Saturday, April 16, 2022

Saturday, April 16, 2022

Tonight's picture was taken in April of 2009. Mattie received this singing birthday card from his school counselor. He absolutely loved it. It played a very cute song and featured I believe guinea pigs. Either case it brought us laughter and moments of entertainment while stuck into a two by four of a room. 

Quote of the day: They say a person needs just three things to be truly happy in this world: someone to love, something to do, and something to hope for. ~ Tom Bodett

The vet finally called me today. I was getting very frustrated, because I called this morning to track the doctor down again. At 4pm, he called me. Better late than never. He told me that Sunny's urine test did not show anything remarkable. Thinking this was good news, he then told me that sometimes cancer cells are not shed into the urine. Delightful. So we know NO MORE than we did earlier in the week. He now recommends more testing, 12 hours of it to be specific. 

Basically he wants to rule out adrenal cancer. He says Sunny's adrenal glands are very swollen, and also asked if I have seen any of these symptoms in Sunny:

• Weakness.
• Shaking.
• Collapse.
• Lack of appetite (anorexia)
• Lack of energy (lethargy)
• No interest in usual activities (depression)
• Vomiting.
• Panting.

The answer is NO! The vet feels we need to know more about the adrenal glands before addressing the huge mass in his bladder and spleen. Naturally none of us know whether any of these masses are cancerous. However, he indicated that the bladder and spleen could most likely be addressed through surgery (maybe), but that he can't proceed without knowing more about the adrenals. 

Adrenal tumors can secrete hormones into the blood and also raise blood pressure. Therefore, Sunny is going into the vet clinic on Monday for about 12 hours. During that time, he will get a blood test every four hours to monitor adrenal hormone levels. He will get his blood pressure taken over time as well. 

The vet asked if I ever noticed Sunny urinating in small amounts, having difficulty urinating, or having accidents in the house. The answer is NO! Other common symptoms of bladder cancer are discolored or bloody urine, and persistent urinary tract infections that are resistant to treatment. To me, Sunny has no symptoms of bladder or adrenal cancer. But then again, I saw this same thing with Mattie. He too did not have long standing problems. His arm pain came on suddenly and like Sunny, I would never have even thought of cancer. Sunny of course presents with NO pain, no symptoms. The only reason we are having this discussion is because his routine wellness ultrasound found these masses. I believe in addition to testing his blood for adrenal hormones, Sunny is also getting a BRAF test. BRAF is a genetic mutation that is identified in around 80% of dogs with transitional cell carcinoma in the bladder and prostate. The Cadet BRAF test is PCR based genetic test that allows detection of this mutation in the urothelial cells that have been shed in the urine.

All I can say is NOT again. Really, this is just too much to take. 

I share this photo that Peter took in our backyard last night. Reflections of the trees in the pool. But look at that Mattie Moon!

Friday, April 15, 2022

Friday, April 15, 2022

Tonight's picture was taken on April 4, 2009, Mattie's 7th and last birthday. That day we had a small party for him in the child life playroom of the hospital. Mattie went into the playroom in the morning and started decorating it for his friends, who came after school that day. It was a happy moment for Mattie and the child life team really worked hard to make sure Mattie and his friends had a great time. After all for Mattie the hospital was like a second home, but for children in general, a hospital can be a scary place. Child life understood this and thought about all the issues that could arise that day, making my job easier, as I could then focus on Mattie. 

Quote of the day: The human capacity for burden is like bamboo – far more flexible than you’d ever believe at first glance. ~ Jodi Picoult

This morning I was at the breakfast table with my dad. I took another approach today. I went on-line and downloaded the memory care center's schedule of activities and meals for each day. I decided to prep my dad for the day ahead at the Center, in hopes this would help him engage with the activities and potentially remember something. At 10am today, the schedule said "violin with Anthony." I immediately stopped in my tracks. I knew immediately who this was! Do you see this photo taken in March of 2009 at Georgetown University Hospital? The man on the right, playing the violin, is Anthony! Anthony knew Mattie very well. Mattie loved all the visiting artists, and the artists knew him. Mattie was a very memorable fellow. So much so that when my friend Margy was treated at a Northern Virginia hospital, Anthony came one day to entertain the patients. Margy started talking to Anthony, and when she learned he also volunteered at Georgetown, she asked if he knew us. Of course his answer was YES. ALL these years later and Anthony still volunteers his time at hospitals, nursing homes, and even my dad's memory care center. A special person!

