Saturday, March 14, 2020

Saturday, March 14, 2020

Tonight's picture was taken on March 12, 2009. Mattie was admitted to the hospital through the clinic and a friend stopped by and delivered a huge pretzel for Mattie. This was the food of choice Mattie requested and he was thrilled to receive it!


Quote of the day: That is one good thing about this world... There are always sure to be more springs. ~ L.M. Montgomery

Typically as Spring approaches everyone seems to be happier and freer. Unfortunately this is not happening this Spring as we are all enduring the Coronavirus. In reality the regular flu is just as contagious and far deadlier, yet that seems to be common place, and this virus is treated like the plague. Honestly I am just as concerned about the panic and hysteria caused by the media, because this is working people up into a frenzy.

In any case, we went to Mattie's school today to decorate his trees for his upcoming April birthday. I am scheduled to go to Los Angeles soon to help my parent's move. Therefore, I did not want to wait to decorate Mattie's tree in case plans change. 

We removed all the Christmas ornaments today and placed donut ornaments on the tree, as well as tied a new ribbon around each of Mattie's three trees. 

A close up of Mattie's Swamp White Oak tree! What you can't tell is that children and their parents were all around us. Now that kids are out of school because of the virus, you can tell families are already getting stir crazy already. Several parents came up to chat with us as their children admire our trees and how we decorate them. Sunny was a big hit with the children. 

This tree is a Yellowwood tree and it sits a few feet from the tree above. This is actually Memorial Tree #3. As #1 and #2 developed issues, so a third tree was planted. Yet this tree got hit and broke in half two years ago in a storm. With that the school planted a fourth memorial tree (the one above) at our request. 

This tree sits about 20 feet from the other two. This was the location of Mattie's original memorial tree planted in 2010. That first tree died from an oak tree bacterial blight disease. What you see now is tree #2, which is a Yellowwood. It is a struggling tree, which is why I call it Charlie Brown. Yet Charlie continues to hang on. I place ribbons on all three trees.

So in total, Mattie has three trees on the lower school campus. I refer to them as "Mattie's grove."

So I am standing near tree #2 with the gold ribbon. If you look in the distance you will see Peter in orange, two women, and Sunny. They are standing near tree #3 and #4. 

Meanwhile, I had a ladybug land on me today. I always view this as a very positive sign from Mattie. He was watching us and is with us. 

After tree decorating, we then took Sunny for a walk. Look at the glorious forsythia all abloom. Spring is happening and with that, I hope the warmer weather knocks out the coronavirus. 

Friday, March 13, 2020

Friday, March 13, 2020

Tonight's picture was taken in March of 2009. I absolutely love Mattie's impish expression as I took this photo. As you can tell he was going through his chicken nuggets and french fry phase! What Mattie requested to eat seemed to change every two weeks, or even every week. Depending upon how he was feeling. Of course, whatever he was willing to eat, we made sure to supply it. Peter recalls often to me the night he went out in search of Chef Boyardee. It was like 2am and Mattie insisted on having this pasta. Mind you he never had Chef Boyardee before, so I have no idea where this request came from, but Peter left the hospital and drove around until he found an open store. Peter almost hit a deer while driving, but he did come back with cans in hand. 


Quote of the day: Coronaviruses are a large family of viruses that are common in people and many different species of animals, including camels, cattle, cats, and bats. Rarely, animal coronaviruses can infect people and then spread between people such as with MERS-CoV, SARS-CoV, and now with this new virus (named SARS-CoV-2, which produces the disease we know of as COVID-19). The SARS-CoV-2 virus is a betacoronavirus, like MERS-CoV and SARS-CoV.  All three of these viruses have their origins in bats. ~ CDC

Sounds nutty, I'm sure, but today I attended my monthly licensure board meeting and with me I brought a roll of paper towels, disposable gloves, and my antibacterial windex. I literally sprayed down the tables, computer, the mouse belonging to the computer, and my chair. If I have to sit there for 4-6 hours, I don't want to be touching anything that has germs on it. 

Typically I am not a hand sanitizer fan and I don't consider myself to be a germaphobic person overall. Even when Mattie had cancer, I wasn't the mom who insisted my child travel around in a bubble, because I felt Mattie needed to be able to live his life, which meant going out in public, going to the playroom, and participating in activities. Cancer was hard enough, but isolation made it ten times worse. 

But a contagion to me is something else, and frankly because I don't know what we are dealing with and its extent, I am trying to be cautious. Several of our board members called into the meeting today rather than showing up in person. It is a little harder for me to do this as I chair the meeting, and sometimes I need to access actual files and paperwork. 

