Saturday, September 3, 2016

Saturday, September 3, 2016

Tonight's picture was taken in September of 2008. Mattie was a month into chemotherapy and frankly none of us knew if we were coming or going. Living in a PICU 24 hours a day, 7 days a week was very disorienting because the lights and sounds are loud at all hours. So truly day and night are indiscernible. Mattie was sitting on a cot in his room, a cot where Peter slept each night (I slept in a chair), and Mattie was getting an infusion of a drug to help boost his immune system. As you can see I attempted to put my head down just for a few minutes since I was running on practically no sleep. Despite Mattie not sleeping at night either, he was wide awake and smiling at the camera!


Quote of the day: Don't find fault, find a remedy. ~ Henry Ford

Today Sunny had his first grooming appointment. We were going to go to a different groomer tomorrow closer to our home but after reading mixed reviews of the place, I decided to call another place today. A place we had toured two weeks ago for boarding. This is what Sunny looked like before grooming. His hair was matted, too long, and the smell radiating from him was overwhelming. 

This is the after photo! As my lifetime friend Karen says.... he looks like he is coming down the runaway. He is a handsome fellow!

 The back of Sunny!

We try to walk Sunny four times a day. He is really good for it. He loves walks and exploring. But he is also very smart. We have been blocking off the base of our staircase, so that Sunny is downstairs with us and Indie (the cat) has free roaming upstairs. Well Sunny has watched us for a day and has observed how we get passed the barricade. Don't you know it that when we went upstairs today, he did not want to be alone. So he found a way around the barricade using our strategy. Rather frightening in a way! Any case, Sunny is now parked in Mattie's bedroom while I am on the computer. He is waiting patiently outside the closet door trying to coax Indie out to greet him. They had some chance encounters and its went so so. Overall Indie is not happy with this new addition to our family, but we are now taking the strategy that they have to work this out themselves. Our intervening isn't helping. Of course we monitor them, but it has to be on Indie's terms. 

Friday, September 2, 2016

Friday, September 2, 2016

Tonight's picture was taken in September of 2007. Mattie was walking JJ, our resident Jack Russell Terrier. JJ and Mattie practically grew up together. In fact Mattie loved dogs and always wanted a dog of his own. In time, we probably would have made that wish possible. But with Mattie's cancer diagnosis that never happened. 

JJ was very attached to Mattie and after Mattie died, JJ visited our doorstep daily and would just sit there. He refused to eat and held tight to a sandal of Mattie's. Any one who says dogs don't grieve, has never gotten to know a dog. 



Quote of the day: Do the duty which lies nearest to you, the second duty will then become clearer. ~ Thomas Carlyle

Look who entered into our lives today. This afternoon, Peter and I went to pick Sunshine "Sunny" up at his foster parents home in DC. Sunny actually arrived in DC from Pickens, SC when I was in LA. Fortunately the rescue organization found a wonderful foster mom to care for him during that two week interim, which helped Sunny transition to a home.

We learned that Sunny was basically abandoned by his original owner in South Carolina. Sunny was found wondering along a highway and when the authorities tried to return him to his owner, the owner refused to respond and take Sunny back. So Sunny landed up in a kill shelter, which means that 90% of animals in the shelter are killed if not adopted within a period of time. 

Why Sunny was abandoned is perplexing and mind boggling actually. Sunny is calm, compliant, friendly, easy going, and LOVES people, kids, and other dogs. I know because I walked him passed lots of people, children and other dogs today! He is friendly and loves people petting him and also enjoys sniffing other dogs. Along our various walks today we bumped into people who wanted to talk with us, and when we did this, Sunny just sat still and patient until we were finished. Not tugging at the leash!

Peter and I got MANY walks in today with Sunny. He LOVES walking and I might add briskly. I almost need running shoes on to keep up with him. However as the day wears on and he gets more exercise, then he does slow down. But he was excited to be out and is truly curious and observant. 

One thing Sunny loves however is chasing squirrels and in DC, rats. He is like a hound dog and can smell a rat many feet away. What he does when he sees a squirrel is something else. If you don't have a good grip on his leash, he would take off and be on the hunt!

This is the nose to nose meeting of Indie meeting Sunny. We are being very cautious with Indie because she is our girl and want he and Sunny to get along. Therefore we are letting her meet Sunny on her terms. She is still staying clear of him tonight, but has been daring several times today and has come downstairs and walked in front of him. He desperately wants to play with her and basically whines because she isn't complying!

