Saturday, October 1, 2016

Saturday, October 1, 2016

Tonight's picture was taken in October of 2003. Mattie was a year and a half old and until I saw this photo, I almost forgot Mattie's great love for pulling out all the VHS tapes and DVDs out from the TV cabinet. Mattie enjoyed playing with their boxes, and slacking and sorting them. As you can see, Mattie was multi-tasking. He was watching a video but also his hands and mind were very busy. RARELY, unless Mattie was sick, did I see him motionless and focused only on one activity. 





Quote of the day: A great wind is blowing, and that gives you either imagination or a headache. ~ Catherine the Great

Peter and I feel exhausted today. I am not sure if it is all the traveling around in one day or the rainy and depressing weather. However, weather doesn't typically affect Peter.

This was the sight in our bedroom this morning. We have to close our bedroom door at night, otherwise both Sunny and Indie would be jumping over both of us throughout the night. However, when we wake up in the morning and open the bedroom door, Sunny jumps right on the bed. I think the rain got to Sunny today because he wanted to rest this morning too!

Sunny looking at Peter, as they both get ready for a walk in the rain. 

Do you get the picture?! Sunny desperately wanted to go out and was looking at Peter as if to say...... "Are you ready yet?! I'm waiting so patiently!!!"

Friday, September 30, 2016

Friday, September 30, 2016

Tonight's picture was taken in September of 2003. Mattie was a year and a half old and began fully walking at 16 months. So by this point in time, Mattie occasionally held onto things around our home to walk. Mattie loved our wrought iron plant stand. He would put things on the shelves and also play with them there. It is somewhat ironic I think that this plant stand still sits in our living room. However, it no longer holds plants. It is our memory stand filled with Mattie items. It contains lego structures, angels, a lot of Mattie's pottery creations, shells, and an Indiana Jone's hat Mattie received from a friend (and liked a lot!). 


Quote of the day: No person was ever honored for what he received. Honor has been the reward for what he gave. ~ Calvin Coolidge

For the past two days, we have been in Indianapolis, IN at the 40th annual Association of Pediatric Hematology/Oncology Nurses (APHON) Conference. APHON invited us to the conference, gave us an award, and paid our way to attend. Which was very generous of the Association. APHON was the FIRST professional organization to endorse the national Psychosocial Standards of Care for Children with Cancer and their Families. 

APHON has around 3,600 members, of which 800 attended the conference. APHON's colors are purple and orange, which is why you see the room glowing in purple. Purple represents purpose and orange represents healing.

 A photo of Peter before the awards luncheon. 

Peter and I were pictured with Jami Gattuso (APHON's past president) and Kathy Kelly (Nurse Scientist, Department of Nursing Research and Quality Outcomes at Children's National Medical Center and Mattie Miracle Core Psychosocial Team Member of the Standards Project)

We were given this plaque for our outstanding loyalty and dedication to the psychosocial issues and concerns of nurses, childhood cancer patients, and their families!

In front of the exhibit hall. The Indianapolis convention center is HUGE! Actually enormous is probably a better word. It feels like you could walk miles in there and they are able to host multiple conferences at one time!

These are the thunder heads we flew home in. In a matter of two days, I have been on four flights. I am happy to be back on solid ground. We could have taken a direct flight to Indianapolis, but that would have meant being on a small plane. Thank goodness that wasn't the option Peter selected because I would have felt every bump in a small plane. It took us longer, but I felt safer. 

It looks prettier now than when I saw it in the sky. 

Clouds everywhere! Meanwhile when we arrived home, our friend Heidi picked us up at the airport with Sunny in the car. Sunny seemed stunned to see us. As soon as we got him home, he was thrilled to see us. Wanted about 45 minutes of petting, and then ate two bowls of food for me. Apparently Sunny was refusing food while we were away, and this boy LIKES to eat. So I imagine he missed us! I say this because Sunny seems like a fellow that can adapt to any situation and caregiver. So part of me wondered if it would bother him if we went away. After all, we have only owned him a month. However, Sunny's behavior answered that question for me!!!

