Friday, August 18, 2017

Friday, August 18, 2017

Tonight's picture was taken in August of 2005. Mattie was in Los Angeles visiting my parents. We took Mattie to Griffith Park and he want on the pony rides. Mattie was timid about riding, but with Peter's support, he tried it and loved it. You can see Peter's arm behind Mattie. Peter literally walked along side Mattie and the pony! In fact, Mattie loved adventure, and fortunately he had Peter to help him experience such things as pony rides, rollercoasters, and other things. Unlike the both of them, I am risk adverse and cautious about jumping into most activities without more data.  


Quote of the day: Either you run the day, or the day runs you. ~ Jim Rohn

When we woke up this morning, we opened up the curtains of our room to this sight. Palm Springs has very beautiful terrain, with its incredible mountains, blue skies, and the palm trees dotting the desert scenes.  

Our session at the conference was at 3pm today, so in the morning, we strolled around downtown Palm Springs. Keep in mind that it was like 110 degrees outside! How we didn't melt on this walk is beyond me. We discovered that Palm Springs has a Walk of Starts. Which is in essence a walk of fame where "Golden Palm Stars," honoring various people who have lived in the greater Palm Springs area, are embedded in the sidewalk pavement. This Walk was created in 1992. 

My mom and I posed for a photo with Frank Sinatra's star. Peter and I are both Frank Sinatra fans and our wedding song, was made famous by Frank.... "The Way you look tonight."

During our downtown stroll, we came across a statue of Lucille Ball. This statue, was created in 1995. Ball served as Honorary Mayor of Rancho Mirage from 1958-1965 and again from 1971 until the city became incorporated in 1973. She joined three other stars who were honorary mayors of valley cities, including Bob Hope (Palm Springs), Frank Sinatra (Cathedral City), and Bing Crosby (Palm Desert). 

We held hands with Sonny Bono today. Bono was the mayor of Palm Springs, from 1988 to 1992, and congressman for California's 44th district from 1995 until his death in 1998. Of course most people know Sonny Bono because he was married to Cher. 

Literally as we were walking, we would jump into a store, just to get air conditioning. Yet because of the intense heat, you could barely feel the air! In any case, in this one store ALL the bug items caught our attention. If Mattie were alive, he would have definitely wanted a bug key chain or bracelet! Mattie loved seeing my reaction to bugs, and I think my negative reaction inspired him to LOVE the bugs even more. He got a chuckle out of my fear. 

We presented today for an hour. Given that it was at 3pm, I was surprised that around 200 people attended. The Association of Pediatric Hematology/Oncology Nurses (APHON) was the first professional organization to endorse the Standards. It was wonderful to see how many attendees were familiar with the Standards, wanted to learn more, and were eager to participate. The Association today also officially announced that Mattie Miracle will be offering three evidence based practice research grants to APHON members. Grants will be awarded to members who specifically want to address the implementation of the Standards. Mattie Miracle was created in 2009, and today was the first opportunity in with my parents were able to see us present officially at a professional conference. I think it was a very powerful and meaningful experience for them. 

We went to another wonderful restaurant tonight called Miro's. It is voted the best restaurant in Palm Springs. The beauty of Palm Springs is it has plenty of culture, but NOT a lot of people and congestion at this time of year. Of course being 110 degrees outside explains the lack of crowds, but I find it delightful!

Thursday, August 17, 2017

Thursday, August 17, 2017


Tonight's picture was taken in August of 2005. Mattie was visiting my parents in Los Angeles! As you can see my parents gave Mattie a Thomas the Train gift. In true Mattie fashion he loved the BOX as much as the gift. Mattie decided to put the box on his head and paraded around the kitchen in it! With Mattie the possibilities were endless. Just when you thought you figured him out, he would come up with something else that would make you pause.... think or laugh!








Quote of the day: Every truth passes through three stages before it is recognized. In the first, it is ridiculed. In the second, it is opposed. In the third, it is regarded as self evident. ~ Arthur Schopenhauer

Today we drove to Palm Springs. It is about a two hour drive East of Los Angeles. You know you are approaching Palm Springs when you see these great white giants! Wind turbines for as far as the eye can see!! The high-tech megatowers are engineered in cooperation with NASA and nursed by federal and state subsidies. This wind farm on the San Gorgonio Mountain Pass in the San Bernadino Mountains contains more than 4,000 separate windmills and provides enough electricity to power Palm Springs and the entire Coachella Valley.

