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

July 4, 2020

Saturday, July 4, 2020

Saturday, July 4, 2020

Tonight's picture was taken on July 4 of 2003. Mattie was 15 months old and it was his first time visiting North Carolina and the beach. He was very cautious and suspect of the Atlantic Ocean! Mattie's hands were like little radar scopes. When he made a fist, that was my sign that he wasn't ready to explore and take in his surroundings. If the hand was open and the fingers fanning, that meant Mattie wanted to engage and learn more. The many wonderful signs of Mattie. This photo is still priceless to me. 





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


  • number of people diagnosed with the virus: 2,836,113
  • number of people who died from the virus: 129,654


I got up this morning at 6:45am. That is the latest I have gotten up in a month. My thinking was that no caregivers or therapists were coming today, so I did not have to have everything ready by 8am. My hope was for a more stress free day! What a joke. 

I got up, made the bed, showered and dressed. Then I went downstairs to start making breakfast for my parents. After which, I went upstairs and woke my dad up and began the morning process.... picking out clothes, getting him up, showered, dressed, and to help him downstairs. My mom is trying to learn the morning routine I have with my dad, and of course any time I train someone the process takes twice as long than if I did it myself. 

As we were helping my dad down the steps this morning, he swayed forward and became imbalanced. I have not seen this happen before in the entire month I have been here. But what I do know is he would have fallen if I did not catch and prop him up. I can't explain why he was off balance and of course he has no insight on the process. Therefore, it adds to my concerns. As I can handle my dad physically, but my mom can't. 

While my parents were having breakfast. I went back upstairs to strip their bedding to launder it and collected all my dad's towels from showering. After which, I sat down to eat breakfast. Peter ran chores and at breakfast, my dad wanted to know if anyone was coming today..... meaning caregivers or therapists. When I said 'no,' I qualified it by saying 'they may not be coming, but that doesn't mean there will be no routine or exercises.' The notion of exercising sent him over the edge and he got hostile with us. I don't mean just hostile, I would say rude, cursing, and got up from the table, leaped for his walker and stormed out of the room. All dangerous as he could have fallen in the process. There was no reasoning with him. Despite our best efforts to explain the importance of movement and exercise, he deems our requests as us "torturing" him.  

It is hard enough managing daily caregiver needs, but it is ten times harder when the person you know is no longer the same person. It is emotionally draining and this would be hard to manage if we were living in the same town, but it is next to impossible being 2,500 miles away. As I leave my parents on Tuesday to return home, I feel like I am watching a train wreck in slow motion. The train is going to derail, it is just a matter of how soon. I will return again this summer, but there are things I must do at home, and poor Sunny and Indie, left without us for a month. 




July 3, 2020

Friday, July 3, 2020

Friday, July 3, 2020

Tonight's picture was taken on July 4, 2006. We were invited by Mattie's good preschool buddy, Zachary, and his family to watch the National fireworks show from their boat. It was our first and last time on the Potomac River for Independence Day. Mattie had a wonderful time and Peter and I found it fascinating how many people are on the water for the holiday. 

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

  • number of people who were diagnosed with the virus: 2,793,022
  • number of people who died from the virus: 129,405


I got up this morning at 6am. I got myself showered, dressed, made the bed, and was about to start breakfast. When I got a call from the caregiving agency letting me know that my dad's caregiver needed an emergency root canal today. Thankfully I was here and could take over the care for the day. Naturally if I were not here, the agency would have sent another caregiver. Given that I trained three people in a week's time, they did not want me to have to repeat the process today! Which I appreciated! While training people this week, showering and dressing my dad took anywhere from an hour to 90 minutes. Whereas, when I go it, I can get it all done in 30 minutes! 

Which was a good thing, because my dad had a wound care appointment today at around 9am. The physician's assistant and his assistant came to the house, but I wanted my dad washed, dressed, and with enough time to eat breakfast and take pills before they arrived. It was a successful morning and we got it all done. 

The wound care specialist was lovely. He "debrided" the wound. A NEW term to me. Wound debridement is the process of removing dead tissue from wounds. The dead tissue may be black, gray, yellow, tan, or white. Wounds can heal faster if dead tissue is removed. Dead tissue can trap bacteria. Bacteria may lead to wound infections. Bacteria can cause odor. Wounds that have dead tissue take longer to heal. New tissue cannot grow.