However, while in the meeting, I learned about the passenger on a JetBlue flight from NY to Florida, who tested positive for the Coronavirus. This is the first publicly reported case on a plane, so it catches all of our attention. How does someone decide to board a plane, when he suspects that he could have the virus and was waiting testing results? Shouldn't one have to wait for the results first?! Either case, as testing becomes more available (as I heard today through the President's 3pm briefing, that soon there will be drive-thru testing centers located in CVS, Target, Walgreen's, and Walmart parking lots all over the country), I think it would make sense to require testing results before boarding a plane. With the rapid testing procedure just developed, testing results can be obtained within 24 hours. Of course, the CDC is recommending that people NOT get tested unless they have symptoms. I get it, but I also get the need for public safety in the air. Either case, the article below states that JetBlue has banned this particular passenger from ALL future JetBlue flights. 


JetBlue bans passenger who notified crew after landing that he'd tested positive for coronavirus:
https://www.cnn.com/travel/article/jetblue-passenger-banned-coronavirus-trnd/index.html

Thursday, March 12, 2020

Thursday, March 12, 2020

Tonight's picture was taken in March of 2009. Mattie was in the clinic that day and was visited by United Airlines personnel. They came to visit the children and brought all sorts of gifts. Mattie received this cute teddy bear and a blue quilt. As you can see Mattie was beaming! I am not quite sure why he was so happy, because for the most part he didn't care for strangers or people who wanted to visit him. But I think because these individuals worked on airplanes, this intrigued him. As Mattie was all about the art of movement, locomotion, and the mechanics of transportation!




Quote of the day: Sometimes the most important thing in a whole day is the rest taken between two deep breaths. ~ Etty Hillesum


Peter tells me I could be a "prepper." Which is a person who believes a catastrophic disaster or emergency is likely to occur in the future and makes active preparations for it, typically by stockpiling food and other supplies. I don't like to think in doomsday scenarios, but given the news and what I saw happening in China and on several cruise ships, we realized that having supplies and food on hand are important. So slowly we have been stocking up our pantry over the course of three weeks. 

Who knew hand sanitizer would be a most valuable commodity!? In fact, if you try to buy some on the internet, it is like $40 a bottle. In any case, I went to the grocery store today, doing my weekly food shopping. I could tell just by the parking lot, that the store was busy! Which was odd to me on a Thursday afternoon, around 2pm. When I went inside, I could feel the level of stress and tension among the shoppers. I had one woman yelling at me to move my cart. It wasn't my cart mind you, but she did not want to touch it to move it herself so literally I did it for her before she freaked out. If that wasn't bad enough, the shelves looked practically empty, specifically for certain items like soup, pasta, canned goods, and other non-perishables! If you expect to find Clorox or Lysol, good luck! 

It is quite a social commentary. I made sure I stayed with my cart at all times, because for instance I got the LAST Morton Salt, and it was frenetic enough inside for me to know that if people saw an item they wanted in another cart, they would take it. Even checking out of the grocery store was a nightmare. People were very edgy waiting on line. In fact, one woman behind me was so nervous, I made her go in front of me to check out. Any case, after over an hour in the store, I was ready for therapy! If you don't feel uneasy about the virus yet, then tune into everyone around you, it will be a real wake up call. 

The news of what is happening to the cruise industry is down right scary. 
Today Princess and Viking decided to suspend all cruises for the next 60 days. Totally unheard of. Check out the article below if you want to read more. All I know is the level of panic people are feeling, the total uncertainty and anxiety over will one get sick, what will happen to me and others...... is how Peter and I felt for 14 straight months when Mattie had cancer. It was at the same coronavirus level of intensity, uncertainty, and panic. I recognize the signs in others now, because I have been there personally. I can't say that my experience with cancer gives me a better perspective now as we face a health crisis on a national level. It doesn't, rather this pandemic evokes similar feelings that we had in 2008-2009. 

Cruise lines Princess and Viking halt all cruises as coronavirus spreads:

https://www.cnn.com/2020/03/12/business/cruise-lines-princess-and-viking-suspend-operations-coronavirus/index.html

Wednesday, March 11, 2020

Wednesday, March 11, 2020

Tonight's picture was taken in March of 2009. That day Mattie had a visit from his friend, Charlotte. Together they created silk screens and this was Mattie's final product. He drew a picture of Charlotte and she was smiling. I do believe her friendship brought happiness to Mattie. There was always a sun in Mattie's artwork. It did not matter what medium he worked with, that telltale symbol was ever present.  


