Saturday, April 10, 2021

Saturday, April 10, 2021

Tonight's picture was taken in April of 2007. Every April the azaleas come out in full bloom at the National Arboretum. I would always tell Mattie that the azaleas came out in time for his birthday! They bloomed just for him. He loved when I said that! 

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

• Number of people diagnosed with the virus: 31,149,205
• Number of people who died from the virus: 561,758

Last night Peter sent me this photo! Honestly how can you look at this photo and not LAUGH! Both animals are staying close. Apparently my presence is missed and I know this makes Sunny anxious! 

Meanwhile Peter is overwhelmed with toiletries! They are coming to us in all directions. I am so grateful that our supporters are helping us stock our Snack and Item Carts at local hospitals. 

I can't believe as of next week I will be in Los Angeles for 17 days. I feel like I got a lot accomplished, but it is hard to leave as I know my dad needs a lot of support, and my mom needs periodic breaks. Today we went out to lunch in Calabasas, which is about 30 minutes from where my parents live. While at lunch, I reflected (to myself) on the fact that when I was a child, I was afraid to interact with a waiter or waitress. My dad would order for me. Now we have done a 180. As it is me who takes charge and orders for my dad. Not sure that is an earth shattering revelation, other than I would have to say that dementia overall is a horrible disease. It is one of those invisible diseases, as people can't necessary see it, therefore, people do not accommodate to my dad's needs. 

In comparison to January, I see a physical decline in my dad. He has far less energy, I notice his left foot is dragging when walking, and his dementia makes him very self focused. He was never a chatty person to begin with, but now when he eats, he can't focus on anything other than his food. He doesn't engage in conversation and also isn't listening. Fortunately his appetite is back, but my joke to my dad is he is like a goose. What comes in, comes out. So literally we can be out at lunch, and like clock work as soon as he finishes eating he has to RUN to the bathroom. I emphasis run because if he doesn't make it in time, we are faced with a mess thanks to his irritable bowel syndrome. My dad uses a walker and walks much much slower now. So his physical limitations make it hard to get to the bathroom in time. He can NO LONGER remember where the bathroom is (even if it is a restaurant he goes to daily), he can't open the bathroom door, and manage toileting alone. While I am in Los Angeles, I can jump up and take my dad to the bathroom, but this is challenging for my mom when alone. Not many people like to eat food and then deal with toileting problems and accidents. Fortunately caring for Mattie during cancer treatment has made me immune to most bodily issues! 

I am trying to encourage my mom to leave the house while the caregivers are here. She needs a change of routine and the time alone to do what she wants. Otherwise this daily routine is a total grind and debilitating. However, my dad is cognizant enough to know that my mom has to remain safe and healthy, in order for him to remain living at home. So he really doesn't like her going out, if he isn't with her. It is an interesting dynamic, but I trying to get him to see that my mom needs this freedom in order to be able to continue caregiving.  

Friday, April 9, 2021

Friday, April 9, 2021

Tonight's picture was taken on Easter of 2006. Mattie was four years old! We took Mattie to brunch at Clyde's, never realizing that the Easter Bunny would be visiting the tables. When the Bunny came over to visit us, Mattie was scared. I explained this was a friendly bunny who wanted to wish him a Happy Easter. With that, Mattie smiled and greeted the bunny!

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

• Number of people diagnosed with the virus: 31,080,839
• Number of people who died from the virus: 561,038

The waterproof clock and timer arrived today. I installed it on the glass wall of the shower. I believe this will help my dad keep track of his time in the shower. As I will have the caregiver set a timer each morning, so my dad can have direct feedback for the amount of time he is spending in the shower. 

A close up of the timer. We shall see how it works tomorrow. 

I think it is ironic that I don't live in Los Angeles, yet I know the people who work at my parent's supermarket and all the management and wait staff at their local restaurant. All these folks are just lovely, very customer friendly, and truly go out of their way to look after all of us. Their kindness is so appreciated, because the daily routine here is wearing. 

Perhaps I find it extremely wearing this time around because day in and day out, I am dealing with a cluster headache. The pain is debilitating and excruciating. The funny part is just as quickly as the headache comes one, on day it will just dissipate and disappear. Until the next one comes on, typically months later. Actually I can have years without a cluster headache. So they aren't something I get all the time like migraines. Thankfully, because the pain can make me NUTS!

Thursday, April 8, 2021

Thursday, April 8, 2021

Tonight's picture was taken in April of 2006. That day I took Mattie to the Reston Zoo, a smaller scale zoo, with an extensive petting zoo. Mattie absolutely loved this Zoo, the pony rides, meeting ostriches, and feeding the goats. When we arrived at the zoo, I saw that big pink bunny and encouraged Mattie to pose for a photo. Mattie was used to my need to take pictures, and thank goodness I did!!!