Thursday, September 29, 2016

Thursday, September 29, 2016

Tonight's picture was taken in September of 2003. I will never forget computer time with Mattie. Peter snapped a photo of us..... Mattie sitting on my lap and navigating the computer together. This was not an unusual occurrence. We played many child friendly games on-line through the PBS and Noggin websites. Mattie loved it and some of the links led to songs! I will never forget the theme song to the show... Jay Jay the Jet Plane. Mattie loved when I sang it and bounced along to the tune. Here is what it sounded like..............  https://www.youtube.com/watch?v=nrP3_LenwUQ


Quote of the day: It is better to deserve honors and not have them than to have them and not deserve them. ~ Mark Twain

Today Peter and I flew out of Reagan National Airport in DC to Indianapolis for a conference. As soon as we walked through security at Reagan, I could hear live music. It was disorienting at first, because you aren't expecting a band in the middle of the airport! But as I was observing what was going on, I quickly deduced an honor flight was coming in. I am not sure I would have known what that was, but my friend Heidi was telling me about these flights earlier in the week. She also mentioned that you can volunteer with Honor Flight! It is worth looking into because it was a very patriotic and amazing experience. 

If the music doesn't get you, then perhaps watching fellow passengers STOPPING from from their daily routine of rushing around to pick up a flag and wave it will!!! It captures your attention immediately, but then when you see 80 or more veterans coming off an American Airlines Honor Flight, it is awesome. Some World War II veterans are in their 90's, so many come off in wheelchairs, others with canes, and some are walking. Each veteran is assigned a volunteer companion throughout the flight and journey. When the veterans disembark the plane and are greeted by music and a cheering crowd, it visually gets them. It gets all of us observing too, and there are a lot of tears shed. Many in the crowd shake hands, offer hugs, or kiss these veterans, and the veterans are beyond humble, but so appreciative to be acknowledged in this way! 

Honor Flight Network is a non-profit organization created solely to honor America’s veterans for all their sacrifices. They transport our heroes to Washington, D.C. to visit and reflect at their memorials. Top priority is given to the senior veterans – World War II survivors, along with those other veterans who may be terminally ill.

Of all of the wars in recent memory, it was World War II that truly threatened our very existence as a nation—and as a culturally diverse, free society. According to the Department of Veterans Affairs, an estimated 640 WWII veterans die each day. Here are some interesting statistics:

over 20,000 veterans have flown an Honor Flight in 2015

over 19,000 guardians have flown an Honor Flight in 2015

there are 130 Honor Flight Hubs (in 42 states)

For more information about Honor Flights.........

https://www.honorflight.org/

The gate door is decorated for the veterans' arrival. There are civilians and military to greet the flight!

The man with the yellow jacket is a veteran and the man behind him is a guardian volunteer assigned to assist him on the flight and throughout the day at the memorials. Picture this with 80+ veterans. 

Another veteran. You can see people shaking his hand. Notice we were all given these cute American flags to hold and wave!

The main volunteer preparing us before the veterans disembarked the plane was wearing this great shirt!!! It says.....We can't all be heroes. Some of us get to stand on the curb and clap as they go by. ~ Will Rogers

The band greeting the veterans was OUTSTANDING and put all of us in a very patriotic mood. 

It is wonderful that American Airlines does this. In fact the pilot who flew the veterans was then a passenger on our flight. He was truly a compassionate man. Was even helping passengers on our flight to their seats!

This is the main atrium area at the Charlotte airport! Is it not beautiful? There are wooden rocking chairs in this atrium and a live piano player. I think DC could learn a few things!!!

Charlotte was our stop over and then we landed at our destination, Indianapolis. The airport is HUGE. I have come to the conclusion, the wide open space makes people happier and friendlier. People seem less stressed and certainly more helpful in Indiana. Literally there were greeters at baggage claim. Adorable older adults, who can't wait to help you. I absolutely loved it.

This large building is our Westin were we are staying. It is right next to the convention center, on the left!

The green space outside our hotel! With flowers and fountains. I visited Indianapolis about 15 years ago, before Mattie was born. I attended a conference here, and I liked it back then. Now it has grown significantly and appears very vibrant. 

The beautiful State House! 

Wednesday, September 28, 2016

Wednesday, September 28, 2016

Tonight's picture was taken in September of 2003. Mattie was about a year and a half old. Why did I take this photo? Because I always found Mattie fascinating. If the TV was on, it was stimulating enough for Mattie. I only let Mattie watch one or two different stations that were geared toward children like PBS and Noggin. However, the funny part was Mattie wasn't into TV. He was the ultimate multi-tasker! He could play with something, be walking around, and yet would still be processing what was going on in the background. What was absolutely hysterical though, was when the Sesame Street character Elmo came on TV. Wherever and whatever Mattie was doing he would STOP in his tracks! He loved Elmo and Elmo got Mattie's undivided attention! 

Quote of the day: No duty is more urgent than that of returning thanks. ~ St. Ambrose

Today would have been my maternal grandmother's 109th birthday! Rather hard to believe, given it seems like she did not die that long ago. But in all reality, she died in 1994, at the age of 86. 