It is truly a stark vision.... the beauty of the terrain against these mechanical structures. 

There is no secret that Palm Springs is a desert. You can't possibly think otherwise when you see these barren mountains and landscape. Things are very dry and when you step out of the car or hotel, it is like walking into an 110 degree oven!

When we got to the hotel, we checked in, picked up conference registration and also checked out the rooms we will be presenting in. This is tomorrow's room location. I am very impressed with how well organized and smooth the check in process to the conference was today. 

I have been to many conference centers in the course of my career, but this one is absolutely charming and picturesque!

This is the interior lobby space of the conference center! The sunlight with the backdrop of the mountains is incredible. 

Can you see the mountains from the lobby space?

Peter snapped a photo of my mom and me. 

Right outside the entrance to the conference center!

We ate dinner tonight at Spencer's Restaurant. It was a fantastic restaurant about five minutes by car from the hotel. They had this wonderful outdoor garden, but given the heat we ate inside. It is a balancing act between intense air conditioning and extreme heat outside. We are looking for the happy medium, and I am constantly taking my sweater on and off to accommodate for the temperature extremes!

Wednesday, August 16, 2017

Wednesday, August 16, 2017

Tonight's picture was taken in August of 2005. Mattie was three years old and visiting my parents home in Los Angeles. Mattie had a VERY cautious approach to water. But with some coaxing from Peter, he went into the pool in a little floating vehicle. I am not sure what Mattie found more interesting.... the water or the floating vehicle. Never the less, with constant exposure to the water, Mattie eventually got used to it and with some swimming lessons, was really made great headway in the water before cancer took over. 


Quote of the day: Courage is the first of human qualities because it is the quality which guarantees all others. ~ Winston Churchill

Peter and I flew to Los Angeles today. We took off in clouds and landed in clouds. This was the sight we saw over Washington, DC this morning. 

Mind you Peter returned from New Jersey at midnight, and we got up at 4am to catch our 7am flight. Needless to say, we are totally out of it this evening. 

This was the sight we saw over Texas. Almost looks like a rainbow in a way. 

The plane over New Mexico. It was an amazingly clear day across the Country and very smooth travel. Which makes flying much more pleasant. 

Arizona! 

Approaching Los Angeles

Beautiful foothills as we approach Los Angeles. 

Los Angeles on decent. You can see the clouds and smog. Tomorrow we drive with my parents to Palm Springs to attend the Association of Pediatric Hematology/Oncology Nurses (APHON) conference. We present on Friday and Saturday, but August is NOT the time to visit Palm Springs. Which is a desert. It is currently 110 degrees there, with baking heat! It should be an experience. 

I hear that one of Mattie's nurses is attending the conference. I can't wait to see who it is! That will be a surprise. 

Tuesday, August 15, 2017

Tuesday, August 15, 2017 -- Mattie died 413 weeks ago today.

Tonight's picture was taken in August of 2006. We took Mattie to Legoland with my parents in San Diego. Mattie was the KING of the Legos, so we had a feeling he would love a whole theme park geared to the building affectionato! As you can see, Mattie and I posed for a photo by this man made completely of Legos. If you look closely you will see that Mattie was holding a toy car in his hands. He got this car while touring San Diego, and loved it because it had a detachable surf board on top of it. That car went with us practically everywhere. I am so glad Mattie had several trips to Legoland and that we experienced so many adventures together.  



Quote of the day: The best things in life are nearest: Breath in your nostrils, light in your eyes, flowers at your feet, duties at your hand, the path of right just before you. Then do not grasp at the stars, but do life's plain, common work as it comes, certain that daily duties and daily bread are the sweetest things in life. ~ Robert Louis Stevenson

A while ago, I bought these socks in the Hallmark store. I bought Peter several socks like this, that say different things. Like "My Dog Loves Me" for example. But I wanted orange socks, and I liked the "I am brave" saying. Ironically though I never wore those socks until today. 

Why did I put them on? Well it really was by happenstance. I went through a lot of socks today because it was pouring and I walked Sunny several times in the rain. So at some point I grabbed for these orange socks because they were dry and wore them the whole day. 

