Saturday, April 11, 2020

Saturday, April 11, 2020

Tonight's picture was taken in April of 2005. Mattie was three years old. That day I took him to the mall to get a picture with the Easter Bunny. This was the only photo we ever took with the Bunny. In fact the only copy I have of this photo is the original one from the mall. So naturally I took a photo of the photo so that I could have an electronic copy. I absolutely love Mattie's smile here! Mattie had a healthy fear of these large story book characters, but there was something about this bunny that made him seem okay and approachable. 





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

• number of people diagnosed with the virus: 522,286
• number of people who died from the virus: 20,283

After meeting Sunny's needs today, we decided to take a long walk. We walked 5.6 miles. We walked over the Key Bridge into Virginia. Walked around Roosevelt Island and then walked over Roosevelt Bridge to get back into the District of Columbia. So we walked in two states. The walking does help manage stress, anxiety, and lots of frustration with being in this virus lock down. 

Roosevelt Island never disappoints. While on the Island we saw several deer. 

Even a Great Blue Heron. It is wonderful to see greenery, birds, deer, and signs of spring. All things unaffected by the virus. Reminding us that there is hope and life won't always be like this. 

While crossing over the Roosevelt Bridge, we were looking at the Potomac River dotted with birds! I am talking hundreds of Cormorants all over the water. A sight we have seen in Florida, but never in DC.  

Friday, April 10, 2020

Friday, April 10, 2020

Tonight's picture was taken around Easter of 2005. That year we took Mattie to Bunnyland, an event held every spring at Butler's Orchard in Maryland. They had an Easter egg hunt for the kids and lots of fun activities (hayrides, pedal tractors, giant slides, and live animals). Mattie loved going to this farm every fall (for pumpkin picking) and spring! I am so happy Peter captured this cute photo of us, right before  Mattie went hunting for Easter eggs. 








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

• number of people diagnosed with the virus: 491,358
• number of people who died from the virus: 18,316

I am quite certain Indie understands that Sunny is not feeling well. She is sticking close. While we are in the living room with Sunny, she is hanging out by the windows. 

This morning, Peter took photos of Sunny's leg and text messaged it to the surgeon. Who was nice enough to give us her mobile number. She instantly responded and feels that Sunny's incision looks good and was pleased with his progress. I have cut down the amount of pain meds Sunny was getting, as the only thing it seemed to be doing was making him stupefied. Not to mention constipated. To address the constipation, she has us giving Sunny Metamucil and pumpkin. Can't say Sunny likes pumpkin. Pumpkin pie... yes, pure pumpkin... no!

This is Sunny's incision. I would say it photographs better than it actually looks. Thankfully I saw progress today with Sunny taking steps and bearing weight on this leg. 

Sunny is dealing with bruising and edema (swelling in which small blood vessels leak fluid into nearby tissues). So his leg needs an ice bag on it periodically throughout the day for 15 minutes at a time, and we also have to do edema massage which is rubbing the leg from the ankle on up using firm, but not painful, pressure to move the excess fluid out of the area. The massaging helps, because when I feel Sunny's leg, it feels like it is filled with a sac of jelly. Rubbing the leg does seem to help get this jelly feeling reabsorbed back into his body. 

 This is the extensive bruising on the back of Sunny's leg (the leg that was operated on).

 We got Sunny up and walking today.   He needs to start doing this for his   physical recovery, to aid his   constipation, and to help get all the   sedation out of his system. His Sunny   spirit seemed to perk up when   outside. But he tires very easily and   after his walk, literally came back   home and slept for several hours. 

Thursday, April 9, 2020

Thursday, April 9, 2020

Tonight's picture was taken on April 4, 2009. Mattie's 7th and last birthday. Mattie celebrated his big day in the hospital's child life playroom. His cancer buddy, Brandon, came to the hospital to spend the day with him. Mattie and Brandon were diagnosed around the same time, but after three months of treatment, Brandon went into remission. Nonetheless, Brandon returned back every couple of weeks to visit Mattie. Which was a big deal, since he lived over an hour away from the hospital. I love this photo as it still speaks to me about the power of friendship. 