My grandmother lived in my parent's home with them after her husband died from cancer. So when I was born, my grandmother was already living with my parents and therefore to me growing up in a multi-generational household was normal. But also appreciated, as I learned early on that there is a lot to be learned from older adults.  This photo was taken perhaps when I was a senior in high school. We were living in Los Angeles at the time (after relocating to Los Angeles when a sophomore in high school), but would come back to New York frequently to visit family. In this photo from left to right are: my mom, my cousin Clara, me, and my grandmother. The photo doesn't do my grandmother's eyes justice, because she had very beautiful eyes. The ironic thing is only recently have I noticed that my mom has the same shape eye as her mom! Funny how some things are wasted on children, but you pay more attention to things as you become an adult. 

The Foundation newsletter went out today and unlike in July, all the hyper links worked beautifully! Peter solved that technical problem, which I am happy about, because the newsletter is very streamlined now and NOT cumbersome to interface with. I can see who opens up our newsletter and what is opened, clicked through and read. This month, we had a large percentage of readers clicking on links to get more information from our Foundation website! I am absolutely thrilled because this was the whole point of CHANGE. I don't care for change much, but Peter has been making a very convincing case for why it was needed. So I finally learned the technology!

As of this Friday, we will have Sunny with us for a month! He has become an integral part of our lives! However, tonight and for the next two nights, Sunny will be staying with my friend Heidi while we are at a conference. Sunny is a good sport. He went into Heidi's home without a problem, was happy to interact with Heidi's dog and they all went for a walk after I settled Sunny in. Sunny loves to walk, so that was a great activity to ease him into this change. 

Tuesday, September 27, 2016

Tuesday, September 27, 2016 -- Mattie died 367 weeks ago today.

Tonight's picture was taken in September of 2003. Mattie was a year and a half and loved all things RED, not to mention anything with a wheel. Mattie showed me early on that some things are hard wired into children. Mattie had a natural tendency to gravitate to cars, trucks, buses, trains, and planes. He was fascinated by wheels and motion. Peter introduced Mattie to this firetruck ride-on vehicle that Peter's parents gave him. I am not sure what Mattie loved more..... the horn, the bell, actually washing the truck with a hose, or riding on it! 



Quote of the day: Listen long enough and the person will generally come up with an adequate solution. ~ Mary Kay Ash

We have had Sunny for over three weeks now. He is the perfect dog in so many ways, except his sleeping habits. Actually we can put him and Indie in the same category. They are both nocturnal. We have been trying to break our cat of the habit of howling at night and pouncing all over us and the bed for months. Not just once, but throughout the night. Frankly this reminds me of Patches, our calico. Patches was also very vocal and nocturnal. Which is why both cats needed to be confined to another bedroom at night. Eventually Patches broke that pattern and we could let her freely roam our home at night. But it took years for this success. Breaking a dog of this pattern, seems more complicated, especially a dog like Sunny. Sunny is very driven by being in our presence. He is very human focused.

Sunny wakes up EVERY morning anywhere from 3 to 5am. NOT my hour!!! The link below to the article entitled, "The real reason your pup is waking you up at night," discusses many explanations for why dogs wake up mid-night. Sometimes they are sick, have to go to the bathroom, or are hungry. However, if this happens consistently like with us, then the article suggests that it is boredom. The author says the dog needs more stimulation and physical exercise. I walk Sunny 4-7 miles every day. In two or three mile increments at a time. I think Sunny needs a lot of mental stimulation too, which is why going down to the National Mall and hunting and chasing squirrels is very good for him. But clearly we need to break this pattern because both Peter and I are feeling like zombies. Similar to how we felt when Mattie was a newborn! I have tried locking Sunny out of our bedroom twice over the weekend, and it worked. So I am afraid this is the alternative we have to follow until he get used to the fact that 3, 4, or 5 am wake ups aren't tolerated. 

Basically Sunny currently goes to bed in our bedroom on his dog bed. Which is at the foot of our bed. He has NO problem retiring to his bed and falling asleep. He just won't stay asleep! I plan on moving his bed downstairs tonight and see what happens.

Meanwhile this afternoon, I had to escape and I took myself out to lunch at our local Garden Cafe. I knew about this Cafe when I was a graduate student. A professor of mine introduced me to the cafe! It is one of my favorite places because it is small, but the food is so fresh and wonderful. The day started out cool, but by the afternoon it was in the 70's and very lovely to sit outside, watch people, and regroup. 


