Friday, August 1, 2025

Friday, August 1, 2025

Tonight's picture was taken in July of 2009. This was a typical scene at the art therapy table if Mattie was around. He was like a moth to a flame! Mattie was surrounded by his friends Jocelyn (who also died of osteosarcoma) and Maya, along with Mattie's social worker (Denise) and the Magic Man (Bob). Bob devoted the year Mattie was hospitalized to teaching him the art of magic, and Mattie LOVED it. Magic made Mattie feel special and good about himself. That day, Mattie was performing a mini magic show at the art table! As Mattie's cancer treatment wore on, his desire to be social decreased dramatically. Yet magic enabled Mattie to engage with others and in those moments, he wasn't a kid with cancer, he was simply a KID!

Quote of the day: Love is knowing that your feet carry you to a painful place, and still go anyway. ~ Mitta Xinindlu

When we moved into our house in 2021, NONE of us could agree on what to hang on our large family room wall. I ranged from wanting to capture Mattie Miracle moments on the wall, to displaying some of the beautiful photography my husband captured over the years on our family travels together. My ideas were shot down, so I had to come up with plan B. 

That is when I proposed that we commission a local impressionist artist to capture landscape scenes of our gardens and the house's exterior. Everyone loved that idea. I had the wonderful opportunity to meet Kim Richards at the Vale Schoolhouse Annual Art Show in 2023. I actually have four of her smaller paintings in our home. Ironically these two 
paintings, my husband purchased for me to celebrate my birthday and our wedding anniversary in 2023. I saw them at the Vale Schoolhouse art show. They weren't featured together, I literally got them off the walls and put them together. To me they spoke to one another when they were placed side by side. When I look at these paintings now in my house, they remind me ALWAYS that my marriage and love were REAL! It had to be, otherwise, why stay together for 37 years?

Once my husband left in September of 2023, I paused this entire art project. My heart wasn't in it! Yet a year later, I wrote to Kim. Since we paid for half of the project already, I decided to move forward with two of the four paintings we originally commissioned. I am so glad I did! 

While my dad was in the hospital for two weeks, I finally took Kim's prints to the framer (if you are looking for great craftsmanship in Virginia... go to Frame Masters, and ask for Richard Best.... amazing professional and he knows his frames) and I got them back last week! Keep in mind it has taken me two years to manage this project. At first I was going to forget about all of it, but since I paid for half already and the paintings are stunning, I decided to make my vision a reality and find a way to get them up on the wall. Any case, while my dad was at his memory care center today, I spent hours trying to figure out where to hang these large paintings. I created orange paper templates of the paintings. Then spent the next several hours measuring the space, measuring again, dragging in ladders into the house, and getting my level out. I am doing this all alone. There is on one in the house holding the tape measure, no one giving me a perspective from the ground and the list goes on! However, I am not a novice to picture hanging on a wall. I have done it for all of my parent's moves in California and naturally always worked with my husband on hanging art in our own home. So I picked up many of his skills over the years, as truly I think one of the facts about myself is I always welcome learning new things! I absorbed all the ways my husband would prepare a space when hanging photos or art. Therefore he may not be with me now, but his knowledge has been transferred to this student over the years. 

I am still playing around with the template placement, as I want 18" to be between the window frame and the painting, 18" between the two paintings, and then 18" between the second painting and the balcony molding above. I will sit with this for a few days, and then begin the measurement calculations for J hooks on the walls. If you have an opinion about this layout or other insights, feel free to leave a comment. The framer encouraged me to get a professional to hang these paintings. But I decided that I did not want to pay someone hundreds of dollars to do something I was equipped to manage, I just have to take my time. I figure if I can single handedly manage this house, all our finances, and caregiving, then no way are these two picture frames going to stop me. 

Thursday, July 31, 2025

Thursday, July 31, 2025

Tonight's picture was taken in July of 2008. Mattie was six years old and we went for a walk on Roosevelt Island that day! Mattie loved the big rocks along the trail paths and climbed these rocks each time he visited. To me Mattie looked like the picture of health here, yet weeks later was shockingly diagnosed with cancer. 

