Saturday, November 27, 2021

Saturday, November 27, 2021 

Tonight's picture was taken on November 21, 2008. It was nine days post Mattie's second limb salvaging surgery. He had his left arm and right leg in a cast. His right arm was recovering from his first limb salvaging surgery. So the only limb unaffected by cancer was Mattie's left leg, AKA Curious George. Mattie's leg got this nickname, because his leg and toes acted like an arm and fingers. It was remarkable and Mattie's spirit and ingenuity were awesome to watch. 

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

• Number of people diagnosed with the virus: 48,201,602
• Number of people who died from the virus: 776,509

The boys on the Farm! Today's photo was sent to me by Peter. Selfies with Sunny. 

Yesterday, I went with my mom on a walk in the neighborhood. So many of the houses are decorated for Christmas. Check out this giant snowman. He is lit up with a light show at night. 

This house is transitioning from Thanksgiving to Christmas. 

Joseph Lilley, the music director at Paramount Studios was famous for composing, arranging and scoring the music for the movie, White Christmas. Lilley lived in this house from 1954-1971. They say the cast party to the movie took place at this house. This house isn't far from where my parents live, and I just love walking passed it!

To learn more about the current owners and their incredible dedication to a Christmas display each year, go to: https://spectrumnews1.com/ca/san-fernando-valley-ventura/news/2020/12/07/scenes-from-christmas-past-light-up-popular-lawn-display-in-toluca-lake#

Last evening, I took my parents out with their friends for my mom's birthday. 

Marie, my mom, and me. We have known Marie and her husband for over thirty years. 

I spent some time in my parent's pantry today. I cleaned out some of the items, but check out the paper supplies. If you want to know where napkins, toilet paper, and paper towels are..... I have them!

I served Thanksgiving leftovers today. Somehow putting this together was even harder for me and more tiring that cooking the original Thanksgiving meal. I have no idea, but I feel like I could put my head down on the table and sleep. Tomorrow I am taking my dad to his hair stylist. She is going to teach me how to cut and care for his hair. Nothing is easy though, as I have to take him to her and work around her schedule. 

Friday, November 26, 2021

Friday, November 26, 2021 

Tonight's picture was taken in November of 2008, the day after Thanksgiving to be specific. Mattie and Peter had a tradition of putting up Christmas lights in our commons area. Our neighbors really loved the displays over the years and commented how we brightened up their December for them. Though Mattie was home between treatment, Peter kept the tradition. That day, they went to Home Depot and came back with a new addition to the display..... a Great Dane, just like Scooby Doo. 

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

• Number of people diagnosed with the virus: 48,163,018
• Number of people who died from the virus: 776,280

Peter shared some more photos with me. This is our Goddaughter Charlotte with Sunny! 

Peter and Charlotte on Thanksgiving. With Mattie's Mr. Sun painting in the background. 

My mom snapped this photo of me with our friend Phyllis. I am very grateful for Phyllis' help. As she works with me to put all the food away, get all the dishes cleaned, which makes it much easier for me to put them away. Not everyone is eager to help in the kitchen, but Phyllis and I have a routine and we talk the chores away. 

My mom snapped a photo of me setting up our buffet island of the Thanksgiving feast. 

Phyllis captured our island of food. This is the third time I have carved a turkey myself. The first two times did not go well. This time, it was much better and I was able to find the joints of the legs and wings. I served:

• turkey 
• gravy 
• fresh cranberry sauce
• carrots with orange juice, cinnamon, and nutmeg
• green beans with mushrooms, bacon, lemon zest and marjoram
• stuffing made with sourdough bread
• sweet potato souffle 

My mom and me. 

Last but not least, an amazing chocolate cake. It is a great recipe. The cake is moist, not dense, and not sickly sweet. 

This morning when my 6am alarm went off, I wanted to stay in bed. No such luck, as I have to get up, dressed, and functioning before my dad's caregiver shows up. 

A physical therapist came over today to work with both of my parents. This evening we are going out because today is my mom's birthday.