This is a photo of the debrided wound. I asked the specialist how this developed and he said from being sedentary and malnourished. Thankfully my dad is eating again, but during the COVID-19 lock down, he lost his appetite and refused to eat anything other than cereal. If you have been following along, then you know my dad lost 30 pounds during Covid, refused to eat, and developed a urinary tract infection, a kidney stone, and an impacted colon. He was hospitalized twice, dealt with persistent hiccups for a week, and also had delirium. It has been a lot to manage and given how I found him on June 9th, he is more stable now. But with that said, my dad needs constant support and supervision and of course we are all saddened by his massive cognitive decline. A decline that I hold quarantine from Covid-19, a urinary tract infection, and being on Thorazine for a week to treat recurrent hiccups personally responsible for! In fact, if I did not intervene, my dad's doctor would have had him on Thorazine for longer. Instead, I researched persistent hiccups and suggested the doctor give my dad Baclofen! Which worked in one day's time! You have to be your own doctor. But I learned this the hard way from Mattie!

July 2, 2020

Thursday, July 2, 2020

Thursday, July 2, 2020

Tonight's picture was taken in July of 2008. We took Mattie to the Aquatic Gardens in Washington, DC. Every July the lotuses bloom and are glorious to see. It was an annual tradition. This was a park Mattie loved to visit. Notice that Mattie was holding a toy car in his left hand. Not unusual as Mattie never traveled empty handed. 


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

  • number of people diagnosed with the virus: 2,732,639
  • number of people who died from the virus: 128,651


Don't ask me what happens in the morning around here! I wake up around 6am, make the bed, shower, dress, prep breakfast, and then greet one of my dad's caregivers at 8am. When she arrived today, we went upstairs and greeted my dad. As we were coming up the stairs, my dad managed his way out of bed and was headed toward the bathroom. I walked the caregiver again through the process. We picked out clean clothes for him and proceeded with the showering routine. After which, we lotion and dressed him and supervised him walking down the stairs to the breakfast table. While having breakfast with my mom, the caregiver and I went back upstairs to collect towels and clothes for the wash, and made the bed. 

After breakfast, we encouraged my dad to do his occupational therapy exercises. He always fights us on this request, but he did his six exercises and then rested for an hour before his physical therapist arrived. We try to have structure to my dad's day because if not, he most likely would sit or sleep the day away. Having a routine keeps him up and moving at times, which is important for both his physical and mental health. 

My dad's physical therapist had him walking with a cane today, rather than a walker. Naturally he had a gait belt around him and held it throughout all the exercises. If my dad got off balance or began to fall, the therapist would be able to support and catch him. Of course all this exercising is physically taxing and my dad reports constant exhaustion. In fact as soon as his shower is over, he tells us he is very tired. So we are fighting his chronic exhaustion and his lack of motivation to do any activity or comply with his home exercise program. He constantly tells us we are "beating him up." Which of course is not true, but in his mind, this is how he interprets what we are asking him to do for his own health and recovery. 


All I know is that from the moment we wake up and until we go to bed, we are focused on something. My dad's caregiver is here from 8am to noon. At noon, my dad is resting until we are ready to go out of lunch. I am very aware of the challenges we are facing with the pandemic, but I have to weigh the consequences of not going out. Which would be my dad won't eat and consume fluid. That would lead to a direct failure to thrive, which was how he was diagnosed in May. In older adults, failure to thrive describes a state of decline that is multi-factorial and may be caused by chronic concurrent diseases and functional impairments. Manifestations of this condition include weight loss, decreased appetite, poor nutrition, and inactivity.

On Tuesday, I will be here for one month. We accomplished a lot in a month. Because when I arrived in LA (June 9), my dad hadn't moved from his recliner chair since being discharged from the hospital on June 3. He was wearing the same clothes for a week, and was using a urinal from the chair and not getting up to go to the bathroom. It was a bad sight, on top of which he also had delirium (serious disturbance in mental abilities that results in confused thinking and reduced awareness of surroundings). He refused food and liquid. Since that time, we have definitely made progress. Having structure, a routine, and expectations are important for us at all ages... but they are even more important as we age. 

