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

June 27, 2020

Saturday, June 27, 2020

Saturday, June 27, 2020

Tonight's picture was taken in August of 2007. I remember snapping this photo right outside our hotel. The hotel had this fountain and pond, which apparently attracted flamingos. Given these lovely pink birds were in the background, I asked Mattie to give us his flamingo impression. Which is what you see him doing in this photo.









Quote of the day: Today's coronavirus update from Johns Hopkins
  • number of people diagnosed with the virus: 2,507,874
  • number of people who died from the virus: 125,504

It was a challenging evening last night. The caregiving company we are working with contacted me at around 9pm to let me know that the first caregiver assigned to us would be coming this morning at 8am. I had no time to prepare my dad for this because he was sleeping when I received the text message. Naturally my mom, me, and Peter were somewhat concerned about this transition. It is very difficult opening up one's home to strangers. My mom lived through life with caregivers years ago when her mom suffered a stroke. Caregivers turned our home upside down. Everything from stole from us, stored iguanas in our freezer, to making thousands of dollars worth of international phone calls. All of these horrible experiences remain with you! It is hard not to take them into a new caregiving situation. 

Being here in California is not only physically taxing, but emotionally very draining. As Peter and I see my dad transformed physically and cognitively and at the same time we have to help my mom come to terms with these drastic changes. This is not how either of them thought life would go, and therefore such changes are a loss. I am trying to do my best to support both of them, but I am very aware of the fact that I do not live around the corner. I am not even a state away, I am across the country. Which is very frustrating and stressful for me, as I can clearly see that without on the ground support, they will not be able to live in this rental house long term.

The caregiver that arrived today was the A team. Her name is Zhane and she is half Chinese and half Puerto Rican (unfortunately she can only work with us 2 out of 7 days). Very smart, very sensitive, and has a wonderful way of communicating and bonding to all of four of us today. I walked Zhane through the showering process, how to dress my dad, get my parents breakfast, start the laundry, and how to motivate my dad to walk and do his exercises. My dad's occupational therapist came over today and they did a therapy session outside on the patio. It was the highlight of the day. What I am clearly seeing is that my dad is more compliant to do walking and exercising with the therapists and with Zhane. Today could have been an anomaly, time will tell. All I can say is we are exhausted! I can't stand the early morning wake ups, followed by intense days! Involving both caregiving and moving my parent's into a new home. Everyone who comes to the house comments that they can't believe they haven't lived in this new house for years. Why? Because there are NO boxes and everything is unpacked and organized.

June 26, 2020

Friday, June 26, 2020


Friday, June 26, 2020

Tonight's picture was taken in August of 2007. We were staying on the island of Coronado in San Diego. That day, Peter took Mattie around the island on a bicycle. Apparently they took a break from riding and Peter snapped this fabulous photo of Mattie with the famous Hotel Del Coronado in the background. This is still one of my favorite photos. 








Quote of the day: Today's coronavirus update from Johns Hopkins
  • number of people diagnosed with the virus: 2,467,658
  • number of people who died from the virus: 125,046

Our day started early again, with the same routine of me getting up, showered and dressed so that I could wake my dad, help him shower, and make breakfast. My dad had a visit from a nurse this morning. I fired the first visiting nurse as he took my dad's blood pressure and claimed the it was normal, when I knew it was high. He then proceeded to tell me that this high blood pressure was normal for an older adult. Needless to say, I consulted with doctors on this and no one agreed with this nurse's perspective. So OUT he went. I could tell today's visiting nurse was on edge because she knows I have no problem asserting myself and getting rid of her too. After the nurse's visit, my dad decided he wanted to sit outside to watch the golfers. We bought him a portable radio too so he could take it with him around the house. 

While my dad was outside, we began returning calls, and completing the request to activate my dad's long term care (LTC) insurance plan. This plan will pay for caregiving services after we pay for 45 days out of pocket. All LTC plans have this grace period. Keep in mind that we are balancing all sorts of calls from caregiving/healthcare to all the natural calls one has to make when moving into a new home (phone, gas, power, internet, cable, change of address requests, etc). It is non-stop work and we are all exhausted. 

I sat outside with my dad for a bit and we spoke to several groups of golfers. One wanted us to cheer him on! It is like having a live TV golf game at our disposal around the clock. 

My dad is supposed to do walking and exercises daily. So far, I have had no luck at getting him to comply. We have tried to reason with him, to encourage him, and to also paint the reality of the picture. Nothing is really working and it is hard to want something for someone if they don't want it for themselves. 

Later today, my mom and I went on a three mile walk around her neighborhood. Along our journey, we passed many pooches and one cat. Not to mention glorious plants like this hydrangea. 
I can't get over it, but my parent's neighborhood has large flocks of green parrots. You can hear them before you see them! Needless to say, it is only 8:20pm here and I can't keep my head up! I am that tired. 