Quote of the day: Treat every small victory like you just won the Super Bowl. ~ Lewis Howes

Today I decided NOT to give my dad any pain meds. NOTHING. No Oxycodone and no Tylenol. Only his back pain patch. I did not discuss this with him, because then he would perseverate on it, which would only be counterproductive. I feel the pain medication isn't a good match for my dad and if he could do without it, it would be better for him. Thankfully, transferring my dad out of bed was more manageable today as was getting him into the shower. YES he complains, but he isn't screaming in pain. So I view this as a small victory for the day. Don't get my wrong, I still have my hands full, but I feel more confident in my abilities to manage his physical needs. 

Once I get my dad into the shower and safely in his shower chair he typically can shower himself. I have everything lined up for him, from his shampoo to soap on a bath type sponge. Normally, while he is showering I can make/change his bed linens, and clean his bathroom. Prior to his hospitalization, my dad knew exactly what to do with shampoo and soap. Today, after ten minutes of my dad being in the shower, I looked inside and NOTHING had moved. This clued me into the fact that he has NO IDEA what to do with shampoo or soap anymore. So in essence I took a second shower myself today, as I got soaked, cleaning him in the shower. With each hospitalization, there is always a decline in my dad's cognition, which makes caring for him challenging. 

I did get my dad to his memory care center today. It was his first day back after three weeks away! After dropping him off, I did chores like grocery shopping. For the past three nights, my dad has refused to eat dinner, so I bought things like fresh bread to entice him to eat, as my dad is a big bread lover!

Literally when I woke up this morning, I said to myself, maybe after doing chores today, I can lie down a bit, in hopes of managing my intense migraine, which I have had since I hit my head while fainting on Monday. However, it never works out for me, because as soon as I came home and put away groceries and dealt with the laundry, my mom wanted to go out. 

I took my mom to Starbuck's, which is one of her favorite places to go! Keep in mind, I haven't been there for three weeks. As soon as I walked in, all the people behind the counter shouted out.... HI VICTORIA! Apparently they missed me and I told them why I was coming in! One of the people I talk to there is a young woman named Alex. She eventually wants to become a nurse. We talked about the complexities of life, but the importance of trying to find moments/glimmers in all the daily turmoil. I told Alex that coming into Starbuck's and chatting with her and all the other wonderful people behind the counter, brightens my day. Her response to me was..... some days I think what ever I do, doesn't matter. I told Alex..... this is not true. Her kindness, smile, and taking the time to talk to customers ALWAYS matters. They may not tell her, but I guarantee that is true, as it is definitely the case for me, as coming in and chatting with her and others provides me an escape, a moment of peace. She literally stopped what she was doing behind the counter and said.... thank you for telling me this, this made my day!

Remember I also know several regulars at Starbuck's. One of whom came up to me and said he missed seeing me the last three weeks! This fellow served overseas and has an amazing German Shepherd, who was a working dog! I connected with this furry friend immediately when I first met the duo months ago. 

While at Starbuck's I took one of the Foundation's research grant applications with me to read. Mattie Miracle awards many innovative research grants a year! One of the applications I was reading today fascinated me. Maybe it fascinated me because I could personally relate to the content (given my own predisposition to cancer, which I explained in yesterday's blog). The research pertains to investigating our Psychosocial Standards of Care with children who are genetically predisposed to developing cancer. They do not have cancer currently, but their probability of getting cancer is HIGH! Therefore, these children endure constant scans and assessments over the course of their entire lives. That may not sound like a big deal, but psychosocially it is huge! It is daunting knowing that at any point you could be diagnosed with cancer, it is like you are a walking time bomb. Of course the issue is there are NO psychosocial services for patients like this, because they don't have the disease. Yet these "patients in waiting" have chronic psychological distress, anticipatory anxiety and other life disruptions. When our Psychosocial Standards of Care were designed, they were designed for ALL children diagnosed with cancer. This research proposal would like to investigate extending the Standards to those predisposed to the disease. This study greatly resonated with me, and frankly until this was brought to my own attention (professionally and personally) it was no where on my radar scope. 