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

• Number of people diagnosed with the virus: 30,999,998
• Number of people who died from the virus: 560,083

This morning I went upstairs with my dad's caregiver. He couldn't see me, but I was in his bedroom because I wanted to see his morning routine in order to figure why it is taking him two hours to get washed and dressed each morning. As soon as my dad stepped in the shower, I started my stopwatch. My dad thinks he is taking a five minute shower, but today he took a twenty minute shower. My dad did not know I was in the room and timing him. When he stepped out of the shower, I said good morning and told him what I was doing. I showed him my timer. He couldn't get over how long he was in the shower. I needed to observe what was going on in order to create a solution. 

This morning, I bought a waterproof clock/timer. It is my hope that it arrives tomorrow so I can install it inside the shower. I believe if my dad can see a clock or a count down, it will help him shower more effectively. What has concerned me is that showering is wearing my dad out physically. After all showering one's self for twenty minutes is tiring. 

My dad and mom had the opportunity to participate on their first Zoom call today. The people you see here are my dad's first cousins. They all grew up together in New York. Ironically for me this was my first time meeting most of them. This was a great experience for my dad, as his cousins shared many memories and though my dad did not remember most of them, he enjoyed hearing them and reconnecting. 

My cousins shared this photo with me today. The woman sitting on the left in blue was my dad's mom, and the man standing behind her (with the burgundy tie) was my dad's father. 

I am continuing my cooking spree. I went grocery shopping again and put together honey mustard chicken wings and legs. I am cooking and freezing them, so that my mom can easily have access to cooked food for herself and my dad. 

Also baked chicken breasts and thighs. My mom only eats white meat and my dad only eats dark meat. So this way, there is something for each of them. 

Wednesday, April 7, 2021

Wednesday, April 7, 2021

Tonight's picture was taken in April of 2005. That day I picked Mattie up from preschool and we went to the mall to visit the Easter Bunny. By that age, three years old, Mattie enjoyed visiting Santa and the Bunny. Whereas prior to age 3, Mattie would have been running the other way. I certainly did not blame him, because as I child I remember running for cover when I saw any life sized characters! I am so happy I have this photo, because it was the first and last visit to see the Easter Bunny 

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

• Number of people diagnosed with the virus: 30,917,756
• Number of people who died from the virus: 559,066

Peter drove back to DC today from Boston! Sunny wasn't happy about this, as he LOVES visiting Peter's parents. Especially since they have woods behind their home, filled with birds, deer, and other wonderful signs of nature! 
I have dealt with cluster headaches for over a month now. The pain is excruciating and it hasn't lightened up! Nothing I take eases the pain. It consists of stabbing eye pain, sensitivity to light, pain in my jaw, and my face and head are so sensitive, I can't touch them. The pain keeps me up at night, and waking up every morning at 6am, doesn't help how I am feeling. 

Literally as soon as I get up, it is non-stop activity! My dad wants caregivers, but I assure you having people in your home each day provides a great deal of stress. The morning routine is driving me crazy, as it takes the caregivers 90 minutes to bath and dress my dad. I don't get what the hold up is, as I can manage this in 30 minutes. I don't want to rush my dad, but him coming downstairs at 10am only leaves two more hours for the caregivers to work with him to complete cognitive and physical exercises. It isn't enough time.  I have noticed a significant decline in my dad's energy level, his ability to walk, and his cognitive ability since I was here in January. Which is why I spoke with his in home care company, who has already put in an order to resume physical and occupational therapy in June. 

One of the highlights of my day is the fountain in my parent's backyard. It attracts all sorts of birds! 

Meanwhile, look what was waiting for Peter when he got back home! Kearney and Company, the presenting corporate sponsor of the Mattie Miracle Walk, donated a ton of toiletries to our April item drive! These items will help to stock our Snack and Item Carts at local hospitals. 

I return back to DC next Tuesday. I have started cooking things for my parents to freeze, so they can eat them when I am gone. Taking my dad out to lunch is challenging, and it is hard for my mom to manage this alone now. Which is a problem, because I believe going out is beneficial for both of them. Especially cognitively for my dad. 

My dad struggles with dementia, physical limitations, and irritable bowel syndrome. Together this is a very challenging set of issues to coping with, and though I think his quality of life is good (because we really work at it), the quality of life for the rest of us is questionable. 