The real reason your pup is waking you up at night:
http://www.sheknows.com/pets-and-animals/articles/1092411/why-does-my-dog-wake-me-up-at-night

Monday, September 26, 2016

Monday, September 26, 2016

Tonight's picture was taken in October of 2004. Mattie was two and a half years old and this was his first Halloween out trick or treating. Mattie was a bit intimidated by the noises and kids running around, but he did take it all in. We went trick or treating in a DC neighborhood, in which the local fire fighters came out to greet kids and kids were allowed to check out the fire truck. A Mattie favorite!



Quote of the day: Tell me and I forget, teach me and I may remember, involve me and I learn. ~ Benjamin Franklin


This quote is so perfect for me today! The Foundation changed its newsletter format starting in July. However, despite testing and double testing it before it went out to 1,800 supporters, there were problems with all my web links. I was so upset by this especially since the links worked in my preview mode. Thanks to Peter..... he worked out this bug with the technology folks at Contact Contact (our on line newsletter company). However, as the writer of the monthly newsletter, I need to understand how to use the technology. Peter has tried to tell me about the technology, and he has even taught me many times how to use it. But today we worked on the newsletter together, and I finally got how to update our Foundation's website and how to integrate these updates into our newsletter. So hopefully the September newsletter will be going out this week and all the links will be working! 

My friend Heidi came to visit us today. We got together to celebrate her birthday. Check out Sunny's greeting of her! Heidi will be taking care of Sunny this week when we head to Indiana to attend a conference. Heidi has a dog named Fenway, and it is my hope Sunny enjoys this companionship! 

Sunday, September 25, 2016

Sunday, September 25, 2016

Tonight's picture was taken in October of 2004. To welcome in the Fall, we took Mattie to several Fall festivals around our region. Practically one every weekend. The particular festival pictured here was in Leesburg, VA, and what I loved about it was that they had a petting zoo for kids. As you can see Mattie was very curious about this sheep! Animals, especially large ones, can be intimidating to children. Mattie was cautious, loved observing them, and really wanted to get to know these animals. 



Quote of the day: Tired, tired with nothing, tired with everything, tired with the world’s weight he had never chosen to bear.   ~ F. Scott Fitzgerald



For the past several weeks, I have been very busy with Sunny. He keeps me up, outside, and walking. However, this past Friday, I had a caucus to attend and luncheon. Which meant that I had to sit for several hours in air conditioning and then stand for the luncheon.... in more air conditioning. This is problematic for me. Many of the intense pains I had been experiencing for months prior to getting Sunny had begun to subside thanks to my walking routine and moving away from constantly sitting at a desk. I am not sure how one day away from this routine could impact how I feel, but it has! I am back to feeling achy all over, unable to find a comfortable position, and as such it affects my ability to concentrate and focus on anything. 

That is just the physical result of Friday, but of course there is a psychological component to Friday as well. It is hard at times for me to see that only the biomedical components of care are discussed and these issues SOLELY get the ears of legislators. In addition to that frustration, I find that each year we attend the caucus the message is always the same. There is an update on the medicine, with a discussion of the hope for a medical break through and the elusive CURE. A word I can't stand, because once cancer is a part of your life, it isn't going away. There is always the threat of recurrence, not to mention secondary side effects and psychosocial concerns. Part of the issues that the medicine faces is that  there isn't just one type of childhood cancer, there are hundreds and because the biology of childhood cancer isn't well understood, two children could have the same type of cancer, but respond differently to treatment. It makes for finding better treatments elusive if not impossible. After all, we have made very little progress from year to year. Keep in mind the FDA approved ZERO new drugs for childhood cancer this year, and only three new drugs in the last twenty years. Drugs that aren't targeted to all forms of childhood cancer either!

So why don't people advocate for strategies and services that can help in the here and now? I HAVE NO IDEA. It makes sense to discuss psychosocial care and invest in this care because it is this support that helps sustain the medicine and enhances the quality of life of children with cancer and their families. Psychosocial care isn't only needed during treatment, it is needed post treatment in survivorship, it is needed if there is a recurrence, and it is certainly needed at end of life and bereavement care. My running joke is that I will always have a job, because my job is to change a societal mindset and that kind of change moves at GLACIER speed. 

This coming week, Peter and I have been invited to Indiana to receive an award at a National nursing conference. We are very honored to be the proud recipient of this award from the Association of Pediatric Hematology/Oncology Nursing, an organization that was our first professional endorser of the psychosocial standards of care. It is very generous of them to finance our travel and hotel stay as part of this award package and we look forward to meeting the Association leaders and thanking them in person for their support of the historical psychosocial standards of care!