Wednesday, July 30, 2025

Wednesday, July 30, 2025

Tonight's picture was taken in July of 2009. Mattie was in the outpatient clinic with Anna, his physical therapist. Anna came into our lives very early in Mattie's treatment process. She was a God sent, as she built a great rapport with Mattie, was a creative thinker, and was committed to helping Mattie regain his strength and abilities. At that point in time, we thought Mattie had no evidence of disease and our goal was to help Mattie walk again so he could return to school in the Fall. The Fall never came, as Mattie died two months after this photo was taken. 

Quote of the day: Hearts can break. Yes, hearts can break. Sometimes I think it would be better if we died when they did, but we don’t. ~ Stephen King

This morning my dad had a physical therapy session. I am glad that the session took place at home rather than at his memory care center, because it was important for the therapist to see what I am up against at home. Given my dad is taking pain meds, the byproduct is constipation. That may not sound like a big deal, but these moments are like hell on earth with someone who has Alzheimer's! It entails constantly running to the bathroom, to attempt to go, and yet frustration when nothing happens. The whole physical therapy session was like this (running back and forth), and thankfully his therapist is a kind and very patient soul. In the middle of the session, I gave my dad a laxative, because I had to get a jump on this issue. I will never forget being in the ER for 12 hours during COVID with my dad, who was suffering from an impacted colon. So when my dad faces constipation, I do not wait for it to resolve itself. 

What I have deduced is there is a big difference between therapists who worked with my dad in the hospital versus therapists who know my dad over time and have worked with him extensively at home. Today I reviewed the methods taught to me in the hospital for my dad to get up the stairs as well as the strategy to get into the shower. I actually HATED both hospital strategies, mainly because they seem unsafe! What works in the hospital, in a controlled environment, actually looks quite different at home. Of course the biggest complaint I have is the therapists in the hospital never asked to see photos of our home, to understand the spaces I need to negotiate with my dad. Knowing the space, would have shown them that their strategies needed to be altered. Today's therapy session concurred with my perspective and we came up with ways to maneuver my dad safely around the house. To me this is frustrating because wouldn't it have made sense to have a family meeting in the hospital right from the beginning to discuss these logistical issues and hear my perspective? It is NOT how the system works, which is why the system truly is not family centered and ultimately not focused on the patient's best interest. 

Though I did not want to leave my dad today, I had a scheduled doctor's appointment in the afternoon. This was an important appointment with a breast specialist, that I did not want to reschedule. After last year's assessment with her, I learned that I am classified as having a 40% chance of getting breast cancer, compared to other women my age (who have a (9% chance). I know when I heard this last year, I was very upset, especially when given three options of care: 1) being scanned and monitored every six months, 2) taking medication that can reduce the chances of getting cancer, but of course there are potential side effects, and 3) having mastectomies. It is like the ridiculous to the sublime. It is much harder facing these conversations and decisions without my husband.  

The breast specialist was running late today. So I sat in the exam room waiting. I have been suffering with a terrible migraine all day and felt my stress level was over the top. When the doctor walked into the room, she apologized and told me it was a difficult day. I absorbed what she was saying, and then connected the dots. She deals with cancer and therefore, I knew immediately she had to have some tough conversations with patients. I remember those days all too well! As soon as I heard it was a tough day for her, I took several steps back in my mind. I became extremely patient and compassionate, because I knew several lives were altered and forever changed today after hearing their diagnosis! Knowing this, I had NO PROBLEM with the doctor running late! 

My doctor works from 7am to 7pm every day! She doesn't complain about this, why? Because this is a person who truly LOVES her job! She believes in getting to know the whole patient, not just talking numbers! In fact, she was telling me about her daughter who recently had to go see a doctor. My doctor was coaching her as to what to ask the doctor! Her daughter basically told her that NO DOCTOR wants to hear about how she is emotionally doing and this caught my doctor by surprise. I then said to my doctor..... your daughter is absolutely correct! Most doctors don't want to hear about emotional issues, but yet if they did, they have NO IDEA what to do about them! So in essence medicine today cares for a patient in a silo, in a compartment, only seeing a small segment of the whole person. Any case, my doctor said to me.... who is going to take care of me when I should need it? My response to her..... I hope if and when you need medical support or guidance, you find a doctor just like you. A doctor with compassion. She literally grabbed my hand and held it! To me this showed me the human side of this doctor, which means a great deal to me.  