Tuesday, April 6, 2021

Tuesday, April 6, 2021 -- Mattie died 601 weeks ago today. 

Tonight's picture was taken in May of 2009. This was Mattie's second party to celebrate his 7th birthday. The party was at my friend, Christine's house. In fact, Christine's husband dressed up as a roach, since it was one of Mattie's favorite bugs. So much so, that they even had a roach shaped cake to celebrate the occasion. 

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

• Number of people diagnosed with the virus: 30,843,737
• Number of people who died from the virus: 556,486

This morning, like usual, I woke at 6am. However, instead of listening to the radio, I tuned into a YouTube channel to watch and listen to my friend, Margy's funeral. Honestly if it weren't for COVID, I am not sure churches would even have this technology up and operational so we can virtually attend mass. It was hard enough not to say goodbye to my friend, but if I wasn't able to witness her funeral, that would have been ten times worse. Afterall the funeral was in Virginia and I am in California. 

There were about 300 viewers online, and I am happy the family could see so much love and support from around the country. Though it was sad to see the low attendance in the church. I get why, but it is hard enough to be at a funeral for someone you love, but I would imagine even harder not to be surrounded in person with support. Yet again, thinking back to Mattie's funeral, I was on autopilot, and not sure I could absorb everything or everyone around me. 

Below, I posted the youtube video of Margy's funeral. Again the wonders of technology, as the family can have this link always, and share it with others. In a way, I wish I had this for Mattie, but the world did not think this way prior to COVID. 

Two things caught my attention during Ken's (Margy's husband) eulogy. He mentioned that Margy recently wrote two thank you notes to friends. But never mailed them. He held them up. One was to me! Margy wanted to thank me for all my visits and every trinket I gave her. I was very touched to hear this, and again viewed this note as Margy's last message to me. Which I really needed, as I felt awful not seeing Margy during the Pandemic and also for not having a chance to say goodbye. Certainly I could have written a message to her children or her husband, a message that they would have conveyed to Margy on my behalf before she died. But I just did not have the words, or if I had words to share, I wanted to share them personally, not through a messenger.

Ken shared two stories about Margy, to illustrate her kindness to others. When I heard the stories, all I could think of was myself. Ken was describing Margy and me! Which maybe why Margy and I bonded instantly when we met. The first story took place at the Kennedy Center. Margy and Ken went to see a show. At intermission, Margy went to the restroom. Ken waited outside in the hallway. But Margy apparently was in there a long time. When she came out, he asked her if she was okay. She explained that she got talking to a woman while washing her hands. This woman had cancer, and Margy was listening to her cancer story. 

The second story took place in a restaurant. While Ken was enjoying his shrimp, Margy somehow connected with the owner of the restaurant sitting several booths away from them. The owner happened to be a mom who lost a child to cancer. The point was Margy had a way of talking to strangers and connecting instantly with them. Ken's observation of Margy, reminds me of what Peter says about me all the time. 

It is hard to believe Margy has been gone from our lives for a week. It just doesn't seem possible. Margy always expressed guilt to me about wanting to live a longer life. She felt guilt because she knew so many children lost their lives to cancer daily. She felt in comparison to these young lives, she shouldn't complain or ask for more. Naturally, I always tried to reframe her thinking and to tell her she should feel NO GUILT. Her life mattered. Therefore, it was important to hope for more time, time to spend with those she loved, and time to make more memories. 

I think the moral of the story here is that it is important that we express ourselves to those we love. Waiting for the right time is a problem. Because the right time may never present itself, until it is too late. 

The YouTube Video of Margy's funeral:

Monday, April 5, 2021

Monday, April 5, 2021

Tonight's picture was taken on April 4, 2009, at Mattie's 7th birthday party held in the hospital's child life playroom. Next to Mattie is Brandon, Mattie's best buddy! Mattie and Brandon were diagnosed with cancer a month apart, despite their age difference, they were close friends. I will always be grateful to Brandon. Even when Brandon finished treatment, he would come monthly to the hospital to visit Mattie. That may not sound like a big deal, but it was, since Brandon lived over an hour away from the hospital. Mattie had a great time at his party. He spent the morning decorating the playroom, and a handful of friends from school came to share the day with Mattie. 

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

• Number of people diagnosed with the virus: 30,775,094
• Number of people who died from the virus: 555,381

I have had a cluster headache for a month now. How I am functioning is beyond me. The pain is excruciating and gets severe at multiple times during the day. Especially while sleeping. I find that my best sleep happens at 5am onward. Given that I get up at 6am each day in LA, I am not getting much sleep. Which compounds my pain. 