Any case, I told my dad this story about Mattie and Anthony and I told my dad to ask Anthony if he worked at Georgetown. If he did, then he should let Anthony know that he is Mattie's grandfather. My dad may not remember much, but he actually remembered our conversation. A conversation I went over repeatedly at breakfast and then the car trip to the Center. Indeed the Anthony we knew at Georgetown is the SAME Anthony at my dad's memory care center. My dad and Anthony had a lovely chat today apparently. I consider these little moments yet another gift Mattie left behind for me.

I forgot to share this photo. But on Wednesday, the day after my dad's birthday, I made a 6 pound leg of lamb. I literally braised it for six hours in the oven. It was delicious and all of us loved it, including Sunny. For years I thought cooking a leg of lamb was difficult. But I decided to just try it this week, and I learned it was SUPER easy. Nothing to fear. 

The flowers are blooming on the farm. The beauty of our cherry trees. 

Meanwhile, I was supposed to connect with Sunny's vet today. Peter and I are awaiting on pins and needles. The vet told me to call him at 1pm today. So I did! Turns out when I called he left for the day. Who does this? I am awaiting Sunny's test results and next steps, and Sunny is an important member of our family. Not to follow through like you promised me doesn't win you points in my book. I conveyed my feelings about this to the clinic and they promised me the doctor will call tonight or tomorrow. He just better is all I can say. So we wait.

Thursday, April 14, 2022

Thursday, April 14, 2022

Tonight's picture was taken in April of 2009. This was "magic time with Mattie." Mattie's head of school, "the magic man," was fantastic with Mattie. He came to the hospital almost weekly and taught Mattie to perform magic. Mattie loved it because it was a skill that required manual dexterity and not gross motor movements. Magic stimulated Mattie's mind, it made him feel special and unique, and it also provided him with an outlet to connect to others around him. As you can see, Mattie's audience that day was the chaplain, an art therapist, and his child life specialist!

Quote of the day: Life is truly known only to those who suffer, lose, endure adversity and stumble from defeat to defeat. ~ Anais Nin

Another challenging day for multiple reasons. My dad's physical therapist came over today, and after the session, he told us it was his last session with my dad. Now if I want my dad to continue to receive services I have to find another home health care agency or take him to outpatient therapy. Delightful! Clearly this fellow thinks my plate isn't already full. Thankfully I spoke to my dad's memory care center about this and they told me about two companies they work with who come into the center and bill on Medicare part B. So I called both today and after a lot of calls and emails, I got my dad signed up. Fortunately the doctor easily complied and sent in the script to the home health agency so we can get started. But I feel like a hamster on a wheel that keeps on turning, and turning, and turning. I jump from one thing to another and don't feel like I manage anything well. 

On top of all of this, the licensure board, which I used to chair, reached out to me. They have asked me to be a witness on a case brought against the DC government regarding licensure laws. The case is so ridiculous, I have to wonder how it even got this far. A licensed professional in another state, is saying that she should not have to get licensed in DC to work with DC clients. That this is a first amendment, free speech, violation. As if all therapists do is talk. If all we do is talk, then why get a degree, do practice internships, and get licensed anywhere? If she wasn't licensed in another state I could perhaps understand her confusion. But this is a licensed professional making these statements. It boggles my mind and I will be spending the weekend going through countless court documents. 

We took my dad to a special lunch today at a restaurant I love. It was another warm day, so we had the pleasure of sitting outside. The outdoor terrace at the restaurant used to look like this! To me this was charming and a true retreat. However, due to COVID, the restaurant clearly went through an overhaul and they totally revamped their patio. 

Needless to say it doesn't look like the photo above anymore. It has been striped of its charm, elegance, and greenery. Which saddens me. 

But I think what ultimately saddens me is trying to eat with my dad. I frankly don't think it matters where he eats, the experience would be the same. McDonald's or fine dining, I truly don't think he notices the difference. He can eat something and the next MINUTE you ask him what he just ate and he had NO IDEA. I mean NONE. He eats super fast, typically has his head down, and does NO talking whatsoever. It truly is emotionally taxing each and every day. When he isn't eating, he needs to go to the bathroom, and of course that means that there is no down time for me. I am constantly on the edge and jumping up and down. I am working hard to give my parents some sort of quality of life but in the mean time, I have NONE. I try to also put this into context and most times I can snap myself out of a funk. But I would be lying if I said this wasn't difficult. 

Wednesday, April 13, 2022

Wednesday, April 13, 2022

Tonight's picture was taken in April of 2009. Mattie was being discharged from the hospital and as you can see he accumulated MANY birthday balloons over the course of that particular admission. Honestly when I look at this photo I have absolutely NO IDEA how Mattie could smile. Given all that he was enduring and how he was feeling, he truly was a remarkable fellow. One thing was for certain and that was Mattie trusted Peter and me, he believed we were making the best decisions for him, and together we were a strong three-some. 