Tuesday, July 29, 2025

Tuesday, July 29, 2025 -- Mattie died 805 weeks ago today.

Tonight's picture was taken in July of 2008. In fact, it was around July 4th! This was one of our traditions to visit the US Aquatic Gardens in early July, because this was when the beautiful lotus flowers were in bloom. Truly it was a magical experience and I always joked that this was the best kept secret in Washington, DC. As the Gardens are off the beaten track, behind a neighborhood! You would never know they were back there, unless you were purposefully visiting! Mattie loved this space, and since my parents were visiting from California, we took them to this glorious site! It is hard to imagine that only weeks later, Mattie was diagnosed with cancer. 

Quote of the day: Every night, I laid awake with your memories flooding through my eyes with the hope to be with you when sleep arrived. ~ Anmol Rawat

This morning, I had no idea how I would be feeling after yesterday's fainting spell. Getting out of bed was indeed difficult, as my ankle and leg hurt. I do have a black and blue on my forehead, between my eyes, but icing it has helped. Last night before going to bed, I used my trusty tennis ball. Anyone who has spent any amount of time with me, knows I go NO WHERE without a tennis ball. I learned this trick from my physical therapist YEARS AGO. The way to work out muscle knots effectively is to roll a tennis ball over them. Trust me it is painful, but it speeds up the healing process. This is how I have been able to manage my neck pain. If you recall I have had muscle knots and spams in my neck since June. While my dad was in the hospital, I decided to aggressively treat my neck. The tennis ball rolling was super painful on my neck, but over about a week, I noticed a massive difference. So my hope was to have the same effect on my ankle and leg. Of course, I am always thankful for Advil. Some days I couldn't function without it!

After I got up and fed Indie, I went directly to getting all my dad's pain meds. I now know how crucial it is to pre-medicate him before I attempt to get him out of bed. When I went into his room, he was practically falling out of bed. If I did not have the bed rail, he would have been on the floor. The problem with all of this is my dad is DEAD WEIGHT. He is unable to roll, unable to lift his body from the waist, and all of this makes it practically impossible to reposition him. Naturally I had to figure it out, because I couldn't get him to swallow pills without sitting upright. 

Once I accomplished mission impossible, I then went to get myself together, clean the first floor, and made breakfast. I proceeded upstairs to do my morning routine with my dad and get him downstairs before 10am, so he could have a nursing and physical therapy evaluation. If these professionals only knew what I had to do to accommodate their timing. Keep in mind I asked them to come later in the day, but they couldn't fit us in, so if I wanted my dad evaluated for services, I needed to comply with their schedules. 

When the physical therapist arrived, he thanked me for accommodating his schedule. My response to him, was I am used to accommodating everyone. I told him in my house the notion of the caregiver putting on her oxygen mask first before helping anyone else doesn't exist! It doesn't exist, because for me there is no oxygen mask available. My main oxygen mask left me on September 23, 2023. The therapist got my point of view about the oxygen mask (an analogy that is way overused and ineffectual with caregivers) and then after assessing my dad, he completely understood what I am balancing. Keep in mind that I know this therapist well, as both of my parents have used this in-home healthcare company (which provides nursing and PT) over the last three years. I was referred to this company through my dad's memory care center. I mention this because this therapist knows that typically my dad doesn't express pain. Now it is very clear my dad is in pain. The physical therapist encouraged me to get down to the bottom of this pain, even if that means advocating for an MRI. 

After my dad had his assessments, I decided to contact his rehab doctor and his cardiologist, as the hospital asked me to make follow up appointments after my dad's hospitalization. So I called both offices and only landed up with MORE frustration. Want to know when the first available appointments are..... try November! I literally lost it on the phone! I explained to them that my dad has been in the hospital for two weeks and needs post care evaluations. Waiting three months for this to happen is unacceptable. By the time I finished with both offices, they connected me with their office managers, who magically have the ability to change schedules around! So I am telling you this for your own edification! 

