Saturday, March 4, 2023

Saturday, March 4, 2023

Tonight's picture was taken in March of 2009. I remember this day vividly! The child life playroom was having a ribbon cutting ceremony and party. Mind you the playroom had been open prior to this for months, but nonetheless, we were thrilled to celebrate its existence. Why? When Mattie started treatment in August of 2008, there was NO playroom in the pediatric units. When I tell you it was a nightmare without this space, I am not kidding. There was no where to go, other than the hospital room itself or the hallways. The playroom opened up a whole new world for Mattie and it made an unbearable experience a little better. Mattie was selected that day to help cut the ribbon at the ceremony and Geoffrey, the giraffe, gave Mattie a high five!

Quote of the day: I'm very brave generally,' he went on in a low voice: 'only today I happen to have a headache.' (Tweedledum) ~ Lewis Carroll

Peter is in our front yard today, working in the garden! Sunny went out to help, but as you can see, he was sleeping on the job! I feel badly for Sunny because he was so used to my attention and daily walks when we lived in the city. Now I hardly have time for anything other than caregiving. Thankfully Sunny enjoys our yard and his outdoor time with Peter. 

While inside today, helping my parents, Peter sent this this photo from our garden. To me this means, spring has finally sprung!

I have been taking Sudafed all week because of my head cold and congestion. It is the only thing that helps me manage my symptoms, however, I have found that it also keeps me up at night. So last night, I did not take Sudafed and did finally sleep better. But of course that meant that I woke up very congested and my head has so much fluid in it today, it felt like it could explode. At one point today the pain was so bad, I wanted to scream or cry. But honestly who's going to listen? So I sucked it up and moved onto the next task. 

The only advantage of my parents being sick, is I have more time at home to get work done. So far this week, I finalized the Foundation's Walk website, tested it, and launched it. I worked on our Foundation's March newsletter and updated the Foundation's website. However, given how I am feeling, I am now going to take a forced break (even for an hour) before I have to make dinner and manage the next task.

Friday, March 3, 2023

Friday, March 3, 2023

Tonight's picture was taken in March of 2009. I know this photo had to be taken on a Friday, because on Fridays the university chemistry club visited the pediatric units and did hands on experiments with the kids. Mattie absolutely loved this club and no matter how badly he was feeling, he always wanted to participate in their antics. Sometimes the club even came into Mattie's two by four of a hospital room. 

Given that we now live in the post COVID era, where masking is commonplace, this photo may not strike you as being odd. But think about our world prior to COVID. Most of us never wore a mask on a daily and hourly basis. But for children with cancer, this is very common place. They must wear masks when their white blood cell counts are so slow, making them susceptible to all sorts of viruses and infections. 

Quote of the day: Life is like a bicycle. To keep your balance, you must keep moving. ~ Albert Einstein

Last night my mom was complaining so much about her cold symptoms while we were having dinner, that literally mid-bite, I asked Peter to hand me my cell phone. My mom has been lamenting about not being in California and if she was in California, her doctor would have started her on antibiotics already. I couldn't handle it anymore, and I decided to contact her pulmonologist. Since it was after hours, I had to leave a message and wait for the on-call physician to get back to me!

I resorted to her pulmonologist because I know my parent's internist would be no help. As many of my faithful readers know, I call this doctor, dopey. Dopey lives up to his reputation. I can appreciate why he is judicious about prescribing antibiotics. But in my parents case, they have been fighting this upper respiratory cold for a week and NOT getting better. In addition, with their age and underlying health conditions I would think this physician would take notice. Or at least think twice about the benefits of prescribing antibiotics. 

I feel like my parents physician has left me to do everything this week, without guidance and help. In any case, it did not take any convincing of the pulmonologist last night. She quickly prescribed a z-pack and Peter went out to CVS to retrieve it. Thankfully our pharmacy in Arlington (where we used to go when we lived in the city) is open 24 hours a day. It is practically the only one in our region open all night. Any case, they filled the script in record time and within an hour, I started my mom on the medication. 