Peter and I are flying to Los Angeles tomorrow, picking up my parents and then on Thursday drive to Palm Springs to attend and present at a national nursing conference. It is a full day of travel, but poor Peter had to go to New Jersey today on business. So for him, it will be a long couple of travel days! Prior to having Sunny and Indie, getting ready for a trip just meant the usual household chores and packing. But today was an absolute whirlwind of walking Sunny and then taking him for boarding. Sunny is boarded in Virginia and Indie goes to DC. Totally opposite geographical places. So it means a lot of driving for me. Sunny is a breeze to get into the car and transport to boarding. Of course once he steps foot in the facility, you see the separation anxiety he has over leaving me. Which is never a good feeling, as he practically has to be dragged away from me. 

To add insult to injury, I had to capture Indie and put her in her cat carrier. Which I did after dropping Sunny off at boarding. I can't handle them both at the same time. Because if I should box Indie in front of Sunny, he gets very upset and concerned about her. If you have never tried to catch a frisky cat and put it in a cat carrier, then it will be hard to relate to me angst. Indie relates better to Peter, whereas Sunny is really my boy! Therefore I am not as comfortable grabbing Indie and putting her in her box. But since Peter is in New Jersey, I had to outwit the cat. Before attempting this process, I happened to look down at my socks, and saw it said.... I am brave. Literally I laughed and figured this was a sign that I could do this. I assembled Indie's cat carrier last night and kept it out of her view. I waited until she looked relaxed today before approaching her, and then grabbed her and threw her in the carrier. She was wiggling like a worm on the way to the carrier, but I learned the hard way the last time, NOT to let go when in the capturing process. Once you let go of a cat, you have LOST. Because cats will hide, run, and do whatever it takes NOT to be captured again. 

So this evening, I am cat and dog free, and it is really an adjustment. They have a way of filling up our home. I can't make a move without Sunny following me from point A to point B. He is the typical Velcro dog (Velcro dogs show closeness behaviors while you're home. A study found that dogs that have hyper-attachment to their human are more likely to develop separation anxiety.), and I am sure his neediness could be problematic for the average owner. The funny part about Sunny, is this aspect of him reminds me of Mattie. Mattie was very connected to me and wanted to be engaged with me constantly. Which is why Sunny's behavior doesn't trouble me at all. I'm used to it and in fact it causes me to reflect and remember the significant connection I had with Mattie. Of course I don't need Sunny to do this, as I reflect on Mattie's life daily in this blog and in the work I do for the Foundation, but Mattie always wanted a dog. Therefore, I feel that Sunny is a Mattie wish come true!

Monday, August 14, 2017

Monday, August 14, 2017

Tonight's picture was taken in August of 2006. Every August we took Mattie to Los Angeles to visit my parents. One of the places Mattie loved to visit was Griffith Park. A beautiful park filled with all sorts of activities, many of which were right up Mattie's alley. Such as a train, like the one you see in this photo. I can't tell you how many times Mattie rode this train. The train took us around parts of the Park, and along the way, we saw displays featuring kid themed characters (Snow White and the 7 Dwarfs, etc) and even a barn filled with ponies. Mattie loved it and so did we. The irony is I went to high school in Southern California and yet NEVER visited Griffith Park. Neither did my parents. However, once Mattie came into the picture, we did all sorts of exploration and adventures with him. As Mattie preferred being outdoors!


Quote of the day: It is not the strongest of the species that survive, nor the most intelligent, but the one most responsive to change. ~ Charles Darwin

This adorable and fit lady is my new zumba instructor. Her name is Hilary. How did I find her? From my previous instructor who went back to work full-time. Last week I tried Hilary's class, but she had a sub teaching the class. The sub was great, but Hilary is fantastic. She has high energy and appeals to women of all ages. Which I admire. The class ranges from people in their 30's to their 80's. I think this is the beauty of zumba, as you can tailor the steps and moves to what you are comfortable and able to do. Also the point of the class is to have fun, move your body, and feel good/healthy. 

Last week I tried the class for free, so I was going to pay for today's class since I had my first class free already. However, when Hilary realized it was my first class with her actually teaching, she came out to greet me personally, and told the receptionist not to charge me for today's class. She is an absolutely lovely person and clearly attracts lovely people to her class.