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

• number of people diagnosed with the virus: 456,828
• number of people who died from the virus: 16,267

Sunny still remains very lethargic and looks to be in pain. He is on two different pain meds and the doctor's office called to check on him today. She feels he is doing okay, considering he had a big surgery Tuesday night. He is eating and drinking water, but is unable to walk on all fours yet. Typically Sunny wants to take walks, but he clearly knows he isn't up for it. 

We don't leave him for long, as we like to monitor him and make sure he isn't touching his stitches. But we did get outside for about an hour's walk. We would have continued our walk, but it was windy and beginning to rain. The sky in this photo says it all. 

Wind and rain while walking, seemed to capture the ominous world we are living in now. 

This afternoon, I was working in Mattie's room. Check out my colleague! Typically Indie stays with Peter, but today, she stuck close to me. She seems very aware of the fact that something is wrong with Sunny, and this is bothering her. 

Our boy getting some sun and fresh breezes later in the afternoon! Thank goodness for Sunny and Indie. As they keep us to a schedule and engaged with the world. 

A sunset from our living room window. 

Wednesday, April 8, 2020

Wednesday, April 8, 2020

Tonight's picture was taken in April of 2008. It was Mattie 6th birthday. That year Mattie wanted his party at a bowling alley. We literally invited his entire kindergarten class and a few preschool friends. The theme was Scooby Doo, as Mattie was a big fan of the show and all the movies. What you may not be able to see was while at the party, Mattie developed a fever. He made it through the party, but as soon as he got home, he went to lie down on the couch and fell asleep immediately. Which was unheard of for Mattie. 



Quote of the day: The coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 423,135
• number of people who died from the virus: 14,390

Poor Sunny waited in the surgical center yesterday for 12 hours before he went into the operating room. The center was dealing with many emergencies, so I am grateful that they found room for Sunny. 

At 9pm last night, Sunny's surgeon called us to give an update. She felt the surgery went very well, but the issue went beyond the ligament and impacted the meniscus [the meniscus is a piece of cartilage that provides a cushion between the femur (thighbone) and tibia (shinbone)]. 

Needless to say, we went to pick up Sunny at noon today. Because we aren't allowed into the center, everything is done by phone. So it took us over an hour of waiting until Sunny came out to our car. The hour wait makes sense, if you think about the fact that we needed to talk to the admin folks and then the tech who talked us through follow up care on the phone. When the tech brought Sunny out to the car, as soon as Sunny saw and heard me call his name, he perked up and tried to walk faster to the car. 

They gave us a sling to help Sunny walk. The sling helps us get up from a seated position. 

Peter and I have a lot of experience managing surgeries on limbs! As Mattie had three out of four limbs operated on during his cancer treatment. It is a bit daunting to see surgical incisions, and of course in Sunny's case, besides the incision, his beautiful fur was totally shaven off. 

A close up of the incision. Sunny's recovery is 8-12 weeks. In two weeks, he gets examined and then starts physical therapy for 6 weeks. At 8 weeks, he gets an x-ray to make sure the bones are setting and healing. He has a long road ahead and his movement is restricted significantly for at least 7 days. Including no steps. He is on three different pain meds and right now he looks sleepy and out of it. But I know that is better than the alternative. 

Sunny came home and was starving. He is happy to be home, happy to sit on his own doggie bed, and of course spent time on his 'yoga mat,' outside on our balcony.

Check out who flew onto our oak tree, right outside our living room? A big red tail hawk! 

Tuesday, April 6, 2020

Tuesday, April 6, 2020 -- Mattie died 549 weeks ago today.

Tonight's picture was taken in April of 2007. Mattie's fifth birthday party was held at the National Zoo. It was quite the day with intense rain. I really thought Mattie's party was going to be a disaster. But it turned out as a real adventure. The kids loved touring the zoo in the rain and every animal was out and about for the kids to enjoy. In fact, given the torrential rain, I would say that we had the zoo to ourselves that day. It made for a very special and memorable day. 