Quote of the day: In deep sadness there is no place for sentimentality. ~ William S. Burroughs

Today was my dad's first time at the adult day memory care program. I honestly did not know how it was going to go. On the car trip over to the center (it is only a ten minute drive), my dad asked me repeatedly where we were going. Why he was going, what he was going to do there, and the list went on. By the time I got to the center, I was wondering whether we should just turn around and go home. But I got out of the car, and got him to the front door. There were many drop offs happening at one time, so in my opinion it was chaotic. We waited by the front door for a minute until someone came to unlock it and help my dad inside. I wasn't allowed inside, so I had to tell them who my dad was, hand them over a change of his clothes and depends undergarments, as well as a check for the month of April. Hoping of course that all these items went to the correct place or person. I am very type A, so given the chaos I saw, I left with very little confidence. 

As soon as I got home, I wrote to one of the staff members at the center and told them that I dropped off my dad and left his items and check with someone at the front door. My dad spent four hours at the center and Peter and my mom picked him up at 2pm, because I was at my annual physical exam. 

When I got back home, I asked my dad about his day! He remembered NOTHING. I mean NOT ONE THING!!! He had no idea even if he had lunch there or had a snack. I know he must have given the center's schedule. But it is a scary notion that he can't remember one activity, one person, or even whether he ate. In all reality he could be doing God knows what there, or not do anything at all. Without seeing it for myself, I am truly working in the dark. Which doesn't fit my personality. 

I also noticed that my dad came back home today without his red fleece, the jacket I dropped him off with. Again this to me is sloppy and shows a poor level of organization. When you are caring for a large number of people, organization and a system are crucial otherwise this happens. I am hoping to track down his fleece and learn their system. Because I can't have his jackets and things disappearing on a regular basis. Mind you I asked whether items needed to be labeled before I dropped him off. I was assured this wasn't necessary. 

Meanwhile, before going to my physical, I started cooking a big leg of lamb. It is my Easter treat, as I am not cooking at home on Easter Sunday. Instead we are going out. I had hoped to plan a dinner and have close friends over, but I just don't have it in me. A rather sad commentary for our first Easter in our new home. In fact, there is very little joy in having a new home, given all that I am balancing on any given day. When I got my blood test results back today, I was expecting total chaos in the data, given how I am feeling. Fortunately I remain stable overall, but I am glad my doctor is having me take a CT of the heart and to get a coronary calcium score, because given my parent's history, I want to be very proactive. 

Tuesday, April 12, 2022

Tuesday, April 12, 2022 -- Mattie died 654 weeks ago today. 

Tonight's picture was taken in June of 2009. This was at Mattie's second birthday party! It was held in the backyard of my friend's house and Reptiles Alive came and did a fabulous presentation for the children. As you can see our friend, James, even dressed up like a roach and presented Mattie with a roach shaped cake. Mattie was into the whole notion of roaches, particularly because he knew it creeped me out! It was a party to remember.

Quote of the day: Life's under no obligation to give us what we expect. ~ Margaret Mitchell

Today is my dad's 87th birthday. I got him up, showered, dressed, and downstairs for breakfast. We surprised him with a BIG balloon and gifts. It was a busy day for him with an occupational therapy session, a visit from my friend Ann, phone calls, and even a walk outside. 

It was a glorious weather day, and it was the first time my parents got to have lunch outside on our porch. Seems like a very fitting place to celebrate a birthday. Outside in nature. 

My dad with his big balloon. Peter bought this great big balloon and I think it is perfect, as my dad can't miss seeing it and it reminds him about his birthday. 

This was one of the gifts we gave my dad today! One of the things he still loves doing is EATING!

In the midst of what should be a happy day, I took Sunny to the vet for a routine senior ultrasound. Sunny's new vet told us he likes to give ultrasounds on older dogs to try to catch issues before they arise. Sounded good to us, so I booked today's appointment. 

As soon as the vet came into the room, I KNEW something wasn't right. I have gotten good at knowing when BAD news is coming my way. This is a doctor who is typically jovial and a talker. He came in serious and very scientific. 