My previous zumba class was special to me. It was taught by a fellow mom at Mattie's school, and the women in the class became part of my social network. Which was important to me because after losing Mattie, I really had to re-invent myself and my friendships. Since I lost many friends from childhood cancer. When my previous instructor decided to stop teaching zumba and return back to full time work, I was truly saddened. To me it was a loss. A loss of exercise, friendship, and belonging to something. I had been going to that class for years. So for two years now, I have been zumba free. It was only recently that I decided to move out of my comfort zone and try something new. Or as Darwin points out in tonight's quote.... I was responsive to change. Social situations are no longer normal for me. But since my former zumba instructor located Hilary's class for me, I decided to take a chance and try it. 

Before class started today, one of my classmates came up to me and introduced herself. She has been attending Hilary's class for three years and considers herself a regular. Janet then introduced me to other women in the class and I could see that Hilary has created quite a loyal community, not unlike the community I experienced in my last class. Not every teacher has the skills to create such a safe and welcoming environment. Hilary also has a Facebook page, which I had been reading through before attending class today. I am sure many students don't care what a teacher's life, feelings, and beliefs are.... but to me it all matters. Hilary is a mom of two boys and I notice she raises money for brain cancer. I am sure I will learn more as time evolves, but I guess the moral of tonight's blog is sometimes being open to change provides opportunities and new experiences that are actually important to one's quality of life. 

Sunday, August 13, 2017

Sunday, August 13, 2017

Tonight's picture was taken in August of 2006 in San Diego, CA. We always took Mattie every August out to California to visit my parents. My parents introduced Mattie to San Diego, specifically here Balboa Park. Balboa Park has something for everyone. Mattie loved their train museum, the zoo, and even this lovely pond with the water lilies. You can't see as closely as I can into Mattie's lap. But he was holding something black and white! It was a toy version of Shamu the whale from Sea World. Mattie always loved his San Diego adventures, and he never left a place without a little memento in his hands. 


Quote of the day: Look at our farmers markets today, bursting with heritage breeds and heirloom varieties, foods that were once abundant when we were an agricultural nation, but that we have lost touch with. Bringing all these back helps us connect to our roots, our communities and helps us feed America the proper way. ~ Jose Andres

This wonderfully cute photo of Sunny was taken by his groomer, Mandy. She just sent it to me today. We entitled it, "our All American Pup!" Mandy happens to love Sunny, but what is not to love? She feels he is very easy going and a pleasure to be around. But she also says he has really become more accustomed to getting groomed now. For the most part, Sunny doesn't like water, the sound of it, and forget about getting up on the grooming table. All things Sunny practically refused to do at first. But I take Sunny monthly for a grooming, because like a collie, he has a ton of fur, and sheds incredibly. So he needs daily maintenance, which I do. But it helps to start with a clean dog that has a good grooming! I am so happy to hear that Sunny is getting acclaimed to the process. 

Peter, Sunny, and I walked to Dupont Circle to visit the Farmer's Market. It is about a one mile walk each way. I hate to say this, since I have lived in this city for 23 years, but I have never gone to this Farmer's Market before today. It is hard to believe, given that it is every Sunday, THROUGHOUT the year. Even in the winter. 

One our walk to Dupont Circle, I admired this person's zinnias! 

This is what the market looks like. Unfortunately we learned that dogs are NOT allowed inside, despite the fact that there is no mention of this on-line. Any case, Peter stayed with Sunny on the grass and I strolled from tent to tent. Within each tent are local farmers selling their products. It is an incredible experience, as they sell all sorts of fruits, vegetables, flowers, baked goods, pasta, meats, and soaps. 

Get the picture! Tomatoes like I have never seen in any grocery store. Including Whole Foods. Everything smelled fresh and enticing, and all the people working in the tents are super friendly and proud of their products! 

There was a salad/green for just about everyone! I have never seen greens displayed like this but it made you want to buy lettuce. Unlike the sad excuse for lettuce that is in the grocery stores. 

Everything is displayed so beautifully. I struck up a conversation with people in every tent! There was a live musician playing for little kids as well, and my one thing I took notice of was that there was NO place to eat food on-site. They sold it, but there were just no tables and chairs.  

Glorious flowers! Besides vegetables, I bought one fresh cherry scone and two blueberry popovers. We brought them home and ate them outside on our deck. That was one of the most relaxing portions of our weekend. Sitting still and not working, doesn't come naturally to me. So this was a great retreat, that took us walking through the city, supporting local farms, and eating special treats. 