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

• number of people diagnosed with the virus: 387,547
• number of people who have died from the virus: 12,291

Peter dropped Sunny off at the surgical center this morning at 7:30am. It is now 7pm, and poor Sunny just got into the operating room. He has been waiting ALL DAY, given the number of emergencies that came into the center today. Under normal circumstances, I would be livid. But given that we are dealing with the virus, most surgical centers closed down, and multiple dog fight victims that came in, we really have no other choice but to be patient. Sunny absolutely needs this surgery and we are lucky that this orthopedic surgeon is willing to fit Sunny into her schedule. 

This morning I received an email from Adina, our child life specialist at Children's Hospital at Sinai (Baltimore, MD). She wanted to share a few photos and to also let me know that our ipad wheeled stands arrived. Not only have they arrived but they are already making a difference at the Hospital during the pandemic. 

Adina shared this story with me, and I think it truly illustrates how vital her role is and the incredible difference she is making in the lives of children with cancer and their families..................................................

When a mom came to the emergency department over the weekend because she was experiencing COVID-19 symptoms, she did not anticipate the turn of events that would separate her from her children.


She was admitted for respiratory support and her three children remained in the Pediatric Emergency Department over the weekend until a plan could be made for where they would go while their mother was being treated. When they were ultimately moved to the Pediatric inpatient unit, the child life team arranged comfort items in their room, including a variety of snacks and treats from the Mattie Miracle Snack & Item Cart.

Thankfully, their mother is doing better. Utilizing the iPad stands from the Mattie Miracle Cancer Foundation that just arrived today (and were ordered just last week), the child life team was able to coordinate for the children a video chat with their mother and they were reassured to see she was doing better. The iPad was wheeled into their room so Adina could introduce herself and child life services via the iPad and explain how they could use the iPad to video chat with their mother on the other side of the hospital.


The collaboration to normalize the hospital for these children was the combined effort of child life, nursing, doctors, and social work- the multidisciplinary team uniting during these difficult times.

Many times children and families get admitted to the hospital and do not have an ipad or laptop with them. This is a problem, because without these devices it gets harder to remain in communication with family and friends. The hospital has access to ipads, and they allow families to borrow them. But now with the wheeled stands, it is easier to bring these devices into patient rooms and secure the ipads so that they do not get misplaced or taken off campus. Now ipads can remain in patient rooms and when not in use, they can be cleaned and directed to another patient room in need of this technology. We know more than ever how crucial the internet and technology are during this pandemic. These devices keep us connected and sane. 

Monday, April 6, 2020

Monday, April 6, 2020

Tonight's picture was taken in April of 2006. We were at Mattie's 4th birthday party, which we held at Riverbend Nature Park in Great Falls, VA. That year the birthday party theme was dinosaurs. It was fun party, where a park ranger took the children on a nature walk in the woods and then had a pretend dinosaur dig in a very large sandbox. Plastic toy sized dinos were buried in the sand and the children had a great time digging and finding! After the walk and dig, we came inside for snacks, cake, a pinata, and finally a meet and greet with some of the nature center's animals. 



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

• number of people diagnosed with the virus: 362,759
• number of people who died from the virus: 10,689

We started our day at 6am. As Sunny had an 8am appointment at Virginia Surgical Centers in Vienna, VA. Sunny knew something was up this morning, since I was up early (which is unheard of), and we did not give him breakfast or water. We did this because we were told that Sunny could potentially have surgery after his doctor visit.

Trying to deal with a health issue while Coronavirus is going on is difficult. We are not allowed to enter the Vet's building, we can't meet the doctor in person, and everything is done remotely. Literally we got to the office, called on the phone to announce we were there, and then a tech came out to get Sunny.

Needless to say, Sunny needs a TPLO surgery. Which will be happening tomorrow.  The TPLO (Tibial Plateau Leveling Osteotomy) surgery has become one of the most popular orthopedic surgeries performed on dogs who have torn their cranial cruciate ligament, also commonly referred to as a dog’s torn ACL.

Developed by Dr. Barclay Slocum, the TPLO surgery was originally considered a radical procedure for addressing canine ACL injuries. Now in existence for over 20 years, the surgery has proven itself time and time again, to be an extremely effective long-term solution for addressing this injury in dogs, providing quicker recover and superior long term results.

