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

September 5, 2020

Saturday, September 5, 2020

Saturday, September 5, 2020

Tonight's picture was taken in September of 2008. Mattie was two months into treatment. That day we were home and a friend dropped off this dancing yellow bird. Do you see it on top of the furniture? Literally we pressed a button and music came on and the bird danced. Mattie and Peter were giving me their bird dancing impression. Naturally I had to capture the moment, and I am so glad I did! Moments in time are fleeting and I am happy I never missed the opportunity to snap a photo. As all these photos are now priceless to us. 




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

  • Number of people diagnosed with the virus: 6,224,789
  • Number of people who died from the virus: 188,098


I am keeping a close watch on my dad's leg. Mind you of course that this is from 2,500 miles away. But thanks to technology, receiving photos is easy. I alerted my dad's caregiver that I want photos daily because its important to see if the new treatment is working. 

Though this doesn't look great, there are no more blisters and oozing going on. So things are drying up. I am hoping within a few days the redness subsides. 

Though feeling very tired, we did take a two mile walk with Sunny and I even went grocery shopping. Somehow life is filled with chores, regardless of where you are. Yet I learned when Mattie had cancer and we were trapped inside the hospital, that doing the daily routine (including chores) is a blessing. It means you are well enough and have the freedom to do this. 

 

September 4, 2020

Friday, September 4, 2020

Friday, September 4, 2020

Tonight's picture was taken in September of 2008. Mattie was in his second month of treatment. I think this gives you some idea how small the room was for THREE people. Nonetheless, Mattie loved his cardboard boxes. The boxes served as great diversions. As he could decorate, build, and play with them. Back then, you wouldn't believe what a God sent a box could be. Peter and I needed every tool in our toolbox to keep Mattie comfortable, entertained, engaged, and not shutting down emotionally. 




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

  • number of people diagnosed with the virus: 6,187,336
  • number of people who died from the virus: 187,464

Every day, I am under some sort of delusion that it will be an easier day! FORGET IT! Bright and early I received a text message from my dad's physical therapist. This PT is an incredible person. Medicare has approved of NO MORE visits, so we are paying Jon out of pocket. Yet Jon is giving us a very reduced rate! However, in my opinion Jon is worth his way in gold. He lives about five minutes from where my parents are and he says he will respond to them 24/7! Who on earth does that these days? An incredibly caring professional! 

Jon wanted me to know that he has been reflecting on my dad's leg and felt he needed to say something to me. He said that the leg was looking awful yesterday during their PT session and that my dad kept wiping his leg from the oozing blisters running down his leg.  

After I got Jon's text message, I reached out to my dad's caregiver and told her I wanted her to take a photo of my dad's leg today. I also asked her whether the leg was improving. She indicated that it was healing. I bought that until I saw the photo! Thank goodness I asked for a photo!

So this was Tuesday's, September 1, leg photo! I did not like the look of the infected insect bite then, but look at today's!
This is the leg today (September 4). Does this look like an improvement to you? I saw this photo and lost it. I then contacted the home health agency to see if the wound care professional could come out today! Of course she couldn't with it being Labor Day weekend. My dad's visiting nurse was also out of town for the weekend. 

So then what? I called my mom, who said she made a dermatology appointment for my dad on Tuesday of next week. I told her that would be too long to wait, especially if this infection spreads! We want to avoid a fever and it moving into his bloodstream. My mom and today's caregiver weren't as alarmed as I was, until I sent them both Tuesday's leg photo! You can't deny comparing the photos that things are not improving but instead getting worse.

I am quite sure I drove my mom nuts today. Not my intention, as I reminded her, I am trying to prevent another crisis, emergency, and hospitalization. Thankfully my dad saw the dermatologist today and he now has him on oral antibiotics, topical hydrocortisone cream and a soak with something called Domoboro medicated powder. The powder mixed with water is supposed to provide relief from itching caused by oak, sumac, poison ivy, mosquito and insect bites, redness and irritation.