Yesterday, I thought my dad's condition was stabilized. But as soon as he heard that my mom was prescribed antibiotics, his symptoms somehow magically reappeared. His cough is back with a vengeance and he is coughing up yellow stuff. Needless to say, I wrote to his doctor last night requesting a z-pack for him. I told him that my mom is already on one, and we have given it a week and there is still no improvement. 

This morning, I checked my dad's portal. There was NO message from the doctor. So at 9am, I called the office. Turns out dopey is having dental surgery today and is away from the office. His physician's assistant, just had a hip replacement surgery, so she is out too. Needless to say, I spoke to the manager of the office and he could tell I was not a happy camper. Dopey needs to have a system in place if he is going to be out of the office! Otherwise, I guess his patients can only get sick on days he comes to work! The office manager, put me on hold, and somehow got a hold of the doctor before his surgery. End result, my dad is now on antibiotics too. 

I have played nurse maid, on top of my usual caregiver role, for a week and I am tired. I think I am so stressed out that I am not sleeping at night. I have had bouts of insomnia before in my life, and I would say this entire week it takes me hours to get to sleep. Fortunately once I get to sleep, I stay asleep, but given that I have to get up so early, not falling asleep until 2 or 3am is disconcerting.  

Meanwhile, if you ask my dad why he did not go to his memory care program this week, his answer will be.... 'I don't know!' Then he will say, "because I have COVID." I have reminded him that he doesn't have COVID and tested negative. But things just don't compute. I have gone in circles with him today about the fact that he has a cold and a bad cough. Therefore, he can't go into the center when so sick. I even wrote the word, SICK, in his daily journal, in red ink. Since Sunday, I have counted each sick day in his journal, but no matter what I do, he retains nothing, has no interest in anything, and there are times I think I could get a better response if I was talking to the wall. 

Thursday, March 2, 2023

Thursday, March 2, 2023

Tonight's picture was taken in March of 2009. I wasn't present for this special moment, but Peter and Mattie's nurse sent me this photo. Mattie was in the child life playroom, and he, his nurse, and Peter were having a competition. They wanted to find out who could more accurately follow along and do yoga positions. This may not seem like a big deal, but Mattie was healing from three limb salvaging surgeries. He couldn't walk independently, but despite all of this Mattie was able to keep his balance and hold various yoga positions. When I saw this photo back then and even now, I am in awe of what Mattie was able to do given all that he faced. 

Quote of the day: Flaming enthusiasm, backed up by horse sense and persistence, is the quality that most frequently makes for success. ~ Dale Carnegie

I learned this morning that my dad does not have COVID. His negative test confirms this. My dad is on the mend. He still has a slight cough, but it much better than my mom. My mom is struggling with exhaustion and a terrible head cold. I have her on all sorts of cold meds and last night when she was upstairs changing for dinner, I heard a big thug. I did not think much of it, until I called her down for dinner. At which point, I realized she fell in her office, with the door locked. So we had to figure out how to open the door to assist her. Fortunately she did not hurt herself, but I have to keep an even closer eye on her now. 

My parents were resting all day today. While they were resting, I made it my business to finish the Walk website and start testing it today! Persistence and determination are my keywords! They define who I am, especially when it comes to Mattie's Foundation. 

Despite having a head cold myself, and not sleeping much last night because of a post nasal drip, I worked the day away. I am proud to say that the Walk website is up and operational and that I will be able to announce this website link in our March Foundation newsletter. That was my goal!

The landing page of the Walk website features the group participant photo from our 2019 event. That was our 10th anniversary Walk and our last in-person event. 

COVID forced me, and all non-profits, to think more broadly and virtually. In 2020, we translated our live event into a virtual one and will continue the event virtually indefinitely. Given my family circumstances now, there would be no way I could plan and host an in-person event. I am thankful we made the investment in the technology to host such an event and that we now have supporters in all 50 states participating. To see our Walk Page, go to: https://2023.mmcfwalk.com/

I have been working on corporate sponsors for our event. Currently our thermometer reads $32,583. Our fundraising goal is to reach $100k.