The philosophy behind the TPLO surgery is to completely change the dynamics of the dog’s knee so that the torn ligament becomes irrelevant to the stability of the knee itself.

When a dog tears its ACL, every time the dogs goes to stand or put weight on the leg, the femur slides/rubs on the back of the tibia. This rubbing causes pain and inflammation, which is very uncomfortable. This is why most dogs with a torn ACL will not even put any weight on the leg, or if they do, they will just toe touch the leg to the ground.

The true beauty of the TPLO surgery is that it completely alters the dynamics of the knee. Once the bone is cut and the tibial plateau is rotated, where the femur and the tibia communicate, no longer can the femur slide backwards. The knee is immediately stabilized. By doing so, this eliminates the need for the ACL ligament entirely and returns stability to the joint immediately.

Today we also went grocery shopping. Who knew grocery shopping would be the major outing of the day! We come prepared with gloves and scarves. What surprised me is how many shelves are still empty. Forget paper supplies, cleaning supplies, and there were NO lemons and grapefruits! What's happening with citrus? Any case the manager of the store explained to us that in his 30 years of working in the grocery store industry, he has never seen anything like this. They can't stock the shelves fast enough and stores are allotted so many units of items per week. Once that supply goes off the shelves, the store can't do anything about it until the next week. Fascinating no?


Later in the afternoon, we took a 4.5 mile walk to Roosevelt Island. Normally we'd drive to the Island, park, and then walk around the Island. But the National Park Service has closed the parking lot. So the only way to get to the island is on foot or bike. So we walked over Roosevelt Bridge and saw kayakers in the water. 

We even saw turtles. Seeing some of the usual sights we would expect to see in the spring, provides us with hope. Consistency in our lives is important. 

A photo on our walk. You can see the Roosevelt Bridge behind us. We walked over that Bridge to get to the Island. 

The beauty on the Island. 

Beautiful blue bells. 

We used to take Mattie to this beachy part of the Island. He used to love it. Behind Peter, you can see Georgetown University in the distance. A campus that became our second home in 2008 and 2009. 

Washington Harbor in the distance. 

Green is unfurling on the Island. 

We even saw garden snakes. Mattie would have absolutely LOVED it. 

As we were walking back home over the Roosevelt Bridge, I snapped an overview photo of the Island and its wonderful boardwalk. 

Crossing over the Bridge, some cars going by, but traffic is significantly down in the city. The Kennedy Center was in the backdrop. 

The dogwoods are blooming!

Sunday, April 5, 2020

Sunday, April 5, 2020

Tonight's picture was taken in April of 2005. This was at Mattie's third birthday party. We had Mattie's first three parties at home and then by his fourth birthday, we started having parties somewhere else. For Mattie's third birthday we had a Blue's Clues themed party, since Mattie was in love with that TV show. We even had a student from the university come over and perform magic tricks. Tricks which included his pet rabbit. It was a very fun and memorable day for Mattie and us. 


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

• number of people diagnosed with the virus: 335,524
• number of people who died from the virus: 9,458

Last week I found out that a childhood friend of mine who lives in NY, lost her husband to the Coronavirus. If that wasn't bad enough, yesterday, I found out that my friend has been diagnosed with the virus and is hospitalized. Not that the virus wasn't real to me, but now it is even more personal. 

To keep our sanity, we walk each day. Normally we have Sunny in tow, but since he tore his ACL, he truly is unable to walk with us. So we first walk him outside, then settle him back at home, and then return out to walk. Today we walked four miles around the National Mall. We are very lucky to have access to all this wide open green space. Certainly we see people walking around, but with these big open spaces, we can easily social distance. 

We walked passed the Capitol and the Washington Monument. It was a lovely spring day and people were walking, biking, and jogging. It almost looked normal! Well emphasis on almost, as DC is NEVER this empty!

I love those hot pink trees. They are red bud trees. Which I never saw or even heard of before living in DC. These trees stand in front of the Natural History Museum. A favorite of Mattie's.