June 25, 2020

Thursday, June 25, 2020

Thursday, June 25, 2020

Tonight's picture was taken in August of 2007. Peter snapped this photo of us at Sea World. We knew the strategy of getting seats to see the shows, by arriving 30 minutes before each show. The sun was strong and Mattie burned easily, so I always traveled with sun screen and host of other things. Mattie loved Sea World and especially enjoyed seeing the animals and learning about how they communicated and interacted with humans. 






Quote of the day: Today's coronavirus update from Johns Hopkins
  • number of people diagnosed with the virus: 2,418,570
  • number of people who died from the virus: 124,355

Peter was up by 5am and I got up at 6am. I literally wake up, make the bed and head to shower and get dressed. I do this because if I don't, it won't happen! Since my dad was having back to back physical therapy and occupational therapy today, I had to get him up at 7:30am to shower, dress, and give him breakfast. It was another whirlwind of a day. 

My parents live on a flag lot, and the lot has a gate. How anyone has lived with this dysfunction all these years I have no idea. There is NO door bell outside the gate and NO intercom to converse with someone outside the gate. That may not sound like a big deal, but it is a huge problem. As the gate is about 400 feet from my parents front door. Keep in mind that my dad is ambulatory, but only under supervision. So if Peter and I were not here managing this gate and letting people in and out, I have NO IDEA how my mom would manage. Peter is researching wireless doorbells and entry systems! But shouldn't the owner of the house have thought of this years ago? I can't understand how other tenants dealt with this issue! As I would have lost it living here. To me this is a major safety issue. 

The first visitor today was the occupational therapist. The first therapist they assigned us, I asked NOT to return. Same with the visiting nurse. I thought both of them were incompetent. I now have a reputation with the in-home health company. So now they are only assigning us professionals. As both my dad's PT and OT have doctorate degrees and the visiting nurse is a RN. The OT did an evaluation today and he had very good suggestions on ways to help my dad regain some independence and to stimulate his cognition. I honestly believe that between physical illness and lock down from COVID, the social and mental stimulation my dad typically receives by interacting with the world disappeared and this void had enormously negative consequences for him. 

After the OT visit, my dad's PT visited. I love the PT. He actually looks like Mattie's kindergarten teacher, so I fully admit that I have transference issues. As I am fond of the therapist, because I was fond of Mattie's teacher. In any case, the PT observed that my dad is not progressing but rather regressing since his hospitalization last week. So he called the in home health agency and was able to restart the therapy sessions. Instead of it being session four, it became session one again today. He felt that my dad's decline merited MORE sessions.

In addition to all these visits, we were balancing phone calls and a conference call with my dad's long term health insurer and the in-home health agency. I am getting quite the education but one piece of advice is I strongly recommend people consider purchasing long term care insurance. This is vital because when dealing with a health crisis, health insurance and Medicare does NOT cover day to day caregiving. All the assistance families typically need which include bathing, feeding, cleaning, household chores, and transportation to appointments. 

This afternoon, we spent about an hour outside on the patio. I decided to snap some photos to show you the wonderful backyard my parents are able to enjoy. The property is like a park and it is bird heaven. Tons of hummingbirds too. 
Peter planted a Mattie Miracle rose!
I don't know if you can see this charming fountain?! But tons of birds bathe in this fountain daily. It is a birder's paradise. 
In my parent's backyard is this amazing tree..... angel's trumpets. These flowers are pollinated by hummingbirds! Which explains why there are SO many hummingbirds in the backyard. The flowers are said to look like an angel's gown, which is how it got its cute name. 
There are many many beautiful hibiscus in the backyard too! Being outside and taking a small break from chaos is very therapeutic. My dad loves being outside and he especially loves watching golfers on the golf course! On any given day, golfers chat with us through the fence and we exchange pleasantries. 

Wednesday, June 24, 2020

Wednesday, June 24, 2020

Tonight's picture was taken in August of 2007. Our hotel had parakeets. Mattie had the experience of interacting with parakeets from his many trips to the bird house located at Butterfly World in Florida. Therefore, he understood that the birds weren't going to hurt him. But instead were interested in flying around him to get a snack or treat. San Diego was a great place to vacation with Mattie, because we could do things by day with my parents, and then in the afternoon, we could do outdoor activities with Mattie. Mattie loved every minute and back then I used to wonder..... will we ever be able to stop moving and relax? Of course now being able to put his energy into context, I would much rather have a healthy and active child than one who had to face childhood cancer. 









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

  • number of people diagnosed with the virus: 2,381,538
  • number of people who died from the virus: 121,979

Yesterday was our first night sleeping at the new house. Of course anything new is always an adjustment. Yet thankfully my dad seems very happy with his new surroundings. The new house has a beautiful backyard, almost park like. I will have to take some photos to show you what we are looking at. In addition, part of the backyard faces a golf course. Hole #12 to be specific. Which is wonderful, because you can literally sit on the patio and tune into a golf game or match. Many of the golfers wave and say hi! 