July 1, 2020

Wednesday, July 1, 2020

Wednesday, July 1, 2020

Tonight's picture was taken in April of 2002. Mattie was only a day or so old. Since I was recovering from an emergency c-section, Peter took over all of the caregiver duties. In fact, he was the first one of us to ever change Mattie's diapers. I think this is a precious photo that captures the love of a great dad. 



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

  • number of people who were diagnosed with the virus: 2,678,202
  • number of people who died from the virus: 127,970

Last night was another night for the books. By 9pm, my dad was moaning in pain. Again, I could see he was constipated. I will remind my readers that I took my dad to the ER on June 16 because he had an impacted colon. I knew the situation wasn't as serious this time, but that I had to act quickly before it became a crisis. Now one would think that a gastro-enterologist would counsel a family of an older patient, who is sedentary and brought into a hospital with an impacted colon. Counsel us on a laxative regimen! Unfortunately as I learned all too well the health care system is fatally flawed. They may be good at dealing with a problem at hand but TERRIBLE at maintenance and prophylactic care. So when my dad was released from the hospital on June 20, no bowel regimen was provided in the discharge notes. With COVID-19, family caregivers have no interface at all with the hospital staff, therefore, if its not in the discharge paperwork, it doesn't exist. 

Since discharge on June 20, my dad has had minuscule bowel movements daily. Maybe something that looks like the size of a quarter. In fact, every time he had to use the bathroom, a nugget size bowel movement appeared and in the midst of all of this my dad was developing bad to severe gas pains. On Monday night of this week, I called the after hours number for my dad's gastroenterology practice. The doctor on call responded and it was this doctor that talked with us about a daily laxative plan! Where was my dad's doctor? Asleep at the switch! I can say this with confidence because my dad and mom saw their doctor last week in the office (I wasn't allowed back into the appointment, which was a big mistake). At no point in that visit was a laxative plan prescribed! Shame on him!!! 

Any case, last night, my mom called the practice and we spoke to another on call doctor. He understood the severity of the problem and suggested I give my dad two enemas and more senakot. I did administer two enemas, but with age it is hard to hold the fluid in for it to do its magic. So instead, after I inserted it, my dad passed the fluid right back out! It was very frustrating. I helped my dad back up out of bed (a bed which I lined with plastic sheets and chuc pads in preparation for a lot of pooping) and dressed him because I was going to take him to the ER at 10pm. After I dressed him, he said he had to go to the bathroom. It was at that point, he began to poop. In fact, he pooped during the night and had a massive bowel movement today. It was like winning the lottery. My dad told us after he woke today that he had bad dreams about having to go back to the hospital. So clearly all of this has created great anxiety. 

On top of all of this, I was up at 6am. We met a new (the third) caregiver today and trained her on my dad's routine..... getting him up, showered, dressed, given breakfast, and we did his physical therapy exercises together. Later in the morning, my dad's occupational therapist came and my dad did more strength building exercises. So my dad has had a full day, and we are right along side him. 

The challenging part of all of this is my dad doesn't like eating at home. I mean NOTHING! He prefers eating in restaurants. This would be challenging under the best of circumstances, but now with COVID, you have to be a miracle worker. For over three months my parents lived in quarantine. During that time, my dad lost 30 pounds, because he lost his appetite and desire to eat. In addition to losing a dramatic amount of weight, he also developed a urinary tract infection, a kidney stone, and his dementia advanced significantly. I blame COVID-19 for my dad's significant decline as getting out into the world is vital for his psychological, social, and physical health. 

When Peter and I arrived in LA in the beginning of June, we began to take my parents out to lunch. We only go to three restaurants we know and trust. Don't you know it, as my dad started going out to eat, he began eating and is now regaining weight! We are careful and are being safe. Yet today, Governor Newsom once again CLOSED inside dining of all restaurants in LA County! Honestly!???? I think our leaders want to kill us, because if COVID doesn't do it, then the psychosocial impact of lock down and quarantine definitely will. 

June 30, 2020

Tuesday, June 30, 2020

Tuesday, June 30, 2020 -- Mattie died 561 weeks ago today.