What I wasn't expecting was being jolted awake at 4:44am! I was awoken to the feeling of being shaken! Furniture was rattling all around me. I immediately grabbed my phone, which confirmed I experienced a 4 magnitude earthquake. Honestly it is very unsettling because what I feared was this could be the pre-shock, and a bigger one would happen! After the shaking, I went to check on my dad, who appeared to be sleeping. Yet when he came down for breakfast, he reported being awake. 

When I was in high school, I will never forget we had earthquake drills. I remember the first drill we had, and I honestly did not understand what was going on. Fire drills I understood, earthquake drills as a New Yorker, did not mean too much to me. But I learned the art of dropping, covering, and holding on philosophy. The natural instinct when facing a crisis is to run, but in an earthquake, sheltering in place is the safest thing you can do! 

Over the years I have experienced both types of earthquakes... shaking and rolling. Today was shaking! Given that I am not a person who likes movement, especially movement I can't control, earthquakes are scary! 

Sunday, April 4, 2021

Sunday, April 4, 2021 -- Mattie's 19th birthday!

Tonight's picture was taken in April of 2008, during Mattie's 6th birthday party! That year, Mattie had a bowling party and his entire kindergarten class was invited. Mattie became sick at the party, he developed a fever, but managed through it, that's until he got home. At which point he fell asleep for hours on the couch. The theme that year was Scooby Doo! It is hard still hard to believe that this photo was taken three months before he was diagnosed with cancer. 

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

• Number of people diagnosed with the virus: 30,705,525
• Number of people who died from the virus: 554,994

Another 6am rising! It was a typically full morning of activity. After walking with my dad and his caregiver for his 20 minute routine, I then went for an hour long walk with my mom. Today I came across two big pine cones right outside my parent's home. The thing is there aren't any pine trees that produce such large cones anywhere on their street. So where did these pine cones come from? NO IDEA! I have instead decided to believe that they were a message to me from Mattie, on his 19th birthday! These were the types of pine cones Mattie always loved to collect. 

Though it is Mattie's birthday, I did not mention it today. My dad has enough going on, and I figured to just focus on Easter instead. We went out to a lovely lunch in Calabasas today. 

Me and my dad. 

Today would have been Mattie's 19th birthday! To me, he is forever 7. It is hard to believe we have acknowledged 12 birthdays without him, as we only had Mattie in our lives for a very short period of time. Mattie never took naps, even as a baby, and I am quite certain he wanted to be up and alert so he would not miss out on anything!

Mattie loved hearing the story of his birth, which you can read below. I post it every year at this time. It was a story I wrote for his celebration of life in 2009. The last time I told Mattie this story was on August 5, 2009, the day we learned his cancer was terminal. Mattie took comfort in hearing this story and always laughed when I described his first cry at birth.

To know Mattie was to LOVE him. He had a wonderful sense of humor, he was our "little engineer," as he naturally understood the concepts of building things and taking them apart, he was incredibly bright, loved nature, and was a great cancer advocate (even at age 6).

Mattie was my greatest teacher. From him I learned that childhood cancer is NOT just about the medicine. Peter and I carry on Mattie's legacy, in the hopes of helping countless other children and families. We have no problem shedding light on the reality that the psychosocial issues DO NOT end (for the child and the family) when the treatment does.

Happy 19th birthday Mattie! Ooga Booga (which translated in Mattie-ese means.... I LOVE YOU!)

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My Dearest Mattie,

It is said that parents love their children right from the moment they are born. However, in your case, our love for you began as soon as we learned we were going to have a baby. In fact, right after seeing your sonogram picture, we felt like proud parents. We posted those pictures everywhere. We shared these pictures with practically anyone who would listen or showed interest, and each September when I taught prenatal development in my undergraduate human development class, out would come your sonogram pictures to illustrate my points. Even my students got a sneak peek at our baby, a baby who would have a profound and meaningful impact on not just his parents but also every community he touched. Daddy and I did not only love you, we FELL IN LOVE with you, and that love grew stronger with each day. Your energy, spirit, love for life, intellectual challenges, sense of humor, and loyalty to your friends and family were only some of the wonderful traits we always admired in you.

This video is a tribute to you and your wonderful, yet short life. It seems fitting as we celebrate you, and say good-bye to your physical presence that I share the story about how you entered the world. The story of your birth had to be one of your most favorite stories to hear, and I found during times when you were reflective, overly tired, or in need of hugs and tenderness, the request for this story arose. In fact, I remember on August 5th, the day we found out that your cancer metastasized everywhere, you and I were sitting in the hospital’s rose garden, and you requested the story. It was almost as if you knew this was going to be a bad day, so in essence we might as well brace ourselves, cuddle, and prepare for this together.