Peter and I are not sure what task we are addressing first, between the move and caring for my dad's needs we are on overload. It wouldn't be as difficult if we lived geographically close, but the distance adds pressure on us to make sure things are in place for a stable transition when we return to Washington, DC. So in addition to everything else, we talked with a caregiving company today to arrange for services. My dad is already getting nursing, PT, and OT care, but when I am not here, he needs help with bathing. I also want to meet who he is assigned to work with, so we are starting services on Saturday to see how it goes. Needless to say, I am not good with letting others in to help in this manner, but I also know it is important in order to maintain my mom's health.

If you ask what we do all day, I would say our day starts early. Peter at 5am, and me at 6:30am. From the moment we get out of bed we don't stop moving. I manage getting my dad up, showered, dressed and fed breakfast. I administer pills. Then while he rests...... my mom, Peter, and I were doing chores around the house. After which, today we took my dad for a foot doctor appointment. On an aside the foot doctor's staff were lovely! Unlike my dad's GI doctor yesterday. I literally had a screaming match with the receptionist, who refused to let me go into the appointment with my parents! I told her to STOP talking to me before I throttled her. Later in the day, we ran to their old house, cleaned it and did a walk through with the property management (which lasted an hour and 20 minutes) for an inspection and a returning of the keys. Thankfully ONE HOUSE DOWN! Managing two properties was beyond crazy!

With all this said, since we arrived, I have seen a continual improvement in my dad. He is eating now, has more lucid moments, and it is my hope his exhaustion and stamina will also increase. What I have learned though is my dad DOESN'T like eating at home. He prefers going out and I imagine it provides him a social experience, choices, and structure. Right now he has three people meeting his every need, and naturally I worry what happens when I leave. Nonetheless, I will be returning this summer (without Peter), and hope to continue where I left off. 

But for now, we have my parents almost all unpacked and we are trying to manage connecting phones, cable, internet and other services. Moving isn't for the meek! Certainly it takes super human qualities to face this on top of a health crisis. 

June 23, 2020

Tuesday, June 23, 2020

Tuesday, June 23, 2020 -- Mattie died 560 weeks ago today.

Tonight's picture was taken in August of 2007. Behind Mattie and Peter was the wonderful Coronado bridge that connects the city of San Diego to Coronado. I remember snapping this photo right near our hotel. As the hotel looked onto the harbor and in the afternoons, we would take Mattie for walks and other adventures to keep him busy, moving, and engaged. 








Quote of the day: Today's coronavirus update from Johns Hopkins
  • number of people diagnosed with the virus: 2,346,937
  • number of people who died from the virus: 121,224

We checked out of the hotel today at around 9:30am. Then went to the first doctor appointment for the day. I am happy to say my dad has gained over five pounds since we have been here. My dad doesn't like drinking fluids or eating at home. We have tried! He responds to eating out in restaurants. Somehow this stimulates his attitude about food! Therefore, going out is psychosocially necessary as it helps to orient my dad to daytime, it gives him the opportunity to converse with others, and any social interchange is mentally stimulating. 

The first appointment was with their long time family doctor. He was pleased to see my dad's progress from his two recent hospitalizations. As he reminded us, that when he saw my dad at the end of May, my dad looked gravely ill. My dad had lost 30 pounds and the doctor was quite sure he had cancer. 

What I love about doctors is they only think about the physical and the data! No attention is ever paid to the psychological and social impact of my dad's health care crisis on him, my mom or us! As my dad did not just have a UTI, a kidney stone removed, recurrent hiccups, and an impacted colon. But he had all these issues, was confined to a hospital without visitors, and between this and a three month lock down from coronavirus, it altered by dad's cognition, energy level, and stage of dementia. 

After this doctor's appointment, we visited their new home and spent several hours unpacking and getting organized. I took point on all my dad's things, as he no longer has the where with all to participate and face the complexities of relocating. 

I was on the phone today with his in-home health care company as well as a caregiving company who can assist my mom when I am not here. We have a zoom call with this company tomorrow to start a request for services. Meanwhile, later this afternoon, my dad had a follow up gastroenterology appointment. This doctor maybe lovely but his receptionist is a real _itch! I typically don't lose it without good cause, but she refused to allow me back into the appointment because of COVID-19. It was either me or my mom, and it seemed more appropriate for my mom to go as she lives with my dad. But I wasn't happy with the decision and the receptionist should know better if a family member requests to go back. Do note that we were the only three people in the office. It was the last appointment for the day, and I think she could have accommodated me if she had a heart. 