This afternoon, I took Sunny out for another walk. We have a neighbor who insists on feeding the squirrels. She has done it for practically as long as I lived here. She has a thing for squirrels. I on the other hand do not like squirrels because to me they are the day-time rat. In any case, "our squirrel lady" had passed by this tree right before us and distributed peanuts everywhere. Of course that meant that the squirrels were out and about eating. Sunny is fixated on squirrels and will hunt and chase them down. If I did not pull back on him, he would most definitely catch and kill one! 

Naturally the Squirrel Lady and I don't particularly like each other. I respect that she wants to feed these creatures, but she is very bothered that Sunny would want to catch a squirrel! She has argued with me on occasion, because she doesn't want Sunny to scare the squirrels away from our property. Needless to say, I snapped this photo because Sunny was transfixed at this squirrel on the tree, just hanging there and eating a peanut. Frankly I think this was one brazen squirrel and if I let Sunny go, it would have been a dead one at that. 

Saturday, August 12, 2017

Saturday, August 12, 2017

Tonight's picture was taken on August 7, 2008. Recently I showed on the blog a photo of Mattie working with Linda (his child life specialist) on a painting in the middle of the PICU hallway. Linda lined the floor with paper and Mattie and his buddies got to create whatever they wanted. This was the finished product. Can you guess what part of this creation Mattie worked on? If you guessed the SUN you would be correct. From the time that Mattie could draw, he always included a sun in all of his works. Which maybe one of the reasons, I consider it a Mattie symbol, and it became the symbol of the Foundation. Of course in Mattie's painting, the sun has MANY rays shining out from it. Whereas the Foundation logo's sun has ONLY seven beams! Why? Because each beam/ray symbolizes one of the years Mattie was alive. Since Mattie died at age seven, I wanted this integrated within our logo. 


Quote of the day: Memories are like a garden. Regularly tend the pleasant blossoms and remove the invasive weeds. ~ Linda Fifer Ralphs

I spent some time in our garden today. Cleaning up weeds, dead plants, and planting a couple of new things to replace the things that died out. Keeping this garden going throughout our intense heat and humidity isn't easy. Especially when we go away. Thankfully I have found a reliable fellow in our complex who takes care of our green fellows when we are not around. 

I snapped all these photos from Mattie's bedroom window. Which is now where my desk is located. I have a lovely corner desk by the window and can look outside at all times of the year. I think Mattie loved this space, as I can vividly remember him standing on his bed and looking out the window! 

Our garden is filled with butterfly and sun signs and symbols. I will have to take some specific photos of these lovely items to share on the blog. 

If you look closely, in the middle of the plants is one of Mattie's fountains. You can probably see the splashing spray of the water. In July of 2008, right before Mattie was diagnosed with cancer, he wanted to surprise me for my birthday by making handmade fountains with Peter. Peter and Mattie worked on two fountains for weeks. I knew they were doing something outside, but I had no idea what they were actually doing. When they weren't working on the fountains, they covered them and told me not to look until they were finished. Which I honored. 

Mattie's fountains are still running even today. They are dormant from October until Mother's Day. On Mother's Day, Peter always cleans them out and starts them for another warm weather season. Of course, we can't look or hear them without thinking of Mattie and the sentiment behind why they were created. 

Friday, August 11, 2017

Friday, August 11, 2017

Tonight's picture was taken on September 24, 2008. This was Mattie's second month of chemotherapy, but it was before his first surgery. So he still could run, play, and function quite well. That day, Mattie's preschool invited him back to the school to play with a friend on their playground. Mind you by this time, Mattie would have technically been in first grade. But we had a very close tie to Mattie's preschool. As you can see, Mattie was on the slide and his friend, Alex, was running underneath. Mattie had two wonderful years at this preschool and on this playground. It was there Mattie made some of his closest friendships, as did I. Many of our Foundation loyal and dedicated volunteers are moms I met during our preschool days. This playground playdate was a bright moment during a very tumultuous time. Several of Mattie's teachers and the preschool's director were on the playground with us, and we sat and chatted while the boys played. 