During my dad's hospitalization, his blood pressure medications were completely changed and I want an appointment with his actual cardiologist to discuss this, which meant that I refused to see a nurse practitioner or another physician. That may sound ridiculous, but in all reality I have learned with my dad that it matters to have the consistency of one provider who knows the nuisances of his condition. After the last hospital discharge, I complied and saw a cardiology nurse practitioner. Big mistake. She put my dad on a statin, despite me telling her my dad is allergic to statins, and I was left to manage the horrible side effects. So now NO, I will not be flexible with providers because it isn't in my dad's best interest. If you want to know why I was nicknamed the "bull dog" in my dad's latest hospitalization, it is for a reason. If you are under my care, I will do whatever it takes to ensure that everything medically possible is done to ensure stability and healing! So it is okay, I wear my "bull dog" title with honor!

I did take my parents out for frozen yogurt today. This is an easy journey outside the house and something my dad likes. When I returned home, a terribly tired feeling came over me. So I went upstairs to sit on my bed for a while, Indie was right by my side, and I actually napped for 45 minutes. That may not sound like a big deal, but for me (a person who never naps) this was huge. It is my hope that my dad can return to his memory care center on Thursday. Overall, with each hospital admission, I see another decline in my dad both mentally and physically. My dad can no longer remember anything (past or present). He doesn't remember being in the hospital, falling, needing six paramedics to take him down the stairs, or even anything that happened today. In addition, he got used to hospital foods and now refuses the food that I cook. His appetite is minimal and my mom is worried about him. As for me, I take it one day at a time, because if I looked at the bigger picture of my life, I would never get out of bed in the morning.  

Monday, July 28, 2025

Monday, July 28, 2025

Tonight's picture was taken in July of 2007. Mattie was five years old. That summer, I enrolled Mattie in group swimming lessons. It was an indoor pool, and the recreational center's policy was that parents were NOT allowed by the pool. We could watch from an observation window upstairs. Which was why I captured this photo at this angle! Overall, I would say that Mattie was very cautious about water and swimming, but he made great strides in this class and I am happy I never missed any of these precious moments.  

Quote of the day: Heat exhaustion and heat stroke are both serious heat-related illnesses, but heat stroke is far more dangerous and potentially life-threatening. Heat exhaustion is characterized by a core body temperature below 104°F (40°C) and symptoms like dizziness, headache, nausea, and weakness. Heat stroke, on the other hand, involves a core body temperature above 104°F (40°C) and can cause confusion, seizures, loss of consciousness, and even organ damage. 

When I think my days can't get worse, I rise to the occasion. As I awoke, I saw that I had a text message from Steve, the fellow who works for my landscape company. Steve helps me with all things outside of the house. Truthfully there is nothing he can't fix. Steve was coming over to fix my backyard gate, which was broken by the mowers about a week ago. Steve had to specialty order hinges for the gate. I literally hopped out of bed and started getting myself together, the cat fed, and my dad medicated with his pain meds. I need to medicate my dad almost two hours before getting him out of bed, otherwise, the process will be excruciating. 

Steve arrived at 8:30am, and I went outside to chat with him. He is a multiple trauma survivor and therefore, we literally speak the same language. If you are thinking there is a romantic connection between us.... WRONG! I still wear my wedding ring and in my eyes, and that of the Catholic Church, I am still married. In addition, Steve has a significant other. We do not relate to each other in that way, we relate to each other however, as two people who have had numerous hardships in life, and we can appreciate each other's journey. 

While talking to Steve, I was under a shaded tree, but all of a sudden, my mouth felt like cotton, a got a massive headache, was sweating, felt nauseous and I knew I wasn't well. I suggested to Steve that we go into the garage so I could get water out of the refrigerator. Steve followed me, and somehow I got the garage door open and had my hand on the refrigerator door handle. At that point, Steve said, I wasn't acting right and started to faint. I think I hit my forehead on the door handle (as I have a black and blue), and my left ankle buckled underneath me. I was about to fall backward and would have, but Steve caught me. He lowered me to the garage floor and there I stayed with him for thirty minutes. I have never fainted in my life, today was a first. 

I knew exactly what was happening to me because my husband has been a victim of heat exhaustion multiple times. In fact, when we were dating, we went to Sea World in San Diego in the 1990s. While there, we sat under a tree, and Peter literally tipped backwards and passed out. The heat had gotten to him, but typically I do not respond to heat this way. However, I think my body and mind are on overload! I am working around the clock, under a great deal of stress, and then combined with heat, it was the perfect storm. 