This evening we took my dad out for an early dinner. He ate like a champ and we are working on getting him to consume fluid. It isn't his forte, but we reminded him that fluid will help prevent kidney stones, UTIs and an impacted colon! These three things alone should inspire one to drink!

Monday, June 22, 2020

Monday, June 22, 2020

Tonight's picture was taken in August of 2007. Mattie could see these cute bicycles outside our hotel window and he wanted to try it. So we rented one, maybe for an hour! That was MORE than enough for me. My dad snapped this photo before we started pedaling, which was why I was smiling. I can't tell you how difficult it was to get this bicycle to move. It is the front two riders who do all the work, and all I can say is wow! I am not sure what Mattie loved more.... the ride, or hearing my commentary about pedaling.






Quote of the day: Today's coronavirus update from Johns Hopkins
  • number of people diagnosed with the virus: 2,310,786
  • number of people who died from the virus: 120,402



Peter was up at 5am again today. He left the hotel and got to my parents house. He met the movers this morning at 8am. Two trucks and six movers. They were incredible and worked like the wind. They literally moved my parents furniture from one house to another in 6 hours! The houses are thirty minutes apart, so truly it was a feat. 

The movers told Peter and I that we did the hard work (breakables, some pieces of furniture, etc) and saved my parents thousands of dollars. 

I moved my parents in 2018, so I feel like I am an expert on how to effectively and efficiently manage a local move. The key is NOT to use boxes. Boxes are a killer because once you pack and unpack them, then you need to break them down and dispose of them! I much prefer using plastic bins. Pack them, unpack them, and then USE the same bins for the next load!

Peter was so impressed with how quickly the movers were getting things wrapped and onto the moving trucks this morning. Literally they had my parents house totally pack and on the truck in 2.5 hours!
This used to be my dad's home office. I showed him this photo today and he had no idea what he was looking at! The cognitive decline in my dad is disheartening! Especially since I saw him in December and he wasn't as profoundly impacted then. I blame the lock down associated with coronavirus. It has had a devastating effect on him, as he wasn't able to leave the house for over three months. Going out every day for lunch (pre-covid-19) was stimulating and normalizing for him. When he was prevented from doing this, he lost his consistent schedule, his social world, and in the process his dementia took over. 
An empty kitchen and family room!
When the 6 guys got to the new house, Peter treated them to lunch. I think they had a great time outside and I am so happy Peter thought to do this! These guys were awesome, moved quickly, diligently and got the job done in one day! 

Peter and I will be digging out over the next couple of days. If this was all we were doing, it would be manageable. But my dad has doctor appointments, in home therapy, and we have to figure out getting support for my mom when I am not around.

June 22, 2020

Sunday, June 21, 2020

Sunday, June 21, 2020

Tonight's picture was taken in August of 2007. We spent the weekend in San Diego with my parents. Mattie was a dynamo and always on the go! After a full day of touring, he was still energized. So in the afternoons, Peter and I took Mattie to the hotel pool to expend more of his incredible energy. As I always say, Mattie somehow knew his time on this earth was going to be limited, so he never wasted a moment of it. 







Quote of the day: Today's coronavirus update from Johns Hopkins
  • number of people who were diagnosed with the virus: 2,279,879
  • number of people who died from the virus: 119,969

I was jolted awake at 5am to my mom screaming. I literally leaped out of bed to find out what was going on! What was happening? My dad was trying to get out of bed to go to the bathroom and he slide down the side of the bed and was practically on the floor. My mom was holding my dad when I got into their bedroom. I tried to raise my dad, but he was absolutely dead weight. So I called for Peter. Peter was able to get my dad up onto his feet. But all of us are on edge waiting for the next shoe to drop. The physical aspect of my dad's care is hard but the worst part of all of this for me is his cognitive decline and his constant exhaustion.

I wish I could have gone back to bed after being jolted awake, but we didn't! Peter and I started our day of chores as the moving company is coming bright and early on Monday to begin my parent's move out! Peter and I never stopped moving today. He has moved most of the small furniture pieces to my parent's new home. We have set up their bathrooms, kitchen, bedroom, and offices. Peter is also managing all the tech needs such as washer/dryer, TV, cable, and internet transitions! Meanwhile, what didn't I do today. I helped my dad shower and dress. I made breakfast, cleaned up, vacuumed the entire house, cleaned all the bathrooms, cleaned the kitchen, the laundry room, cleaned out the refrigerator, did laundry, packed up all the bedding on the beds, and put together a valise for my dad and for my mom. The list was endless! 

We went out for an early dinner to celebrate Father's Day! It was my dad's first day out of the hospital and I would say he is absolutely worn out. He spends a good portion of the day sleeping and though his healthcare providers have told him to drink more fluids and to walk daily, we can't get him to do either! I am signing off as tomorrow I am sure will be a hellish day. Moving under the best of circumstances is hard, but during a pandemic and when managing a health care crisis, it is close to impossible.