Quote of the day: For me, I am driven by two main philosophies: know more today about the world than I knew yesterday and lessen the suffering of others. You'd be surprised how far that gets you. ~ Neil deGrasse Tyson

In January of this year, Peter and I visited this hospital. It is the Clinical Center at NIH, or otherwise known as Building 10. Why were we there? Because our lead researcher of the psychosocial standards works in this building and invited us to do a lunch time presentation on the Standards for clinical staff. I have to admit it was an impressive structure and you could tell that you are surrounded by the best and brightest.... devoted to either finding treatments for cancer, or meeting patients and families psychosocial needs. 

I really did not give much thought to what actually took place in this huge structure when I visited it, but then I turned on the Discovery Channel last night and found out they were televising a three part series called, First in Human. I have to admit at first, I did not get the title. But then as the show explained that a first-in-human study is a clinical trial where a medical procedure, previously developed and assessed through in vitro or animal testing, or through mathematical modelling is tested on human subjects for the first time. 

First in Human highlights some of the clinical trials occurring in Building 10. It features the scientists, researchers, clinicians and FOUR patients/families over the course of three, two hour episodes. I found this first episode absolutely fascinating. Not only because such cutting edge science is occurring in this brick structure, but I think what stopped me in my tracks was the courage and bravery of the patients who are willing to enroll in such a clinical trial. A trial where scientists truly do not know the impact, effectiveness, or side effects that will occur when a drug is given to a human. So you maybe asking yourself.... why would a patient ever sign up for something so risky? Well the answer is simple...... standard treatment has failed them, and this is in essence their last resort. Their choice is either definitely die or potentially thrive with experimental treatment. Experimental treatments like this provide hope. 

Here is a little more about Building 10.... it is the largest hospital in the United States that is completely devoted to clinical research and it opened in 1953. At the current time, there are over 1,600 different clinical research studies in progress. Patients volunteer to take part in research and, so far, the hospital has seen over 500,000 patients. Some of the pioneering work at this center include curing solid cancerous tumors, treating heart attacks with nitroglycerin, and the identification of genetic components in schizophrenia. Other important areas of research at NIH include creating blood tests to identify both hepatitis and Acquired Immune Deficiency Syndrome (AIDS).

This documentary is vivid, real, and the subject matter isn't little. But it is well done and worth watching. It airs on three sequential Thursday evenings on August 10, 17, and 24, at 9:00 p.m. ET/PT on the Discovery Channel. They are following four patients, who I listed below. One of whom I know has lost his battle to Leukemia. I know there is little comfort that the death of this young man has for his parents and wife, but without a doubt Bo died not only trying to save himself, but also trying to provide data on his disease that would help patients in the future. I would say that Bo, patients like him, and their families are true unsung heroes. 

Bo: Acute Lymphobastic Leukemia (died)
Deidra: Sickle Cell Anemia (disease free now)
Lucy: Job Syndrome (in treatment)
Anita: Melanoma 


A trailer about the series:

https://www.nih.gov/health-information/first-human


Depending upon your TV provider, you maybe able to see the First Episode by clicking on this link:

https://www.discovery.com/tv-shows/first-in-human/full-episodes/admission

Thursday, August 10, 2017

Thursday, August 10, 2017

Tonight's picture was taken on October 1, 2008. We were visiting Memorial Sloan Kettering to consult with a surgeon about Mattie's cancer. I will NEVER EVER forget this day. This surgeon had us waiting for two hours to see him. Then when he did grace us with his presence, we were told he could only spend FIVE minutes with us, because he had a reception across town to attend! If that wasn't bad enough, he entered the examine room, and stared at us for at least one minute. Without saying anything!!! When words finally came out, he was painting a grime picture of Mattie's prognosis.... RIGHT in front of Mattie. I literally stopped him from speaking and told him I was going to take Mattie back to the waiting room to sit with my parents and my lifetime friend Karen. After which he told Peter and I he wouldn't recommend surgery, but instead move to palliative and end of life care. You can imagine what I think of this surgeon. Mind you he is renowned and people come from all over the world to see him at this institution. For the life of me, I have NO IDEA WHY!


Quote of the day: I cannot say whether things will get better if we change; what I can say is they must change if they are to get better. ~ Georg C. Lichtenberg

On Monday evening, I literally took to bed quite ill with a migraine. I couldn't look at anything, hear anything, and forget smelling or thinking about food. Peter came upstairs to give me gingerale and with that, look who joined me.... both Sunny and Indie! 