In addition to launching the site, I tested our registration, donation and raffle sites today. I created a personal Walk page. It features a photo of me, Peter, and Sunny at CureFest on the National Mall in 2016. 

I then created a Walk page for Peter. It features a photo of us from our 2012 Walk. Back then, we used to have themes associated with our Walks. That year it was Love of Family. After that year, we then moved away from themed Walks, because we wanted the Walk itself to be the focus and the event.  

I also created a walk page for my parents. The photo on the page was taken at Butterfly World in Florida. Butterfly World is an ethereal place that Mattie loved to visit, and that we appreciated as a family. I miss our trips to this special place. 

Wednesday, March 1, 2023

Wednesday, March 1, 2023

Tonight's picture was taken in March of 2009. Mattie was in the outpatient clinic and that day he wanted to eat a big salted pretzel. Given that I was at the hospital, access to things was severely limited. But thanks to Team Mattie, Mattie's request was accomplished! Since Mattie lost a lot of weight on chemotherapy, we were eager for him to eat. Whenever he craved something, we found a way to find his food of choice! I remember all these food phases....vanilla frosted donuts, Utz potato chips, French fries, and vanilla shakes! 

Quote of the day: Sickness comes on horseback but departs on foot. ~ Dutch proverb

Tonight's quote is so applicable to what I am experiencing with my parents. It was so simple for my parents to get sick, but VERY difficult to get them better. My dad caught a bad head cold on Saturday. From there, he passed it along to my mom. My dad is coughing and had congestion. Whereas my mom started with a sore throat, but now has a cough. Neither have fever or any other symptoms other than exhaustion. 

This morning I woke up with a sore throat too. I took Tylenol and then went about my morning routine. I have no other choice, if I stop functioning, so does my whole household. However, by 11:30am, I knew I had to lie down. I went upstairs for about 90 minutes. But at 1pm, I arose because I could hear my dad finding his way to the bathroom, and I knew they both needed lunch. 

I made more homemade chicken soup today from scratch. I love having it on hand and it freezes so well. Whenever I need it, like this week, I have it available. Meanwhile, I am awaiting my dad's doctor to call us about his COVID test results. We decided to do the test in the office, because the doctor said it is more accurate than the in-home version. The doctor promised to call us today with results! It is 5:30pm and still no call. Mind you I have even left a message on the on-line portal for the doctor. Do you see why I have nicknamed him DOOPEY? 

This doctor believes that one should fight off viruses naturally. I can appreciate his philosophy, but I don't share it, especially with patients my parent's age. I will let them struggle another day and then by Friday, he will have to provide more support. The issue with my mom is once she gets a head cold and cough, it is very easy for her situation to turn to bronchitis and then pneumonia. 

All I can say is caregiving on a good day is challenging, but caregiving when my parents are both sick, is depressing beyond belief. This afternoon, the weather was so lovely that I went into the backyard and sat in the sun with Peter and Sunny for a few minutes. I used to get out of the house in the past on my Sunny walks, but now Sunny doesn't have the energy to go on long walks. So for me, it seems like a depressing existence at every turn. 

Tuesday, February 28, 2023

Tuesday, February 28, 2023 -- Mattie died 700 weeks ago today. 

Tonight's picture was taken in February of 2009. We worked very hard to keep Mattie entertained, engaged, and active while hospitalized. What you see here was a make shift chemistry lab. We used Mattie's table to put set up some experiments. Mattie loved this kind of hands on learning and it was in these moments that Mattie the child shone through! We could take a pause from cancer and its treatment, and just try to be ourselves. Such activities like these helped us connect as a family, and I will always be grateful to our care community who dropped off countless surprises and gifts just like this!