Here is the story I always shared with you. A story Daddy and I will never forget. On April 2, 2002, at 11pm, I decided to head to bed. I was anxiously awaiting your birth, and as your due date approached, I couldn’t help but wonder, when will “the baby” be coming? I was restless and uncomfortable, so while in bed, I began to watch television. I was having trouble concentrating on what I was hearing, mainly because you were kicking up a storm inside of me. At which point, the kicking became so intense, that I literally felt something pop. You clearly wanted OUT, and you were going to kick your way into the world on your terms. Naturally after feeling this pop, I looked down at my tummy, and when I jumped out of bed, I realized my water had broken. This only happens to 25% of moms, and in retrospect, I should have guessed that this was just the beginning of how different our lives were going to be together. I immediately called the doctor and told her what happened. She asked if I was in pain, which I wasn’t, and she instead told me to get a good night’s rest, because my baby was going to be born the following day. Well I can assure you after hearing this news, sleeping was the farthest thing from our minds.

So on April 3, 2002, Daddy and I headed to the hospital and we were admitted to the maternity unit at 8am. The labor process began, but it was a VERY slow process for me, and at times as you moved inside my tummy, Daddy could see your head pushing against my backbone. Needless to say Dr. Mike, the anesthesiologist, became my favorite doctor that day. The hours kept rolling by, and still there was NO sign of our baby! I was getting weaker, I developed an 102 fever, and by 11pm I really had no energy to give birth to you. In addition, to how I was feeling, your oxygen supply was getting cut off, and your chin was positioned in such a way that would make the birthing process almost impossible. So it was at that point that the doctor recommended an emergency c-section. Things began to happen very quickly around me. I was signing paperwork for surgery and Daddy was being transformed by putting on a bunny suit so he could enter the operating room.

I had never been in an operating room before in my life, but I really wasn’t concerned at that point about myself. I was solely focused upon you. I was wide-awake for the c-section, but unable to see the process, which as you know, was probably a good thing. Daddy on the other hand found the whole thing very exciting, and began to videotape and take pictures of the surgery. Literally a team of people surrounded me and I will never forget Dr. Mike, the anesthesiologist who sat by my side, and talked with me and did whatever he could to keep me pain free.

When you have a c-section, your arms are strapped to the operating table, so I couldn’t move, and directly over my head was what appeared to be a rope with a clamp that was holding open my abdominal cavity. Normally by this point I would have passed out, but when it came to you, I developed strength I never knew I had. As the doctor began cutting, and finally got to you, the first thing she said was, “what is this?” That is NOT what you typically hope to hear when having a c-section. The doctor let me know that I had a grapefruit sized tumor on my bladder, and my immediate thought was, did this affect the baby? The next thing I knew, I felt her tugging, and I heard the loudest cry ever. Now here is the part of the story that I know was always your FAVORITE! I would always try to replicate the sound I heard coming from you that day, a sound that will always remain in a parent’s ear. It was a very large WAAHHH! WAAHHH! At which point the doctor told us two things: first, that you were one of the most beautiful babies she had ever seen, and second, that you had quite a set of lungs on you! I concurred with both statements.

The doctor then brought you over to me, and she felt that I needed to be the first person to touch you. So despite my arms strapped to the table, my right hand miraculously reached out and grabbed your tiny, soft, and cute foot. It was a moment I will always cherish, a moment in which I will never forget, and a moment I am so happy you too enjoyed hearing about. Each time I retold the story I felt as if it further bonded us together, and I always enjoyed hearing your comments, thoughts, and reactions to your story.

Seeing you made Daddy very happy! Though he was worried about me, since after the c-section, I had to have bladder surgery to remove the tumor, we both agreed that Daddy should stay with you and accompany you to the nursery. It is there that Daddy got to see you cleaned up, he learned that you weighed 6 pounds and 13 ounces, and that you had high Apgar scores of 8 and 9. Within an instant, Daddy became one of your fiercest protectors, and he cared for you for five days straight while we were in the hospital together. In fact, Daddy is the first person who changed your diaper, and though those were five very challenging days in the hospital, they were days that helped us form our strong family ties. Ties that were imperative and that we relied on for seven years of your life!

Your presence is so greatly missed. Nothing seems the same, is the same, looks, feels, or tastes the same without you in our lives. May you always know that Mommy and Daddy love you, cherish you, and that feeling will remain with us forever and always. Good-bye my Mooshi Moo angel and goodbye Daddy’s best buddy. With love from Una Moon and Daddy!