Thursday, November 25, 2021

Thursday, November 25, 2021 

Tonight's picture was taken in November of 2008. Mattie was home between hospital treatments and his school counselor gave him this cute turkey hat for Thanksgiving. Mattie decided to put it on his head and of course I snapped a photo. I absolutely love Mattie's smile and expression in this photo. So glad I was so picture happy!

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

• Number of people diagnosed with the virus: 48,122,430
• Number of people who died from the virus: 775,759

Today's I am highlighting Thanksgiving in two places. Peter is back in Oakton, VA with his parents, and our friends. Their daughter, Charlotte is our Goddaughter. She is five years old now. As you can see Sunny is right in the mix. 

Peter set up a buffet in the kitchen. 

Cooking a turkey in our house's oven had to be a feat. As it takes an hour for it to come up to temperature, it is 25 degrees off, and also doesn't keep its temperature. Fun!!! 

Looks like everyone had a good time!

Meanwhile, I got up at 5:45am today. I always give my dad's caregiver the holidays off. So I got him up, washed, dressed, gave him breakfast, did his cognitive exercises, and his walking routine with him. Last night, we had a wind storm in Los Angeles. Leaves and branches were everywhere. My dad wanted me to sweep the front and back. So I added that to my list. 

Then I got to cooking more sides. This is a modern day take off of spring bean casserole. However, I like it much better and it features lemon zest, marjoram, and bacon. 

I set up a buffet in the kitchen. 

Our California Thanksgiving day table. I will post more photos tomorrow. My thoughts are with all our family, friends, and supporters. We are thankful for you. 

Wednesday, November 24, 2021

Wednesday, November 24, 2021

Tonight's picture was taken on November 21, 2008. About 9 days after Mattie's second limb salvaging surgery. Given that Mattie was hooked up to all sorts of machines and had his leg and arm in casts, he wasn't moving outside of his hospital room. So on Fridays, the chemistry club would make a special visit into Mattie's room. No matter how awful Mattie felt, he never wanted to miss the chemistry club. Mattie loved the hands on learning and to see what activity the club cooked up that day. I will always be grateful to Chris, the club's president, who connected with Mattie and found a way to help him break through the anxiety and depression even for just thirty minutes. 

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

• Number of people diagnosed with the virus: 48,091,937
• Number of people who died from the virus: 775,397

Peter shared photos with me of Thanksgiving prep on the Farm. 

Peter did a beautiful job putting together a Thanksgiving table.

Meanwhile, my mom's clock alarm went off at 5am. It was so loud and kept ringing for so long, that it woke me up out of a deep sleep. I wasn't able to get back to sleep. So I got myself washed and dressed and went to the kitchen to start baking a three tiered chocolate cake. We have family friends joining us for Thanksgiving, and my dad's friend mentioned last time we were together that he loved chocolate cake. I remembered that, and decided therefore to make a chocolate cake. Given the chaos all around me, I have to cook and prep for Thanksgiving in bits and pieces. 

I took my dad and his caregiver to visit the gastroenterologist today. I wanted to follow up with them regarding his Irritable Bowel Syndrome. I wanted to hear from them that there is NOTHING else we can do, and to also check to see if my dad needed to continue with a gastroenterologist on the East coast. The answer is NO. It is a horrible disease, that has NO cure. Basically this disease can limit one's life, and definitely has consequences on one's social life. As any food or fluid going in can produce intense diarrhea. I can't tell you how many times my mom and I have been out in public and my dad has had an episode and we have had to clean him and the floor around him. It is overwhelming and though he most likely had this issue all of his life, now with his inability to move quickly and his dementia, he can't get to the bathroom in time, and also can't distinguish when he has to go to the bathroom. You may be saying, why not just take ? Well Imodium, if not managed well, can cause constipation, and this sent him to the hospital in 2020 with an impacted colon. 