Quote of the day: Any fool can be happy. It takes a man with real heart to make beauty out of the stuff that makes us weep. ~ Clive Barker


Do you know dogs get the flu too? Sunny got a flu shot yesterday during his well exam and today he was not a happy camper. I knew it wasn't a good day for him because he never left our bedroom this morning. Typically as soon as Peter gets up, Sunny follows him downstairs for a walk and breakfast. When I got up this morning, Sunny was staring at me on the bed. He needed a lot of TLC, as he was lethargic, seemed to have an upset stomach, and diarrhea. Poor guy! So why put him through this and get a flu shot? Well because Sunny doesn't live in a vacuum and he is exposed to other dogs and to dogs in boarding where he can pick up the virus from shared water bowls and saliva. 

The origin of dog influenza started from a virus, known as H3N8, that had begun in horses and, somewhere along the way, transitioned into dogs. Also, a different type of virus is thought to have sparked another round of flu – the H3N2 from a bird virus that then transferred to dogs as well.


Dog flu, whether from birds or horses, developed and was transferred in very modern history. Because the viruses are so new, it means that dogs have not had time to develop an immunity towards them. That’s why, if exposed, 80% of dogs that come into contact with a dog flu virus will contract the virus and show symptoms.

The virus is mostly contracted through airborne particles (shared through canine coughing, barking or other activities that would transfer saliva particles), touch (with other dog bowls, dog park equipment) or transference from a human petting one dog and then their own dog. 

Symptoms of flu, not unlike with humans, include sneezing, coughing, runny nose, fever, lethargy, and loss of appetite. About 80 percent of the dogs who are infected with the virus will have only mild symptoms, with about 20 percent of infected dogs showing no symptoms whatsoever (these dogs, however, are still able to spread the virus). Most dogs recover in two to three weeks.

Needless to say, Sunny is lying low today. But I feel like I am getting bombarded at every turn with flu conversation.... both human and dog. 

Tuesday, March 10, 2020

Tuesday, March 10, 2020 -- Mattie died 545 weeks ago today. 

Tonight's picture was taken in March of 2009. We were all in the child life playroom at the Hospital, and celebrating the official ribbon cutting ceremony for the room. When Mattie was initially diagnosed in July of 2008, there was NO playroom at the hospital. Instead, the only space children had was in the hallways or their hospital rooms. I assure you it made life 10 times harder, as a hospital room is very confining, and having another space with activities made the time more bearable. Though the playroom was opened in the fall of 2008, the ribbon cutting took place in March. As you can see the Toys R Us mascot, Gilbert the giraffe, was on hand to celebrate the occasion and gave Mattie a high five. 


Quote of the day: Perhaps I know best why it is man alone who laughs; he alone suffers so deeply that he had to invent laughter. ~ Friedrich Nietzsche

Yesterday, March 9th, we experienced an amazing moon. The worm moon is the first full moon in the month of March. The moon in March has a lot of different nicknames: the Worm Moon, because the ground begins to thaw and earthworms reappear, soon followed by the return of robins.

Peter captured this wonderful Mattie Moon from our living room!

Sunny had his senior well visit today and before taking him, we took him to Roosevelt Island for a 3 mile walk. Along our journey we saw this momma dear with her baby. Peter and I were talking so I did not even see her, it was Sunny who stopped in his tracks and had a staring contest with the deer. 

The baby. Of course whenever I see a momma animal and her baby, I can't help but think of Mattie. As Mattie loved to tell him that these animal pairings were like him and me. 

Monday, March 9, 2020

Monday, March 9, 2020

Tonight's picture was taken in March of 2009. As you can see it is a photo of a body scan. The prosthetic parts light up in the scan, and it showed that Mattie's three limbs had bone tumors removed, and the bones were replaced with prosthetics.  You may also see a string like thing coming from Mattie's body on the left side. That was an IV line going into Mattie's broviac in his chest. It was how Mattie received fluids, chemo, and blood draws. This provided a direct access to vessels near the heart. 


Quote of the day: After you find out all the things that can go wrong, your life becomes less about living and more about waiting. ~ Chuck Palahniuk


I think tonight's quote sums it up well, especially as it relates to the Coronavirus. Each day we all seem to be waiting for the next shoe to drop. That is on the macro level. On my micro level, I would say this quote captures the struggles I have physically since Mattie died. I honestly have very few days without some sort of problem. 