Thursday, September 1, 2016

Thursday, September 1, 2016

Tonight's picture was taken on October 1, 2008. A day I will never forget. We took Mattie to NYC to be seen by two doctors at Memorial Sloan Kettering. One doctor was the head of oncology and the other an orthopedic surgeon. What was happening in this photo, was we were waiting for the surgeon to grace us with his presence. We waited HOURS for him. He had NO regard for his patients or their families, and then when we finally got into see him, he spent five minutes with us because he had a PRESSING social function to attend. He did not score points in my book and the whole Memorial Sloan Kettering experience was a nightmare. The head oncologist questioned why we even wanted to treat Mattie, because from his opinon NO ONE like Mattie ever lived to survive. So he recommended that we NOT provide treatment but simply palliative/end of life care. There was a lot wrong with this. He may have been accurate medically but psychosocially he was clueless. If I elected to do nothing and naturally Mattie would have died, I would have felt guilt and regret all my life as a parent, because I didn't do everything possible. To me this doctor, and the surgeon were unethical and inhumane and if I never see Sloan Kettering again that would be just fine by me. 


Quote of the day: Give the world the best you have and the best will come back to you. ~ Madeline Bridges

Today while I was out and about, I ran into two people who started chatting with me. First I have to qualify I was in Alexandria, VA NOT DC. Rarely will strangers have a conversation with you in DC. Like most major cities, people typically keep to themselves and mind their own business. However, the first person who started talking to me has grandchildren and was chatting about how they are learning to drive and the complications associated with that. Naturally after watching a 17 year old go 55mph in my parent's neighborhood (last weekend( and then land in their tree, I feel like I have first hand knowledge of the problem! But the reason I am writing about this tonight is because the man then turned to me and asked if I had children and were any of them driving. 

It is interesting no matter how many years Mattie has been gone, you just never know what situations will present themselves. Sometimes you are prepared for them and at other times they just happen. Like today. However, he was a nice man and really meant no harm, so clearly I wasn't going to start lecturing him. So I simply said no. Mattie would be turning 15 this year, and soon in theory could be applying for his driving permit. It puts things into context doesn't it?!

This morning I participated in a webinar. The webinar was on the psychosocial impact of childhood cancer! I can't tell you how BIG this is! The NIH typically highlights biomedical care and treatment, so to have a webinar on the FIRST DAY OF CHILDHOOD CANCER AWARENESS MONTH devoted to this topic is historical in my book!

As for a webinar, you basically can see and hear the speakers by logging into a website, but in this particular case if you wanted to ask questions, you had to submit them through Twitter. Not my favorite social media platform. In any case, Peter and I worked on questions ahead of time and submitted them last night, which helped the moderator today. Then throughout the hour long webinar, I got on Twitter and submitted additional questions. The moderator of the webinar was Dr. Maryland Pao, who is the Clinical Director of the National Institute of Mental Health. Maryland is also part of the psychosocial standards team and worked with us since 2013. On the webinar panel was Dr. Lori Wiener, who is the co-director of the Behavioral Health Core and head of the Psychosocial Support and Research at the National Cancer Institute. Peter and I know Lori because we have worked closely with her since 2012, to develop the National Psychosocial Standards of Care. Lori co-led this project. 

If this topic interests you, I encourage you to watch the webinar by clicking the link below. I was thrilled to see Mattie Miracle acknowledged!


NIH Webinar on the Psychosocial Impact of Childhood Cancer:

https://plus.google.com/events/cn9j610ip3mpots5i7f5m30t3j4?hl=en

Wednesday, August 31, 2016

Wednesday, August 31, 2016

Tonight's picture was taken in September of 2007. The same month Mattie began kindergarten. Mattie had overcome many other issues prior to kindergarten, but thanks to early interventions with speech and occupational therapy, these issues were not discernible. Mattie loved going out with Peter on the weekends to row on the Potomac River. Mattie enjoyed being on the water, fishing, and having this special time with his dad. On occasion, like in this photo, they invited me along. 


Quote of the day: The art of life is to know how to enjoy a little and to endure very much. ~ William Hazlitt

I think Indie, our cat, is truly confused. I came home last night and was unpacking, and while I was doing that, Peter was packing. Peter had a business trip to Nebraska today. 

I received a few photos along Peter's journey. This was one of the signs at the Nebraska airport. I love Peter's description of flying to the Midwest. Mainly because when you fly to either the West or East coast, there are NO conversations between strangers on the plane. 

That is definitely not the case flying to the Midwest. On every flight to the Midwest that Peter has been on, people are talking to each other. They strike up conversations with him and typically the chatting lasts the entire flight. Sounds wonderful to me, and a night and day experience from what I'm used to. 

