me to see the mess at the bottom of the cans. She noticed this but wasn't about to correct the problem. Instead, she wanted me to! She could see I was juggling a lot this morning, was on the phone, and doing other tasks. Yet apparently I am not doing enough, so why not give Vicki MORE to do!???? I truly was angered by her actions. Especially since if I noticed something, I would just fix it and not bring it to the attention of others who have other things on their minds. To me it is a sign of insensitivity and CONTROL! As this caregiver likes to tell me and my mom what needs to be done or how it should be done in our own home. This type of behavior doesn't go over well with me or my mom. 

By the time the caregiver left at noon, I was ready to blow. Yet I had to cook "linner" (lunch/dinner), do more laundry, collect packages that were delivered at the front curb (500 feet away from the front door) and open them up and dispose of garbage, and the list goes on. My head was pounding and I basically told my mom that this daily schedule is down right insane. At which point she said this is her daily life, and I interpreted what she was saying as.... I am NOT helping enough! I am only here periodically. At which point I lost it, as I am not only balancing travel to LA during a pandemic, but I have a whole other life in Washington, DC that also needs maintenance. FRUSTRATED IN LA!

December 28, 2020

Monday, December 28, 2020

Monday, December 28, 2020

Tonight's picture was taken in December of 2008. It was a typical family tradition to walk down to the National Mall to see the Nation's Christmas tree, all the state trees, and the amazing toy train display. That year, Mattie was undergoing cancer treatment and therefore was unable to walk. So we drove to the Mall and then used Mattie's wheelchair to get around. Peter's parents were with us, and they snapped this photo of us. As you can see, Mattie wasn't in the picture mood! Nonetheless, I am so glad this memory was captured. Because over time, I unfortunately do forget some of the details. 




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

  • Number of people diagnosed with the virus: 19,257,274
  • Number of people who died from the virus: 334,514

Peter picked up both Indie and Sunny today. I hear they are both thrilled to be home. Indie was the first one picked up and thankfully she is so easy going, and always comes home in a good mood. We also used to getting a good report on Indie from our vet, where we board her. 
As you can see Sunny was thrilled to be in the car and coming back home. 
The reunion! 
Indie was sticking close to Peter today, as he was trying to work! 
Of course Sunny had to get in the act! He was sticking close to Peter today, which is very typical of Sunny. He is an anxious fellow and needs time to readjust to being home. 
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Meanwhile, last night, we had quite a rain storm in Los Angeles. It started at 11:30pm, and it involved an incredible light show and intense thunder. If Sunny were here, he'd be besides himself. I could hear the torrential rain. Which just continued all day today! When it rains in LA, it pours and floods. 

Outside my mom's office window, we can see the LA River. The Los Angeles River is a major river in Los Angeles County, California. While the river was once free-flowing and frequently flooding, forming  flood plains along its banks, it is currently notable for flowing through a concrete channel on a fixed course, which was built after a series of devastating floods in the early 20th century.

Normally the sight outside the window is dry concrete! But when it rains, you can see the overflow of the LA River. 


It was another full day today which entailed grocery shopping in the rain and a lot of time in the kitchen. My mom requested a carrot cake. She actually wanted a carrot cake for Christmas, but I decided on a coconut layer cake instead. So today, I made her a carrot cake! 

The final product!
















What's this green stuff? I made homemade split pea soup. Last week, we served a ham while Peter was here. I kept the ham bone and today worked on the soup. Given it was cold, damp, and dreary, it was the perfect soup for the day. My dad had two big bowls of this, three chicken legs, a side salad, and even a piece of carrot cake. I am happy he's eating up a storm. In comparison to April and May when he refused food, this is great progress.