It somewhat reminds me of my times with "nurse Patches." Which is the name I gave to our calico cat. The only difference was Patches freely came and was intuitive to what was going on with me, while Sunny and Indie needed direction from Peter.

I literally plan Sunny into my days. Days that I have a lot to accomplish, I have to make sure I figure out his walk schedule. This afternoon, I came back from grocery shopping and headed upstairs to the bathroom. You can see that Sunny parked himself right outside my door. Why? Because he is herding me to go outside! Literally I can walk up and down the stairs multiple times until I am ready to go outside for a walk. You would think Sunny would then just wait for me by the front door! But no!!! Sunny instead follows me up and down the stairs, until I am herded right out the door! 

Wednesday, August 9, 2017

Wednesday, August 9, 2017

In September of 2008, Peter, Mattie, my parents, and I drove up to NYC. Our goal was to meet a physician who specializes in osteosarcoma at Memorial Sloan Kettering. This doctor was offering an experimental immunotherapy treatment for children with osteo, and we wanted Mattie to be included and receive this drug. I will never forget our visits to Memorial Sloan Kettering, mainly because the two doctors we consulted with there told us Mattie was going to die, and they wouldn't even recommend treatment. Lovely no? It is true in the end Mattie did die, but thanks to the treatment he received in Washington, DC, Mattie was with us 14 additional months. Time which we wouldn't have gotten if we followed their advice. In the midst of meeting doctors in New York, we also took Mattie to some fun places, like the FAO Schwarz famous toy store. As you may be able to tell, Mattie wasn't himself and was giving us a far off in space look for the camera. 


Quote of the day: Sometimes in life confusion tends to arise and only dialogue of dance seems to make sense. ~ Shah Asad Rizvi


I remember in February of 2010, Peter and I went on a cruise to the Caribbean with my parents. To be honest, Mattie had only been gone for five months, so I did not know if I was coming or going. After Mattie died, I went no where, and did not want to travel. But when my parents booked this cruise for all of us, we went. While aboard the ship, I was introduced to Zumba. My mom had already been doing Zumba in Los Angeles, but for me this was all new territory. I liked it so much on the ship that when I got back to Washington, DC I wanted to find a class. But in all reality I was very fragile, so it had to be the right class. It turned out that the room mom, Jenny, in Mattie's kindergarten class taught Zumba close to Mattie's school. Given that I knew the instructor and she understood what I just went through and survived, I felt more at ease trying something new. 

For several years, I went to Jenny's class. It wasn't just a class, but it also became one of my social circles. Which was important because when you lose an only child to cancer, you can't imagine how you quickly lose friends and people in your life. For various reasons, such as the sheer logistics of not being involved in kid activities anymore and therefore not coming in contact on a regular basis with friends, or even the fact that friends can't handle seeing you! You remind them of their greatest fear..... the death of a child! 

In any case, Jenny's class served multiple needs..... exercise, getting out of the house, establishing a routine in my calendar, and meeting new people. For years, I enjoyed every aspect of Jenny's class, and if she was still teaching it, I would still be going. But about two years ago, she stopped teaching the class. I remember the last day of class, a few of us were very upset. We knew Jenny, and Jenny knew us. She knew aspects about our lives, what song and routine was favored by which student, and even ran several Zumba sessions at the Mattie Miracle walks in previous years. 

On occasion, myself and another classmate meet up with Jenny for lunch. At our last lunch together, I complained that I could not find a morning Zumba class anywhere. Most of them are offered in the evenings, and by 6pm, I am in no mood to start commuting through traffic to attend Zumba. A few weeks ago, Jenny sent me and my Zumba friend an email alerting us to a morning Zumba class. I was thrilled and also skeptical that I would like it. But today, my friend and I went to the class to try it out. Unfortunately there was a substitute teacher today! I say that is unfortunate, because we really liked the sub. So I have to find another day to go back and try the permanent teacher. Nonetheless, after not doing Zumba for two years, it was lovely to pick right back up. It is a wonderful workout and I need this cardio exercise to deal with fibromyalgia. Walking with Sunny is good, but it isn't enough. 

Sunny's morning routine was altered today, since he knows after I get dressed, we usually go for a walk. That did not happen and I could tell Sunny was perplexed! He is a boy all about routine. So changing things up is good for him and for me. Don't worry he walked five miles today with me despite the schedule change!