Quote of the day: You’ve done enough. It’s okay to be tired. You can take a break. ~ Shauna Niequist

I relate to tonight's quote! I am indeed tired. It is challenging enough to run this household on a good day, but today, both of my parents are sick. We await a COVID test on my dad. His doctor seems to think it isn't COVID, but we all want to be certain. My dad gets tested often, given he goes to a memory care center. Nonetheless my dad's symptoms came on fast and now my mom is down for the count. So I have two sick patients on my hands. They are both exhausted, congested, and my mom has a terrible sore throat. They have remained in the family room all day resting and I am managing their requests, needs, food, and so forth around the clock. 

In the midst of all of this, I participated on a research conference call today, dropped off a 'welcome to the neighborhood' gift to my next door neighbor, and continued working on the Foundation's Walk website. But I have to admit, I feel worn out and I am worried that I could catch whatever my parents have, given my state of exhaustion. I feel intense pressure because I can't be sick or  even take a day off. If I do, everything around me will come to a grinding halt. My hope is tomorrow is a better day!

Monday, February 27, 2023

Monday, February 27, 2023

Tonight's picture was taken in March of 2009. I will never forget this day! It was a party to celebrate the opening of the Children's Art Gallery at the Hospital. For the event, Mattie created a story, which was typed up and framed and Mattie also designed a Lego structure of his version of the ideal hospital room! Mattie was very proud of his made up story and Lego creation and seeing his words up in the Children's gallery will always be part of his legacy!

Quote of the day: If you’re going to live, leave a legacy. Make a mark on the world that can’t be erased. ~ Maya Angelou

This morning, I got myself together, made breakfast and was determine to get a hold of my dad's doctor by phone. My dad has been struggling with laryngitis and a head cold since Saturday. Today his symptoms were better, but I honestly did not want to take a chance with fluid build up in his lungs. So I rather hear from the doctor that my dad is fine. 

However, before taking my dad in, I had my own appointment with my kidney stone doctor. I go yearly for a check up, because I want to prevent more stones. I have dealt with six stones in total so far, and I am hoping never to have another one! My doctor is at Mattie's hospital in Washington, DC. Parking at this hospital is always challenging, so when I am feeling well, I park in the neighborhood instead and then walk onto campus. It is much more pleasant and less stressful! 

While walking on campus, I ran into the director of child life. I honestly can't visit this hospital without meeting someone we know. Naturally Mattie was treated and died at this hospital, yet this hospital holds special memories for me. It was a hospital that gave us hope and was committed to Mattie's care, when other well known cancer institutes wrote Mattie off. I will never forget a major institution in NYC, telling Peter and I not to treat Mattie's cancer. To just go directly to palliative care. Certainly the outcome is what they predicted.... Mattie died. But the big difference is we had 14 more months with Mattie, and in that time we made memories together. In addition, I don't have doubt or live with guilt because I know that we tried everything humanly possible to save Mattie's life!

Whenever I visit the hospital, I always check out the Children's Art Gallery. 

Can you believe that 14 years later, Mattie's story and my blue collage are still on display? I love how they are side by side. 

I purposefully go to this gallery to see if Mattie's words are still on display! To me this is a legacy item and Mattie's story captures many aspects about how he felt about living life in a hospital. The feeling of being trapped, of being kept inside, rather than having the freedom to go out and eat what one wants to eat. I think the story also depicts Mattie as the hero of the day. He clearly perceived himself as a fixer, and the fact that I used to call him "my little engineer," was some how captured in this tale. 

This is Mattie's story typed up and framed.....

Once upon a time in the Lego City, there was a hospital made of Legos. It had a hot tub with a scrub brush, a computer, and a huge garden with a fountain and a parrot and flowers and trees, and a bench to sit on and read and enjoy the fresh air. It also had a playhouse with a swing. Some people called it a "tree house," because there were trees on top of it. You got into it by climbing up a ladder. There was also an ambulance, a stretcher, and a helicopter. 

One day at the Lego hospital, there were two bad boys, Steve and Paul. They didn't like the food there, so they planned an escape to The International House of Pancakes. First they ran to the IHOP, but they got caught by Joe, the helicopter pilot, who spied them as he was flying by. 