My dad spends more time sleeping and napping than awake. We got him to the doctor's office and literally he napped until they called him back. I was livid in the office today because they kept us waiting an hour. I literally flipped out and told them we were walking out because this wasn't fair to keep my dad waiting for so long. Needless to say, they jumped through hoops and my dad was seen immediately. 

I learned today that there isn't anything further we can do other than continue to keep my dad away from dairy and taking Metamucil (in large quantities) each day. The office staff were empathetic and I can only imagine what a support group for this disease is like.

I did chores with my parents today, took them out to lunch, went back to the grocery store and made chocolate frosting tonight for the cake. 

The three layered chocolate cake!

I cleaned the turkey tonight and have it marinating in the refrigerator overnight. 

Meanwhile this sight gets me every year in Toluca Lake, CA. People line up, and I mean line up to pick up a ham at Honey Baked Hams. Literally lines go around the corner and into the neighborhood. From the moment the store opens until it closes. 

In the midst of everything else I have going on, I got a jury duty notice for the District of Columbia today by email. It was with great pleasure that I filled out the survey and let them know I moved. In DC they call you for jury duty every two years. It is beyond ridiculous and I have no patience what so ever right now for this or any other pressure. 

Tuesday, November 23, 2021

Tuesday, November 23, 2021 -- Mattie died 634 weeks ago today. 

Tonight's picture was taken on November 19, 2008 (8 days after surgery). Mattie's healthcare team wanted him to do breathing exercises post-surgery. However, the standard exercises did not work for Mattie. He wouldn't do them, so we got creative, such as using funny straws and getting him to suck and blow bubbles. However, Mattie would only do it if I did it first. I was used to this with Mattie, given he did years of occupational therapy as a toddler. Back then, I took an active role in all his sessions and together we learned his exercises and strategies to overcome many of his sensory issues. 

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

• Number of people diagnosed with the virus: 47,969,632
• Number of people who died from the virus: 773,522

Today my dad and I stayed home while my mom got the opportunity to go out to lunch with a friend. Without worrying about my dad and his many issues. I think the human spirit is quite interesting. We can handle so much but without having some freedom and time to ourselves now and then, we truly burn out. 

I spent some time in the kitchen today prepping for Thanksgiving and of course making me and my dad a late lunch. My parents are used to eating one big meal a day, whereas Peter and I eat three times a day. So there will be big adjustments ahead. 

This is a photo of the sweet potato souffles that I put together. They haven't been cooked yet, I wait until Thanksgiving day, but there would be no way to cook all these sides on one day. Or at least not for me!

I worked on homemade stuffing today. I love sourdough bread and to me that type of bread used makes a big difference for the stuffing. I actually made two of them, but only photographed one. I know my parents love the sides, so having extra always goes over well. 

The last time I was in Los Angeles, was April. I have seen a decline in my dad's energy level over these seven months. He does physical therapy and occupational therapy exercises each day. One of the things his physical therapist has him do is to try to walk 15 minutes consecutively each day. He was doing very well with this in March and April. Now not at all. 

In any case, I made us a turkey meatloaf today stuffed with spinach, arugula, carrots, and onions. A big sweet potato and a salad. My dad ate very well, and if you set up his space with all the things he needs (condiments, napkins, salt, vinegar, etc) then he is good to go. 

Monday, November 22, 2021

Monday, November 22, 2021 

Tonight's picture was taken on Peter's birthday (November 13) in 2008. Quite a sight for one's birthday. Mattie had his second limb salvaging surgery the day before. It was a long long surgery, over 12 hours. As you can see, I parked myself on Mattie's bed and kept a close eye on him as he was dealing with intense pain and of course seeing all these wires and tubes connected to one's self is scary. Not to mention that two out of his four limbs were in casts. 

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

• Number of people diagnosed with the virus: 47,863,314
• Number of people who died from the virus: 772,260

In between chores and tasks, I started with my day with a conference call. I had the wonderful opportunity to chat with Georgetown University Hospital's ONLY psychologist for cancer patients. You heard that correctly, one professional for tons of patients. That may sound awful, but some hospitals don't even have one of these psychosocial clinicians. Which is remarkable and pathetic at the same time. 