This past Friday, I began having pain. At first I thought it was muscular and tried to block it out of my mind. However, by Saturday that wasn't possible. I have four issue areas: head, bladder, kidneys, and gynecological area. Ironically the last three can be interconnected and also produce similar symptoms. By Sunday, I had convinced myself that something was very very wrong. So much so that I reached out to my gyn-oncologist. This woman has been in my life since 2012. Back then my urologist prescribed a CT scan of my bladder, and instead of finding a bladder issue, the radiologist said I had most likely a rare cancer of the cervix. You can imagine how I reacted to that. I literally saw four different gyn-oncologists to consult on my treatment. I saw four doctors and I got FOUR different opinions. No one seemed to agree with the other. The doctor I decided to go with was the one who seemed like she was no nonsense and felt that I did not have cancer but none the less had to monitor me every month to every three months. In the end I made the right decision and she advised me well. 

I am telling you this story because I text messaged this doctor on Sunday. YES I have her cell phone number! A rarity in the medical profession. She answered right back and wanted me to have a pelvic and transvaginal ultrasound today. I will never forget taking this test for the first time years ago. It is very invasive and a shock at first, but when you know what to expect, it's more manageable. 

I couldn't sleep last night as my head was playing through scenarios about what my issue was and honestly I was worried and worried about how this would impact Peter. The first thing I did this morning was start calling around to get an appointment for the ultrasound. I was determined to get it done today, regardless of where I had to go. The radiology place I go to is excellent because after each scan or procedure, the radiologist comes to talk with you. So I knew the results right away. Fortunately I do not have cancer and my gynecological issues are stable. But remember I still have the pain. 

So I eliminated one issue and now had to pursue bladder and kidney issues. Which led me to dropping off a urine sample today at a local testing center (that my doctor chose). This particular testing center was a total nightmare. Bad enough that when I got home I wrote a formal complaint. The center is NOT manned by anyone. If that isn't bad enough, picture a testing center without a enclosed or confidential space. The testing center has NO waiting area and the sign in desk is part of a hallway of a building. I am telling you it's nuts. There were electronic check-in stations and that is the only way to get checked in. Meanwhile there were older patients there who did not understand the process, much less how to use the machines. Therefore they weren't getting registered in for their appointments. 

Finally a woman came out to help process people waiting in the building's hallway. Keep in mind there is also the coronavirus roaming around, so doesn't it make perfect sense to have a testing center in the midst of a busy hallway?! I am being facetious if you couldn't tell. But it gets better, when I finally talked to the receptionist, she proceeded to give me a hard time. She couldn't find my doctor's order in her system and then when she did she directed me to the back area, where patients were being given blood draws and other procedures in order for me to leave my urine sample. To me, this should be violating the standards that regulate a medical facility as I could see the names of other patients, I could see their samples, and everything about this seemed very wrong. I swear if I didn't have the ultrasound first and knew those results, dealing with this woman would have sent me truly over the edge. This is a woman who shouldn't be working with people, and yet here she is interacting with vulnerable patients who maybe ill or worried about their testing. Frankly she could have cared less, we were all a nuisance to her. 

The only bright spot in all of this is I have a team of great specialists who I can turn to. Two out of the three, I have their cell phone numbers. I don't abuse it and only reach out when I deem I have a problem. So one specialist down and two more to go as we try to figure out my issue. 

Sunday, March 8, 2020

Sunday, March 8, 2020

Tonight's picture was taken in April of 2006. Mattie was sitting with several of his preschool classmates, as he celebrated his fourth birthday at Riverbend Nature Center and Park in Great Falls, VA. The kids had a great time that day as they went on a woods walk with a naturalist, did a pretend archaeological  dig in a sandbox, and even got to meet and pet some neat animals. The party theme was dinosaurs because Mattie was into them that year, and he even had a dinosaur cake and pinata. 


Quote of the day: When you’re happy you enjoy the music, but when you’re sad you understand the lyrics. ~ Frank Ocean

It was a beautiful weather day in Washington, DC today and we wanted to take Sunny to Great Falls park. But apparently half of our region had the same notion. Traffic to get into the park was intense and once at the entrance we found that park police were turning people away. Of course since we drove out to Great Falls with Sunny, he expected a walk. So after 14 years, we went back to Riverbend Park today. The last time we were there was for Mattie's 4th birthday. It is a very pretty place to walk, and just like the name implies, the park runs along the Potomac River. 

It is hard to believe that just a few miles from this spot the water looks like raging rapids (at Great Falls Park). But at Riverbend, things are calm and peaceful. It was a dog's paradise today. As for Sunny, he got a lot of attention from adults and kids alike. All wanting to pet him or ask..... what type of breed is he?

Sunny got a four mile walk in today and you'd never know he is a "senior" dog.