Meanwhile, a family friend who lives near my parents told me that Los Angeles is expecting rolling black outs because California has to conserve energy, especially with 110 degree heat. Really NOT what I wanted to hear, as electricity is important to all of us, but especially for older adults. Our friend assured me he had a back up generator and would come install it if they lost power. Another angel! Given that my mom was on overload, I text messaged this angel to see if he would pick up all my dad's scripts. Which he is! I am thankful to have this friend, because he can be there on the ground when I can't. 

September 3, 2020

Thursday, September 3, 2020

Thursday, September 3, 2020

Tonight's picture was taken in September of 2008. Mattie was in his second month of receiving chemotherapy. Even early on, Mattie had moments where he did not want to see, hear, or be around people. Which wasn't always possible in a clinic or hospital. Which was why, in this particular case, Mattie constructed a home out of a cardboard box. Notice that Mattie was sitting in the box so you couldn't see his face. Yet his IV line was streaming outside the box. 




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

  • Number of people diagnosed with the virus: 6,141,580
  • Number of people who died from the virus: 186,467

 

I started my day by going to the dentist. My 6th month dental cleaning was scheduled in March. Due to COVID it was cancelled. I frankly forgot all about this because while COVID was happening I had to have three root canals and therefore three crowns put over those teeth. I feel like I have seen the endodontist and the dentist way too often. Therefore, when the hygienist said I hadn't gotten my teeth cleaned in a year, I just looked at her. As if that was my decision. They were the ones who canceled my appointment in March. So I don't deem that as ME FORGETTING an appointment. Which is how she initially made me feel. 

I have lived in Washington, DC for over twenty years. However, this is the first time I do not feel comfortable walking around in my own neighborhood. Businesses and stores are boarded up because of violence and looting. Therefore, I had Peter drive me to and from the dentist office today. 

After that visit, we took Sunny for a walk on Roosevelt Island. We were greeted by a female deer. Do you see her?
She was very brave and had no problem with us getting within feet of her. What she did not like was Sunny. Sunny was tugging and wanted to chase the deer, which of course did not happen. Sunny however  was sighing with frustration over our decision. 
This is the third lunch Peter and I had out this week. It was lovely being by the Potomac River. However, I remain very tired and very strung out. It is hard to stabilize because the caregiving issues I left in Los Angeles are not over. The situation isn't going to resolve or improve. My only hope is that all the help Peter and I provided this summer will keep my dad's health situation stable. 


September 2, 2020

Wednesday, September 2, 2020

Wednesday, September 2, 2020

Tonight's picture was taken in September of 2008. Mattie started treatment at Georgetown Hospital in August of 2008. The staff had known Mattie for about a month. Yet they figured out early on that Mattie loved packing boxes. They saved whatever boxes came in, because they knew he would want to build and create with them. As you can see, that day he picked up three more boxes at the hospital. Mattie would create with them in the outpatient clinic or in his hospital room. Needless to say our hospital room was about the size of a small walk-in closet. Besides housing the three of us, it also had many of Mattie's art projects all around the room. It was always full house.


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

  • number of people diagnosed with the virus: 6,094,562
  • number of people who died from the virus: 184,914


I maybe home in Washington, DC but I still feel like I am living in "paradise." For those of you who haven't been following along, "paradise," is my facetious name for where my parent's live. I have come home extremely worn out and very agitated. It is hard working 14 + hour days for a month. Though it is hard with that day in and day out pace, it is ten times harder trying to manage things from Washington, DC.

Today, I was trying to coordinate my dad's care for his leg. This horror show on his leg is an infected insect bite. He has been scratching it non-stop and has made it much much worse. We have tried all the usual things from neosporin, cortizone cream, to benedryl. Nothing worked, but instead it is spreading, oozing, and still itching. I was afraid my dad would get cellulitis, a bacterial infection of the skin. Cellulitis can spread rapidly. Affected skin appears swollen and red and may be hot and tender. Without treatment with an antibiotic, cellulitis can be life-threatening.

I sent this photo to his doctor and then wrote to my dad's visiting nurse and his wound care specialist. Everyone but the doctor has been great and very professional about responding. I arranged for the wound care specialist to come to the house today to examine the wound and report back to the doctor. I made it clear, I wanted my dad started on antibiotics. It was all arranged. Then I received a call several hours later. The wound care specialist was at the house, but NO ONE was answering the front door! Why? Because my mom created her own plan and took my dad to the doctor instead. She did not text message the wound care specialist. I of course had to apologize profusely to the wound care specialist, as we are wasting her time driving around town. It is very frustrating for me. If you want my help then we have to be on the same page. 