I connected with this psychologist, because I learned that Mattie's hospital is using our Psychosocial Standards of Care to design their pediatric psychosocial program from the ground up. When I heard this, I felt so many emotions. One of which was being proud, as Mattie's suffering has to have MEANING. This psychologist and I are on the same page and we are talking the same language. My hope is that the institution will use Mattie Miracle as a resource, and I hope this is the start of our continued relationship. Needless to say, this call was exactly what I needed today. It made me focus and discuss something I am passionate about, rather than what my days are typically like which is inundated with physical chores and dealing with house and moving issues. For an hour I felt like a professional and a person who had something meaningful to contribute.

Of course that feeling doesn't last long. As soon as I got off the phone, I had to run chores to the bank, post office, grocery store, help my dad throw out paperwork, cook, and the list goes on. I keep grounding myself, by remembering what it was like trapped in a PICU when Mattie was coping with cancer. Back then, I longed for the day when I would be free to do mundane everyday tasks. Everything is relative and Mattie's illness taught me so much about life that had absolutely nothing to do with cancer. 

Sunday, November 21 2021

Sunday, November 21, 2021 

Tonight's picture was taken on November 12, 2008. Mattie's second surgery day. It was like 5am, and we were in the pre-opt area with Mattie, awaiting to meet the surgeon and anesthesiologist. I typically love anesthesiologists, because they play as crucial a role as the surgeon. However, the chief of pediatric anesthesiology was a piece of work. I did not hit it off with her in the pre-opt area, and it translated into the way she managed Mattie's pain post surgery. As you can see from this photo, Mattie wasn't happy and Peter looked tense and rightfully stressed out. 

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

• Number of people diagnosed with the virus: 47,730,591
• Number of people who died from the virus: 771,118

One thing that is consistent about Los Angeles, is the weather. It is remarkable to see the sun out and have warm temperatures in late November. I have no idea if California residents realize how lucky they are, but the weather doesn't go unnoticed by me. My days are busy here, and I haven't even begun packing. My dad requires a lot of assistance and my mom can't help me, because in reality she was days from collapsing from caregiving. Typically a high energy person, she is now depleted and I am trying to give her time to rest, not to mention making sure she is eating as in my opinion she needs to gain 20 to 30 pounds for her health. 

Typically my parents stay close to home. For various reasons. But today I decided to drive them 45 minutes away to Westlake. There are many lovely spots to dine in Westlake and given that it was a glorious weather day, we ate outside. They both ate very well. However, today I wasn't feeling well. My headache got to me and I started getting nauseous at lunch. Thankfully I never travel without Zofran, otherwise, I would have been a mess.

On the drive home, I got on the wrong freeway. Going in the opposite direction that I needed to. Around here, it isn't as easy as it is on the East coast to get off the highway and then get on in the correct direction. So literally I gave my parents a tour of Simi Valley. Which to me is a beautiful place. Look at these mountains and terrain. It is stunning. But the fact that I got on the wrong freeway, made my parents nervous. However, I kept calm and eventually got on the freeway going in the right direction. 

For the past two days, I have been helping my dad go through paperwork in his office. So much of it was outdated, and in my opinion needed to be shredded and thrown away. I can't tell you how much paper we are recycling. My joke with my dad is he had twenty trees in his office in paper work alone. I wish I could say we cleaned out his office, but there are still more drawers to go through. My dad had this incredible need, almost an obsession, with keeping every document he ever received and then made multiple copies of it. In addition to the office, we went through his piles of paperwork he stacks on the breakfast table. Pieces of paper with several words on it or reminder messages. It shows how scattered his brain is, as he will make notes that make no sense and then doesn't remember that the note even exists. So when I tell you we have stacks of bits and pieces of paperwork everywhere, I am not kidding. He and I are polar opposites with paper. He has a need to keep paper, and I have a need to SEE NO paper or stacks anywhere. So this will be an interesting existence between the two of us.