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! 

Tuesday, August 8, 2017

Tuesday, August 8, 2017 -- Mattie died 412 weeks ago today.

Tonight's picture was taken in August of 2008. Mattie's art therapists were helping Mattie adjust to life in the clinic during his first month. Literally they pulled the ceiling tiles down and invited kids to paint on them. Then the tiles were placed on the ceiling for everyone to admire them. Mattie's art therapists traced a scene from Scooby Doo for Mattie to paint in. It was an OUTSTANDING activity for Mattie, Peter, and me. We were busy working on it for a few weeks. Mattie did FIVE ceiling tiles in total. When the clinic was recently remodeled we were able to reclaim three out of the five tiles. It saddens me that we did not get this Scooby Doo tile or Mattie's big roach tile. I have a feeling that the roach tile scared too many kids and parents and was tossed out! Recently Peter and I took photos of the tiles we have and we are in the process of framing the photos of the tiles and hanging them in Mattie's bedroom. We felt this would be a wonderful Mattie tribute. I don't think Mattie's art therapists knew at the time they were creating legacy items for us, but that is indeed what all of his Hospital art has become to us. 


Quote of the day: You don't get to choose if you get hurt in this world. But you do have some say in who hurts you. ~ John Green


I rarely go on Facebook. On occasion I will post something, and certainly during the Fall, Winter, and Spring when the Foundation is busy, I will post on the Foundation's page. But overall, I find Facebook aggravating, depressing and not a positive user experience. I much prefer face to face connections and conversation. For example, this morning I happened to go on Facebook because someone tagged me on a posting. While I checked out that posting, I went through my news feed. Ever SO BRIEFLY mind you. But I was on there LONG enough to get disgusted and hurt. One friend posted how she was celebrating her child's birthday. That of course is the reality of life... children have birthdays and I can't shy away from that. What troubled me was how she wrote about it. She said that she has heard that when a couple has an only child they are referred to as "a couple with a kid." However when a couple has a second child (or more), that is when people officially refer to them as "a family." I got the sentiment she was trying to convey, since it was her second child's birthday, but it was hard NOT to take that posting personally. Did I not have a family because I only had one child? Better yet what am I now? Now that this one child is dead, am I "a couple with NO kid?" I am being sarcastic, but at the time I was hurt and had to walk away from the computer. 

I am constantly left with the question.... why do people really like Facebook? I have heard that people who turn to Facebook tend to have lower self esteems, higher levels of depression and so forth. But after searching on the internet, I found a peer reviewed study that was published in 2017 about the effects of Facebook. I think it is worth exploring and reading. I posted Harvard Business Review's article about the study below. 

The study was published in the American Journal of Epidemiology and assessed three waves of data from 5,208 adults from a national longitudinal panel maintained by the Gallup organization, coupled with several different measures of Facebook usage, to see how well-being changed over time in association with Facebook use. The researchers' measures of well-being included life satisfaction, self-reported mental health, self-reported physical health, and body-mass index (BMI). The measures of Facebook use included liking others’ posts, creating one’s own posts, and clicking on links. 

Overall, the results of the study showed that, while real-world social networks were positively associated with overall well-being, the use of Facebook was negatively associated with overall well-being. These results were particularly strong for mental health; most measures of Facebook use in one year predicted a decrease in mental health in a later year. Researchers found consistently that both liking others’ content and clicking links significantly predicted a subsequent reduction in self-reported physical health, mental health, and life satisfaction.

Honestly, I did not need a study to tell me these things. It is how I feel every time I go on Facebook. Fortunately I am attuned to how it makes me feel and I have NO problem at all walking away, not caring in the least what I am missing or what the latest trend may be. Mark Zuckerberg is fortunate that his devotees are not comprised of people like me, because if they were like me, he wouldn't be worth billions today. 

A new, more rigorous study confirms: The more you use Facebook, the worse you feel:
https://hbr.org/2017/04/a-new-more-rigorous-study-confirms-the-more-you-use-facebook-the-worse-you-feel

Monday, August 7, 2017

Monday, August 7, 2017

Tonight's picture was taken in August of 2008. Mattie was in his first week or so of treatment. At that point Mattie did not know what he wanted to wear in the hospital. So he stuck with hospital clothes. As Mattie's treatment continued he opted to wear his pajamas. We literally had a ton of pajamas by that point for him to choose from and they had to be button up shirts, because once he had his surgery, he was unable to lift his arms over his head. 

In this photo, you see Mattie wearing a model magic mask he created. He did this in the hospital hallway because when we first entered the hospital an in-patient playroom did not exist. Nonetheless, we made the best of it in the hallway, thanks to the child life staff. To this day, I still have this mask on display in our kitchen. 



Quote of the day: That no one dies of migraine seems, to someone deep into an attack, an ambiguous blessing. ~ Joan Didion



I did not start the day with a headache, but after doing Foundation work today, I have developed a full blown migraine. Which means I am stepping away from the computer for the rest of the day. Until tomorrow. 

Sunday, August 6, 2017

Sunday, August 6, 2017

Tonight's picture was taken on August 9, 2008. Mattie was adjusting to being in the hospital and was receiving his first round of chemotherapy that week. Early on during Mattie's battle, friends came practically daily to visit him. I think taking any child to visit someone in the hospital is daunting and scary. But parents really rose to the occasion and wanted to be supportive and they wanted their children to understand what was happening (to a certain extent) to their classmate. Naturally as Mattie's condition got worse, his disabilities more severe, and his prognosis more grim, the visits stopped. Mattie truly did not want to interact with others from the outside world as he understood all too well how his life was changing. Right from the beginning Linda (Mattie's child life specialist) was there to help not only Mattie and me, but all his friends who came to visit him in the hospital. As you can see, Linda set up a painting party on the floor right outside Mattie's room. This helped his friends engage with him through an activity they were all familiar with, which helped his friends transition better into the hospital experience. 


Quote of the day: Once you have a clear idea of your priorities – that is your values, goals and high leverage activities, organize around them. ~ Stephen Covey

Last weekend we took on the project of organizing our front hallway closet. Today's challenge was the walk in closet in Mattie's bedroom. This is the largest closet in our home and it becomes a catch all closet. It is filled with my graduate school things, Mattie's things, and Foundation things. You would be amazed what I have packed into this closet. I have purged this closet numerous times already, but today my initial focus was the first three shelves. As you can see Sunny was sitting by Mattie's bedroom door watching the process. Peter helped me organize things from the closet into categories. Making it easier to find things in the closet. 

I am happy to report that six large garbage bags of items were removed from the closet. A majority of which will be donated and some things go directly into the garbage. I imagine the closet still looks like a mess to you, but my three shelves on the left hand side have a semblance of order now. 

There is a lot of truth to Covey's quote tonight. When I go through my closet and assess it now, I only keep things that match my priorities. Which for me means things focused on childhood cancer and the Foundation. So with this philosophy in mind it really made tossing things much easier. Nonetheless, there are many of Mattie's favorite toys in this closet, not to mention all of our Christmas decorations. Things Mattie LOVED. I have yet to deal with these items, and for the most part they usually get shuffled around the closet. I was in NO MOOD to address any of this today, but do feel good about what we did accomplish last weekend and this weekend.