Meanwhile, I arrived in Los Angeles on August 9th. On August 10th, I called Best Buy to request that someone come to fix my parent's dryer. They have a service plan through Best Buy. Best Buy contracts their service calls out to local companies. So on August 11th, was my first interface with Ashton Electronics based in Culver City, CA. The tech examined the machine and said that the dryer wasn't functioning because it needed new parts. Mind you this machine is only two years old. But that is another conversation. Any case, the tech said that he had to order the parts but that Ashton Electronics would contact me when they were received. Needless to say, a week went by. Finally I contacted them again on August 21. At that point, their administrator (Amy) told me that she would schedule the parts to be installed into the machine on August 28. Needless to say, August 28, came and went, and no repair person showed up. So I called Ashton Electronics again. The administrator had some sort of excuse as to why the repair never happened. Any case, she assured me that a repair person would be at my parent's house TODAY before noon. I remember this conversation specifically because I said given my dad's health concerns, morning hours were better for visits. That we also need the washer and dryer to work because of all the laundry we do. She said she understood and that we would be the first customer of the day. My dad's caregiver witnessed this call, and therefore she had it in her calendar that the repair person was coming this morning. 

Needless to say, the repair person did not show up again (0 for 2). My mom tried dealing with the administrator, Amy, who said that there was NO appointment ever scheduled for today. My mom was so annoyed with Amy, that she asked me to deal with it. So I called Amy myself. Do you know she hung up on me!!! I called her right back. She said I was yelling at her and that she wouldn't be talked to like this! Someone has to shake her up because she runs a very unprofessional business. I told her she could pretend there was no appointment today with my parents, but I don't have dementia and I know what we agreed to. She said we never had this conversation! So what does that mean, I am making it up? I am delusional? If I was not a mentally stable person, I would personally visit Amy and throttle her. 

So now I am on the phone for over an hour with Best Buy, trying to talk to the CORRECT person. They need feedback about their contractor, Ashton Electronics, and more importantly, we need to be assigned a company who can get the job done when they say they will. I feel like screaming! There is never a peaceful moment. 

The highlight of my day, is Peter and I went out to lunch by the Potomac River today. But even at lunch, I was on the phone with my dad's health care company!


September 1, 2020

Tuesday, September 1, 2020

Tuesday, September 1, 2020 -- Mattie died 570 weeks ago today. 

Tonight's picture was taken in September of 2008. Mattie was in his second month of chemotherapy and was home between treatments. While home, he got a visit from JJ, our resident Jack Russell Terrier, and our neighbor JP. It is hard to believe that both Mattie and JP are both dead and JJ was relocated to South Carolina. Mattie loved animals and always wanted a dog. So we appreciated all friends who visited Mattie and brought their dog, especially when Mattie was in cancer treatment. 


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

  • number of people diagnosed with the virus: 6,064,409
  • number of people who died from the virus: 184,320


For those of you who have been following along, you know that on August 21, I contacted American Airlines. I contacted them because it appeared that my parents would not be able to get a refund for the tickets they purchased for a December flight. They booked their tickets through AMEX travel services, rather than going directly through the Airline. One may think using your AMEX card and their travel services provides you some level of security, and that you could then easily get reimbursed if you are unable to travel! WRONG, WRONG, WRONG! In actuality there is NO advantage to using AMEX travel services! Unless you purchase their travel insurance, you as the customer are stuck. As they follow the guidelines and rules set forth by the airlines. In fact, when I tried to apply for a reimbursement for my parent's airline tickets through AMEX, they told me they were sorry but they couldn't help me. They also said that basically they would be out of pocket for the cost of these tickets because the airline most likely would not accept a medical reason for the request for reimbursement. ALSO WRONG! 