Tonight's picture was taken in August of 2005. That day we took him to Griffith Park in Los Angeles. A park filled with all sorts of activities for children and adults alike. Mattie was three years old and we wanted him to try a pony ride. It wasn't like this pony could go anywhere, as he was teetered to a wheel. Nonetheless, Mattie was cautious about trying it so Peter walked besides him and the pony. From Mattie's facial expression, I can see that he was trying to smile, but felt a bit anxious on the pony. 


Quote of the day: Today's coronavirus update from Johns Hopkins
  • number of people who were diagnosed with the virus: 2,629,372
  • number of people who died from the virus: 127,322

Another early morning here. Peter and I arrived in Los Angeles three weeks ago today. A lot has happened in three weeks. We packed up my parents home, moved them to a new home. Unpacked and organized everything, worked on getting utilities and major things connected and with updated addresses. All of this was exhausting. But add a health crisis on top of this, and all I can say is wow. During this three week time period, we also took my dad to the ER, he was admitted and spent five days in the hospital. It has been a lot to balance and Peter and I are working around the clock to get things stabilized here. Which is why we postponed our flights. We were supposed to fly back to Washington, DC today. But I assessed where what was happening last week, and decided there was no way we could leave. Especially as caregiver were being assigned to work with my dad during the day, and I wanted to meet them myself and see them in action. 

So far I have met two out of the three caregivers. I have gotten to know my dad's nurse (who comes once a week) and my dad's physical and occupational therapists (who each come twice a week). Since I live so far away, it is important that I know the cast of characters and they know how to directly reach out to me. But there is a lot to juggle here. As my dad needs constant support and in the midst of this the phone keeps ringing with doctors and other appointments. I am so tired that if I stop moving, I fall asleep. 

I have been trying to get a hold of my dad's GI doctor today. This is the same office that we visited last week and I screamed at the receptionist because of her lack of sensitivity. As she wouldn't allow me to go with my parents into the doctor's appointment because of COVID-19. She said only one family member was allowed back into the exam room. I get it, but we were the last appointment of the day and no one else was in the office. My presence in that meeting would have been important. The way this GI doctor's office is run is poor at best and it is close to impossible to talk to a live person!! I called the office in the morning and left two messages. I called back in the afternoon and left a third message. It is now 6pm, and still no call back! I think this is unethical and criminal! What kind of doctor's office is this? 

The reason I called was the discrepancy in medical advice as my dad's doctor prescribed one thing for a bowel regimen and the on-call doctor last night gave practically the opposite of advice. Needless to say, I can see my dad is getting constipated again, and we need a solution that will prevent this from happening and developing into a crisis. Meanwhile, the third caregiver arrives at 8am tomorrow. So this is my third training in one week's time! Training takes time, energy, and patience. Patience which is rapidly dwindling within me!

June 29, 2020

Monday, June 29, 2020

Monday, June 29, 2020

Tonight's picture was taken in August of 2005. Mattie was three years old and we took him to Los Angeles to visit my parents. It always took Mattie a few days to adjust to the three hour time difference and literally he would be up at 4am, unable to go back to sleep. So we had some very early mornings! Which meant that Peter and I were up and starting the usual morning routine of breakfast and playing. At some point, Mattie took one of his toy boxes and decided to parade around the house with it on his head! The beauty and whimsy of Mattie!





Quote of the day: Today's coronavirus update from Johns Hopkins
  • number of people who were diagnosed with the virus: 2,587,154
  • number of people who died from the virus: 126,127

Another 6am morning. Today the second caregiver assigned to work with my dad arrived at 8am. I get up early so that I can shower, get dressed, and start breakfast for my mom and me. Peter is good at taking care of himself, so I don't worry about him. When today's caregiver arrived, I had to start all over again. With training about getting my dad up, helping with toileting, and the whole shower process. Of course in the midst of all of this, there are chores like emptying urinals, making the bed, doing laundry, etc. So I had to review this whole process with the caregiver. Today's caregiver was a night and day difference from the one over the weekend. This lady was quiet, yet competent, attentive, and wanted to understand the dynamics of the family. 