Despite the heat and humidity that Washington, DC has been dealing with while I was gone, our garden looks good. Only because Peter watered. 

Check out this beautiful Gerber daisy. Another favorite of mine. 

I love my petunias. Peter isn't a petunia fan, but he puts up with them. 

Peter's roses are bursting out all over! They truly brighten up our wall. 

In the midst of cleaning up our garden today, I ran into a neighbor. This neighbor is aware of Mattie's death. She asked me how I was doing and I basically said "the same." I have different answers depending upon my mood and who I am dealing with. She did not like the response.... the same, and instead started questioning it and trying to set me straight. She was pontificating about how special each day is and therefore each day can't be the same. In theory I knew what she meant, but she clearly did not know what I meant. But because she was pressing the issue, I just gave it to her. Though I am grateful for certain things and to have each day, others do need to know that there are times when parents who lost a child to cancer can't be happy. That aspects of this loss cloud every detail and essence of life. She changed her tune after I started to elaborate. Overall September is a challenging month. It signifies when children go back to school. Naturally, that doesn't apply to us anymore. September is also the month that Mattie died. Which is bad enough, but then to top it off, September is also national childhood cancer awareness month. It is just a lot to absorb, especially coming off of the summer (a time period that screams out family). 

Tuesday, August 30, 2016

Tuesday, August 30, 2016 -- Mattie died 363 weeks ago today. 

Tonight's picture was taken in August of 2005. Each August we took Mattie to Los Angeles to visit my parents. On this particular trip, we visited San Diego. This was Mattie at Legoland. Mattie was a HUGE Lego fan and therefore this theme park was built with him in mind. He had a great time there, from seeing Lego structures to all the fun rides. In fact, Mattie received his first driver's license from Legoland. It was something he was proud of!


Quote of the day: Fear makes us feel our humanity. ~ Benjamin Disraeli


Here is a photo of Mattie's driver's license that I mentioned above! This was something Mattie was very proud of! This license still hangs on Mattie's closet door today. 


I am back from Los Angeles. The flight was very good, I had no one in the middle seat next to me, and when I walked in the door, I got a big greeting from Indie!

Monday, August 29, 2016

Monday, August 29, 2016

Tonight's picture was taken in August of 2005. We took Mattie to another one of his favorite spots..... The George C. Page Museum, that features fossils of animals that were trapped in the La Brea Tar Pits. Pits which are still bubbling right outside the museum. Mattie was absolutely fascinated learning about how tar preserved animal bones and how these fossils are being studied today. The museum has a fabulous laboratory where you can watch scientists at work, and it truly captures the mind and imagination.


Quote of the day: When you have decided what you believe, what you feel must be done, have the courage to stand alone and be counted. ~ Eleanor Roosevelt

When my parent's tree is in bloom it looks a lot like this. Though I admit this is NOT a photo of their tree. But I did want to give you a feeling for how glorious a flowering pear is. It almost looks like snow in the spring!


My parents are working hard to figure out whether the tree can be saved or needs to be replaced. In the mean time the tree will be given vitamin B and the bark will be wrapped to prevent it from being exposed to the air, while it is healing. Hopefully in a few weeks they will know if the tree can truly be salvaged.



I guess I am in amazement that the neighbor throwing this teenage party on Saturday never came over to find out if we were okay, or to even assess the damages that this car caused. It is true they aren't responsible for the driver's accident, but I think I would have felt compelled to check on my neighbor if I knew the kid headed to my party did a great deal of damage to my neighbor's property. It tells me a lot about the neighbor and to me it is a sad commentary on people today! Also what if we weren't home when this kid drove into our tree???? No one from that party (two doors down from my parent's house) came to wait with the 17 year old driver responsible for the accident. They did not offer to help and basically ignored him as if he did not exist. The police officer assisting us said this behavior is very typical for teenagers especially if they deem they could be implicated in the accident. Can you imagine? Honestly I just wanted to sit down with this 17 year old driver and tell him..... these people aren't your friends! Friends are people who you can trust and who stand by your side not just in the fun times, but the challenging times. When people deny knowing you, it is time to face the music and realize you need new dance partners!

Later this afternoon, my mom and I went out for a walk! All I can say is OH MY! We were walking in direct sun, and it was over 100 degrees. After walking 2.8 miles, I literally gave out and was feeling ill. So we headed back, thankfully in the nick of time, before both of us suffering from heat exhaustion!



Tomorrow I head back to Washington, DC. So the next time you hear from me, I will be on the other coast!