On August 21, I reached out to American Airlines. I went through their customer service system. Naturally my initial instinct was to write to chiefs and department heads. Firing off a nasty gram! But I then I read an article about the importance of going through the proper chain of command when making a complaint and request. That was actually VERY GOOD advice. The customer service representative assigned to our case was a real professional and kind. She actually called me and we discussed the issue over the phone. She then instructed me on what I needed to do, as the Airline Refund Center did not know the extent of my dad's illness and health condition (which is why they initially denied the refund). 

Because I was having trouble with the automated refund center on the Airline's website, this customer service representative agreed that I could send a more extensive medical letter to her email and then she would forward it to the refund center. Not only did she do that, but today, I heard back from the Airlines. They are granting the refund request for both of my parents. Peter and I only fly American Airlines, and now after this decision, we feel confident in our Airline choice. They handled the whole situation very well, and so much for AMEX's advice to me! Later today, I composed an email to our customer service representative thanking her for her professionalism and guidance on this process. As I believe it is important to not only write complaints, but also acknowledge outstanding service. 

The highlight of my day is I got to talk by phone to a friend of mine. She and I went to graduate school together and have been in touch ever since. We live in different states and we have done different things with our degrees. She is a very successful educator and researcher, and in all intensive purposes, I am sure there are professors of mine who may look at how I live my life and what I do as a potential failure. As I am not using my degree perhaps the way it was intended. Which is why when my friend said today, unsolicited, that I use my counseling skills every day in the foundation and with all the countless people I help, that made a big impression on me. She couldn't tell, but this beautiful reflection actually brought tears to my eyes. Which isn't easy, as I don't tear easily!

The second highlight is Peter and I went out to lunch today. It was wonderful to sit outside, without interruptions and reconnect. As Peter has an intense job search under way and many different opportunities that he is juggling. I was happy to hear about each one of them and to be able to focus on him, something I couldn't do for a month. 

August 31, 2020

Monday, August 31, 2020

Monday, August 31, 2020

Tonight's picture was taken in August of 2009. Mattie was in the hospital, and surrounded in the child life playroom by all his hospital friends. Next to Mattie was Liz. Liz was one of the visiting artists who came in periodically and worked with the children and families. Liz's gift and talents revolved around poetry and capturing feelings and thoughts using the written word. Mattie was a rich target, because he always had something to say. Mattie liked Liz and allowed her into his world, which he did not do for just any visitor. Over the course of the year, these two produced many joint works of art together. 


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

  • number of people diagnosed with the virus: 6,023,368
  • number of people who died from the virus: 183,431

I woke up at 4am today, in order to get showered, dressed, make breakfast for my parents, and clean up before catching my ride to the airport at 5:30am. I said good-bye to my parents (of course my dad was still in bed, as he wakes up officially at 8am), which of course was bittersweet. 

I continue to love how empty the LAX airport is, the one and only positive from the COVID lockdown. Typically trying to drive to the airport can take up to 2 hours because of the horrific traffic. Today, I was at the airport within 30 minutes. Everyone in the airport is less stressed and harried. Which makes flying that much easier. 
We had a wonderful pilot today on American Airlines! In all my years of flying, I have never had a pilot greet each of his passengers. He stood in the aisle and made a general announcement about the newness of the plane, the challenges of wearing a face mask during the flight but why it was important, and also he apologized that flight attendants would not be able to service customers given FAA regulations during COVID. He then walked up and down the aisle saying hi to passengers. Frankly I think every pilot should do this. It was a beautiful touch point and for a person who doesn't like to fly, it helped me to know who was flying to the plane. Don't you know he said goodbye to every passenger too! 

I snapped this photo as we were taking off from LAX. Do you see the Southwest  plane taking off on the other runway?

It was very foggy and misty in LA this morning, so I did not capture the best coast line shot. I wasn't sure how the flight would be, given the pilot said we would experience turbulence from St. Louis, onward to Washington DC. Fortunately in my opinion it was very tolerable and I had no problem. Though anytime a plane takes off and lands, it is a good flight. 
When we climbed up through the clouds, we could see the top of Catalina Island. One of the peaks on the Island is over 2,000 feet tall. 
Rest assured, one thing I can always find in Washington, DC is grayness, clouds, and rain. 