Next, they stole an ambulance, and this time they made it to IHOP, but crashed the ambulance in the parking lot. They even managed to get a table before Joe, once again found them and flew them back in the helicopter. 

Luckily the hospital had Mattie, the engineer, who was able to fix ambulance. 

Next Steve and Paul snuck out, and while Joe was getting reprimanded by the hospital staff for spending all his time chasing down the boys, and not rescuing people, the boys stole the helicopter! Again, they crashed into the IHOP parking lot. But this time they were able to sit at their table, and order a nice stack of pancakes. But, just as the pancakes arrived at the table, steaming hot, in drove the ambulance driver, Sam, right into the restaurant, crashing into the pancakes!

So Sam drove the boys back to the Lego hospital, and waiting for them there were their parents! They were angry. Thankfully, Mattie the engineer was able to fix both the helicopter and the IHOP. 

The boys' parents then agreed to pay to have pancakes delivered fresh daily, to the boys in the hospital.

After leaving the hospital, I couldn't help but notice the beautiful trees! The magnolias are beginning to bud!

Spring has sprung. Cherry trees and magnolias are in bloom in Georgetown!

This brick structure is part of the new hospital. It is still under construction. This was once one big open space, that we traversed many a day when Mattie was in the hospital. It is hard to see things change, but I also know it is needed. Though I am very fond of Mattie's hospital and it has outstanding health care providers, the infrastructure is a nightmare. It is my hope that this new space can bring the facility into the 21st century. 

Sunday, February 26, 2023

Sunday, February 26, 2023

Tonight's picture was taken in February of 2009. Believe it or not this photo was taken during the middle of a physical therapy session. Linda (Mattie's child life specialist) was the target of Mattie's nerf gun attack. Anna (Mattie's physical therapist) was encouraging Mattie to use his arms and hands and of course just asking him to do exercises wouldn't work. So she and Linda designed a game to get Mattie motivated and on board with participating. I always said that Anna was a good therapist, but by the time Mattie got through with her she is outstanding. Mattie forced Anna to really think outside the box, and she never disappointed!

Quote of the day: Sometimes, reaching out and taking someone's hand is the beginning of a journey. At other times, it is allowing another to take yours. ~ Vera Nazarian

Sunny is LOVING the fact that Peter is out doing yard work in the front of the house! Sunny is such a good boy, that even off leash, he knows to stay on our property and not wander away. 

This morning, my friend Ann wanted to come over. We haven't seen each other in a while, and she understands that I have no freedom or flexibility to my daily schedule. Since I knew my parents were both wiped out, I suggested to Ann that we meet at our local Starbuck's which is about five minutes from my home. I never have an hour to myself! So leaving the house for even this short period of time felt special. Getting out means I can be myself, if I know what that is anymore, and I do not have to be on guard and provide constant care!

Ironically my life now, reminds me of the isolation I experienced when Mattie had cancer. My life was regulated by hospital admissions and one medical issue and crisis after the other. Now, though slightly different, there are many similarities. When I explained to my mom this morning that I was going out to meet Ann, I could tell she wasn't happy about this. She wanted to come along and not be left behind. But I said no! 

It is a shame that my mom can't see why I would need this time to myself. Not only doesn't she understand and appreciate this, but after I came back from meeting with Ann. My mom was hostile as well as aloof. Then she asked me.... why I had to meet Ann and what did we have to talk about? My mom's level of paranoia can make me upset at times, and it is very clear that both of my parent's view their own needs first and foremost. 

Normally I meet my parent's every need. But this morning, I decided to do something for myself. After all, while I was away, this is what my parents were doing....... sleeping!

Once I got back from having tea with Ann, I put away all the laundry, started the dishwasher, and then got my dad up to the bathroom and into the car. 

Peter and I take my parent's out to brunch every Sunday. Each Sunday, we see Cheryl (our wonderful server). Cheryl loves to wear pins on her uniform. So for Valentine's Day, I gave her the red heart pin you see on her, and today I gave her a four leaf clover and card. I told her in the card that the four leaf clover is rare, and like the clover, she is one in a million.