Last night, while in bed, I realized that I hadn't given my dad his evening pills. One of which was a blood pressure pill. Needless to say, I won't be making this mistake again. It was a complete oversight, only because I am managing SO MUCH. Let me remind my readers that we moved my parents into their current home LAST MONDAY and TUESDAY. A move is hard enough, but with a health care crisis, good luck. In the month I have been here, I have missed one dosage of medication, which I think is remarkable. 

Yet when my dad's PT got here today, my dad's blood pressure was so high, that therapy wasn't allowed to be performed today. The therapist had to report the high pressure to the health care company, which sent the info to my dad's doctor. You can imagine how these people made me feel today. No one has any compassion for the caregiver. At all! It is disheartening and it is 7pm and I am ready to scream. 

As my dad is experiencing constipation again, the same thing that landed him in the hospital on June 16th! I just called the doctor and I have no idea what the evening will hold for us! I literally feel this situation is critical at best and that my dad needs round the clock supervision and support. 



June 28, 2020

Sunday, June 28, 2020

Sunday, June 28, 2020

Tonight's picture was taken in August of 2007. We were staying at a hotel in San Diego and I am quite sure I snapped this photo because this was a rare sight! Mattie was in his pajamas and sitting still. It took a lot to wear Mattie out, and my joke was he had two modes.... on and off. Nothing in between. 









Quote of the day: Today's coronavirus update from Johns Hopkins
  • number of people diagnosed with the virus: 2,548,143
  • number of people who died from the virus: 125,793

It was another day in paradise. I am being facetious, if you can't tell. The caregiver assigned to work with my dad yesterday returned today. Yesterday, she seemed refreshing and today she was grating, bordering on inappropriate. Why? Besides the fact that she thinks she knows better and wants to correct us on how we do things in our own home, she is non-stop chatter. Chatter that focuses on herself. You know the kind of talk that can give you an overwhelming headache? This is her. I could potentially put up with all of that, but then she is working hard to recruit us away from the caregiving agency we signed a contract with in order to work with her independently. Naturally, she would get more money if we paid her privately. But there are many problems with her suggestion! First of which is we signed a caregiving agency contract and hiring a caregiver privately who we found through the agency, would result in a $25,000 fine. Putting the fine aside, it makes no sense to put all your eggs in one basket. As people get sick, things happen, and what would happen to the continuity of care for my dad if we worked with ONE caregiver privately?

Of course my main objective is she is SO BUSY promoting herself, that she isn't diligently doing her job. She started laundry for my dad. But never put it in the dryer and folded it. What good is it if you just throw it into the washer and leave it there? The consequence is MORE WORK for my mom. I told her it was important to through out the garbage, she did not do that either, and I landed up adding that task to my already full day. Needless to say, I wasn't happy with her today and this translates directly to the caregiving agency. I tried to reach out to them today, with no avail. They were great at responding to all my messages before we signed a contract. They are not as attentive now! 

Meanwhile, a new caregiver shows up at our door at 8am tomorrow. There is NO cross training! So guess who has to start from ground zero? Correct, that is us! Frankly, I am not sure what is worse.... doing all the work yourself or having strangers come into your home and have to endure all those complexities? Prior to seeing long term care insurance (LTC) in motion, I was a big LTC fan. Now I feel like there are ways adults can save for their aging needs without the impersonal regulation of an insurance company. I don't do well with big brother standing over my shoulder telling me who and how long I can hire someone to help me. Any time government or businesses get involved in regulating our health care, problems arise. 

Any case, tonight I can say we are chronically tired, frustrated and stressed out. We would love my dad to bounce back to the way he was prior to hospitalization, but unfortunately this isn't the case. How we long for the days when he was more independent and more like himself. It is very hard seeing this transformation as my dad is pervasively tired, at times confused and disoriented, and has difficulty with every day activities. Aging is not for the meek. Case in point, the caregiver today was having a side bar conversation with Peter, while my mom was standing in the room. As if she did not exist or couldn't make decisions. Both of which are false. Naturally my mom found this offensive and it leaves me wondering why our society makes such false assumptions about older adults. 

Tired, disillusioned, and no end of work in sight. Leaves you feeling rather depressed about every aspect of life.