When I arrived back home I wasn't sure what kind of greeting I would get from Sunny! But he did not disappoint! 
He may have been with Peter for a month, but he has returned to his old ways of following me everywhere!




August 30, 2020

Sunday, August 30, 2020

Sunday, August 30, 2020

Tonight's picture was taken on August 9, 2009. Four days after we learned about Mattie's terminal diagnosis. That evening, Linda (Mattie's child life specialist) planned a special surprise for Mattie. She coordinated with our local Lego store to have Mattie come in after hours, when NO ONE else was there and work with master builders. We were very familiar with that store, because we practically bought every Lego kit in the store that year to keep Mattie busy in the hospital. It was a special evening for Mattie. The master builders asked Mattie what he wanted to build. Thinking he would turn to a store kit. Instead, Mattie wanted to create a NYC taxi. Something he was familiar with from his trips up for treatment at Memorial Sloan Kettering. We still have Mattie's taxi in our living room today. 


Quote of the day: Today's coronavirus update from Johns Hopkins
  • number of people diagnosed with the virus: 5,994,855
  • number of people who died from the virus: 183,045

It was another whirlwind today. I honestly feel frenetic or manic. I jump from one task to another, to another. As always, I woke up at 6:15am. Got myself showered and dressed and then began the day with making breakfast, cleaning up a bit, and then awaited my dad's caregiver. Once my dad was washed, dressed, and had breakfast, we sat down and did 30-40 minutes of brain exercises. It isn't his favorite time of day, but I feel it is important to push him. I have seen great progress with regard to Numbricks puzzles. We have done 11 days worth of puzzles, and I can see the more he does it, the more he is getting the hang of it! I view that as a sign of hope. What will happen when I leave? I am not sure. It is my hope that my dad's caregivers will continue what I started, and I have told them that the cognitive exercises are as important as the physical ones. Yet I am aware of the fuss my dad puts up regarding these exercises. I listen but I won't let him get away with not participating!

Later in the morning, my mom and I went for our weekly Sunday walk in the neighborhood. While walking, we ran into a census bureau worker canvasing the area. We had a delightful conversation with him and learned about his family's history and he is working on a movie script that pays tribute to Chinese Americans during WWII (as his dad served in the war). However, while talking, we lost track of the time. I would say we were about a mile or more away from home. It was 11:45am, and the caregiver leaves at noon. Literally I left my mom, so she could walk home at her own pace. I then walked back very briskly to the house to get back by noon! I honestly feel like a gerbil on a wheel today! 


On Friday, my dad's occupational therapist taped his back. The goal was to help with my dad's posture. As his head, neck, and shoulders are hunched downward.... really hurting his center of gravity. Kinesio Tape is a special kind of flexible, elastic tape that is water resistant and can be worn for many days. It looks and sounds a little bit like athletic tape, but where athletic tape works to limit the range of motion and support muscles, Kinesio Tape doesn’t limit the range of motion. It actually facilitates motion and reduces pain. It stabilizes the muscles and joints.

In any case, my dad was supposed to wear the tape for five days! Today is day three and we had to remove it immediately. It caused redness and blistering. I had to pop blisters today and cover them with antibiotic cream. It just doesn't end. Then my dad got some insect bites from sitting outside. The bites have swollen and the redness is climbing all over his leg. I am nurse, doctor, therapist, cook, housekeeper, book keeper, driver, scheduler, and you name it! I am the Jack/Jill of ALL TRADE!

I drove my parents to a lovely restaurant today, about 45 minutes from their home. I am taking them to such restaurants, because they will never drive that far when I am not here. Expanding their horizons is a good thing. In any case, we have visited this same restaurant a few days ago. We had Jack, the same waiter today. He is a love! He remembered us, and he said we are "memorable." I have no doubt! I am deeply grateful for kind and compassionate wait staff, who work with me and manage the many demands my dad dishes out at one time. 

When I drove back home, I stopped at CVS to pick up scripts for my dad, got gas for the car, and then continued doing more chores around the house, to prepare for my departure tomorrow. I am leaving the house at 5:30am on Monday to get to the airport in time. Totally not my hour, especially when already tired.