Make a long story short, Sunny has a huge mass in his bladder, a mass on his spleen and has swollen adrenal glands. The vet asked me if Sunny has been lethargic, drinking more water, and urinating more. Honestly the answer is NO! To me Sunny has NO signs of any issues. In fact, when the vet came into the room after the testing, his first question to me was.... remind me, why do you think we were doing today's test? My response was, you said this was a good idea to do as a preventative for senior dogs. Of course I knew this was a leading question because what he found was NOT something any of us were expecting. Naturally I wanted to know why his former vet never found any of this, as masses like this don't grow overnight. His response was these masses can not be detected by examination and touch. Which is why he recommends an ultrasound for his older patients. 

Today's visit reminded me of when I took Mattie in for a routine x-ray! Within minutes I went from living a normal life, to facing the worst nightmare possible. Which is why any kind of testing makes me anxious. You just never know what these assessments will find. The vet has asked for me to give him more time to figure out next steps for Sunny, as we are talking about multiple masses, and he is waiting for Sunny's urine culture to also come back. So Friday we chat with the vet again and this time, I am pulling Peter into the conversation. If you couldn't tell from Mattie's blog, I LOVE Sunny. I may have rescued him, but in so many ways he has rescued me.

Monday, April 11, 2022

Monday, April 11, 2022

Tonight's picture was taken on April 4, 2009, on Mattie's 7th birthday. This was Mattie's last birthday with us. He had a party both in the hospital and at a friend's house. Next to Mattie was Brandon. Mattie and Brandon were diagnosed around the same time. They were ten years apart, but this age difference did not affect their connection. They understood and appreciated each other. Brandon's treatment lasted about three months. However, after his treatment was over, he consistently came back to the hospital to visit with Mattie. Truly a devoted friend and I learned a lot from their beautiful friendship. 

Quote of the day: You may not control all the events that happen to you, but you can decide not to be reduced by them. ~ Maya Angelou

Indie is a funny cat. As it begins to turn to spring, she desperately wants her outdoor time. We trained her when we lived in the city NOT to leave our deck. However, there are too many temptations in the backyard of our house, so we know she can only come outside on the porch if we are there with her. Indie loves smelling the breezes and she is very interested in birds. 

Meanwhile, Sunny regally sits in the backyard. I got up this morning at 6am because I had things to do before I got my dad up at 8:30am. Literally the first time I sat down today was around 5pm. It was non-stop tasks and work. 

At around 12:30pm, I decided to take Sunny for a walk. I look forward to my walks to clear my head and get fresh air. However, today's walk was a nightmare. Sunny was limping and I felt I was dragging him home. Basically I can't catch a break anywhere. 

Fortunately we have a vet appointment tomorrow, because the vet is giving Sunny a diagnostic ultrasound for preventative purposes (as tumors can form at Sunny's age and if caught early, they can be removed by surgery). Naturally I will have the doctor examine all of Sunny's limbs and paws. Sunny is 10 years old and is considered a senior dog. Not something I like hearing about, as the vet was preparing us for the fact that Sunny maybe coming to the end of his life. You can imagine when he started down this road with us two weeks ago, I wasn't having any of it.

Meanwhile, my day was filled with one chore after the other..... changing bed linens, laundry, making breakfast, lunch, and dinner, doing brain games with my dad, and having him walk in ten minute increments. The weather was pleasant this afternoon, so I brought my dad outside to walk for ten minutes. Walking outside wiped him out, and he got about half way down our street, and I turned him around to go back home. Fortunately his outdoor walker has a built in seat, as I had him take two rest breaks. Tomorrow is my dad's 87th birthday, and despite the chaos we live in, our goal is to make it a happy day for him.  

Sunday, April 10, 2022

Sunday, April 10, 2022

Tonight's picture was taken in April of 2008, at Mattie's 6th birthday party. That year we had Mattie's party at a bowling alley. The theme was Scooby Doo, a Mattie favorite. While at the party, Mattie developed a fever and looked exhausted, but he hung in there and had a good time with his friends. Who would have ever guessed that three months later, he would be diagnosed with cancer. 

Quote of the day: He who believes is strong; he who doubts is weak. Strong convictions precede great actions. ~ Louisa May Alcott

After sorting through all the toiletries that have come in for the Foundation's Item Drive, I gathered them altogether and photographed the final result. As always our donors have been extremely generous with us and these items will be going to three different hospitals to stock our Snack and Item Carts. I know all too well how important these items are to the recipients. 

Peter has had a very busy weekend. Of running back and forth to the nursery and then staging and planting flowers and plants. It was cool and blustery today, but that did not stop him. This is just one of his many creations! I told him he missed his calling. Typically he leaves the plantings up to me, but I think he does a better job than me. 

As for me it was another typical day in paradise. Juggling too much and now trying to put together the April newsletter for the Foundation. Some days I really wonder how I can string two words together much less write a newsletter and keep the Foundation running.