When I got back in the house, it wasn't like I could lie down and take care of myself. NO! I had to make breakfast and do my morning routine, which also included getting my dad up, showered, dressed, and downstairs. In addition, I had a scheduled bone density scan at the hospital around noon. I made it safely to the hospital and actually took many deep breaths and closed my eyes during the bone scan. 

I returned home and I decided to take my parents out for frozen yogurt. I had to see if my dad had the energy outside the house and to see how he ambulated! The manager at our local frozen yogurt store is a love. Her name is Jennifer, and she and I were both born on July 25. She wrote to me on my birthday and I told her my dad was in the hospital. She was thrilled to see us today and gave my dad his yogurt for free. When I left, she came over to me and said MAY GOD WATCH OVER YOU FOR WHAT YOU DO EACH DAY! I can't tell you how much that meant to me!

This was today's surprise at my doorstep. My friend Heidi sent me a tea infuser and a whole bunch of wonderful teas! I am very excited to have a infuser and can't wait to start brewing tea tomorrow! I would have to say my two favorite things in the world are tea and sweets! Very grateful for having the best of friends. 

Sunday, July 27, 2025

Sunday, July 27, 2025

Tonight's picture was taken in July of 2007. Mattie was five years old. That day, Mattie attended his preschool friend's birthday party! It was a gymnastics party! Mattie was one of about three boys! But Mattie LOVED it, he got into it and was following along! As you can see Mattie loved the color orange, which is why this is the official color of Mattie Miracle. 

Quote of the day: Everything that slows us down and forces patience, everything that sets us back into the slow circles of nature, is a help. Gardening is an instrument of grace. ~ May Sarton 

It was a very challenging morning. Actually challenging doesn't do my morning justice. My dad's physical therapist warned me that mornings are HARD! Which was probably why she insisted that my dad have a dosage of oxycodone before getting out of bed. NOW I GET IT! This morning, after feeding Indie, I came back upstairs with the goal of helping my dad to the bathroom and then back to bed until I was ready to start his morning routine. Trying to get my dad out of bed was like hell on earth! He was screaming in pain. Mind you my dad is a big man, I can't move him, and he can't move himself! My dad has never been able to roll on his side, which is typically how we all get out of bed. But in addition to this he can't lift his head off the pillow, and he can't move his legs. This is because he fell on his back on July 11. It felt like I was trying to lift dead weight, but the dead weight was screaming. I finally got him out of bed and to the bathroom. While my mom was watching him, I ran downstairs to get his back pain patch, his oxycodone and Tylenol. Ironically my dad's nurse was a God sent yesterday! She basically said... fill all the scripts! You may not need them or want to use them, but if you DO need them, you will have them! THANK YOU LARA!

I got my dad medicated and back to bed with the hope that 90 minutes later, I would be able to move and shower him. But getting my dad back into bed was equally horrific. It was so difficult that I had to literally stand on the bed in order to have leverage to push his back forward in order to shove pillows behind him. It was a nightmare and I literally said to myself..... if this is as good as it gets, I will not be able to care for my dad. 

After I got myself together, cleaned up the first floor, and made breakfast (because my mom was waiting for it), I went back upstairs to attempt to move my dad and get him in the shower. With the pain meds on board, it was challenging, but far more manageable. At the hospital my dad's occupational therapist, who I disliked, taught me how to do a shower transfer! Keep in mind she never asked to see our home set up! I kept telling her that our shower door is too narrow for my dad to walk in side ways with the walker. She wouldn't listen! But I was correct, it doesn't work! So I had to come up with plan B. 

Despite being the hospital and given several showers, my dad needed to be thoroughly cleaned! Once showered, and dressed, I had to get my dad downstairs. I was concerned that down the stairs was going to be as bad as up. But down was super easy! In fact, I saw no difference from now compared to before hospitalization. It is up that is difficult, because at the end of the day my dad is tired.

I was hoping I could send my dad back to his memory care center tomorrow, as the doctor cleared him to return. But my dad has slept the entire day away. He was only awake for meals and two, three minute walks. He has no energy and I do not feel comfortable sending me out of our home, until I know he is more stable. I truly hope it gets better with each day, because right now managing his pain is very difficult.