Sunday, August 28, 2016

Sunday, August 28, 2016

Tonight's picture was taken in August of 2005. Mattie was visiting my parents in Los Angeles and experiencing floating in a swimming pool. Mattie was very cautious when it came to water, which was actually wonderful. Mattie was born with common sense. I never had to explain cleaning products to him (he seemed to know to avoid them because they were dangerous), and seemed to have an innate understanding for things that could potentially harm him. Though tentative about entering the water, Peter was persistent with Mattie, and tried to make the experience fun for him, which only further encouraged Mattie.


Quote of the day: Never let the fear of striking out get in your way. ~ Babe Ruth

We saw the play today entitled, Calendar Girls. It was a screenplay by Tim Firth and Juliette Towhidi based on a true story of a group of Yorkshire women who produced a nude calendar to raise money for Leukemia Research under the auspices of the Women's Institutes in April 1999. In the screen play and movie the premise for these women taking off their clothes was to raise money for research. Though I have issues with that notion alone, today's play was even more ridiculous. The premise for taking off clothes was to raise money NOT for research but to purchase a couch for the family lounge in the hospital (in memory of John Clarke, the husband of one of the women in the Women's Institute which is a community based organization for women). This to me made NO SENSE!!! After all how expensive is ONE couch? They couldn't think of any other way to raise this money than to take their clothes off?!!! That to me leads me with a lot of questions.

Putting the story line aside, which was hard for me, since I work hard to raise money for childhood cancer.... I couldn't get passed the sights I was seeing before my eyes. What you see in the promotional photograph is what you see on stage and one woman in particular in this play I swear is an exhibitionist and I believe likes living without clothes more than with them on.

 

I have to tell you this play was so poorly executed and half of the theatre was sleeping! At the intermission, we all decided we couldn't sit through another act of this nightmare and left. We never do such a thing, so that is how bad it was. Tonight was the closing night of this show and yet from our perspective it looked like opening night in which the cast was still learning their lines.

After this show, we went out for an early dinner at one of my favorite restaurants. One I have been going to since I lived in LA. In a way we needed an escape and a nice dinner today after yesterday's very scary car accident right in our front yard. We are still recovering from this!!!

Saturday, August 27, 2016

Saturday, August 27, 2016


Tonight's picture was taken in August of 2004. It is one of my favorite photos of Mattie that I took! We were visiting my parents in Los Angles and in typical Mattie fashion..... he decided to be a character! He found my sandals, put them on, and was parading around the house. Check out his smile, he was clearly proud of himself.










Quote of the day: Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen. ~ Anonymous

What have we been doing for the last several hours? The answer is we have been standing outside my parents house dealing with a major accident. A teenager was driving too fast, WHILE the sun was still up, and took the corner by my parent's home too fast. He lost control of the car, almost hit a kid, and came flying onto the front lawn. Thanks to the pear tree...... it stopped the car before hitting the house and potentially killing the driver.

I have never met my parents neighbors before, but I met ALL of them including the kids. One kid who is 8 years old, was fascinated by what was going on as well as interacting with the police. So this fellow was with us most of the evening. The police did an OUTSTANDING job and managed the incident beautifully. But who expects this to happen? The scary part is my mom and I were backing out of our driveway, when we heard a car speeding and skidding out of control. So my mom stopped the car. If she was further out of the driveway, this car would have hit definitely hit me and most likely would have seriously injured me. So it does put this all into perspective.

Today, we went out to lunch in Calabasas, which is about 45 minutes West of where my parents live. The outdoor mall that we went to, is like NO mall I know of. The area is filled with ducks, fountains, turtles, birds of all kinds, and is simply a wonderful escape.

While at lunch, we had these gals waddling over to greet us. They were looking for a hand out and many people obliged the ducks!

At the other end of the outdoor shopping complex is a beautiful fountain with bronze sculptures and turtles! A ton of turtles to be exact!

I truly believe Mattie would have enjoyed this sight today! He was into any sort of water element and of course turtles!

Is this not an adorable turtle fountain?

A frog fountain! Not sure which one I like more.... the turtle or the frog.

This is an overview of the entire fountain. Which looks very pond like, doesn't it? It has statues of kids... two are in the water, one is on land trying to pull in the row boat, and one little boy is in the row boat. It is the boy in the boat that always reminds me of Mattie.

I entitle this Turtle Beach! Don't you just love the turtle line up!

I actually had to research what this turtle is doing! My mom and I watched this big turtle climb on top of the other one. Bascially what I found out was that this turtle was competing for the best basking site and this is what turtles do both in captivity and in the wild.

This is the other end of the fountain! To me just coming to see the water, the turtles, and the ducks make it worth the drive!