Saturday, April 13, 2019

Saturday, April 13, 2019

Tonight's composition was sent to me today by my Facebook friend Tim. Peter and I have never met Tim. He lives in Arizona. Yet he uses his digital talents to capture photos of children who have died from cancer. He than freely shares his creations with parents and friends on Facebook. As I tell Tim all the time, he helps us keep Mattie's memory alive for us and even introduces Mattie to people who never met him. The photo in the center of this composition was taken at Clyde's. Which was Mattie's favorite restaurants. We went out to lunch that day with my parents, and my mom captured the two of us together.  


Quote of the day: You have not lived today until you have done something for someone who can never repay you. ~ John Bunyan

Peter helped me today! We finished sorting all the toiletries that were delivered to us by mail. It is truly incredible the generosity of people, people who do not even know us. 

Certainly I advertise our item drive to friends and in our Foundation's newsletter. But I also do postings about the item drive on Facebook. This year after one Facebook posting, we got 25 boxes in the mail from people who bought items off of our Amazon wish list. 

Even Sunny got into the act. I love staging all the items in front of Mattie's photo, because these gifts were collected in honor of Mattie's birthday. 

Mattie's birthday serves as a wonderful occasion to collect gifts, gifts that will help countless other families in the hospital who are supporting a child with cancer. Another reason I stage these gifts together, is it helps people visualize the extent of the donations we received! 

Later in the afternoon, we went to Lowe's and started buying plants for our garden. Just purchasing them and bringing them upstairs was enough for us today. Tomorrow I start planting!

Friday, April 12, 2019

Friday, April 12, 2019

Tonight's picture was taken in April of 2004. We took Mattie to Roosevelt Island that weekend and in typical Mattie fashion he found something to collect. In this case it was two dandelions. Mattie also loved to sit on Peter's shoulders. It gave him a great view and I can't count how many hours or miles Peter logged  this way. But it was MANY!!!










Quote of the day: There is no one alive who is Youer than You. ~ Dr. Seuss

Today is my dad's birthday. Believe it or not, my parents have been out of their home since the end of January, when a part of their house flooded. Due to the intense California rains. It is NOW April, almost three months later and they are still living at a hotel. Well you know when you live anywhere for a period of time, you start to get to know the people. Not unlike our time in the hospital when Mattie was treated for cancer, the nurses and staff became our family. So in essence the hotel has become a second family for my parents. Tony, the man pictured here, had a special birthday cake made for my dad. He surprised my parents with it today and I am so happy this moment was captured on camera. 

Though Mattie was a child, he liked the fact that he shared a birth month with his "pop pop." Mattie would have approved of the cake and I am happy that my dad could be celebrated as these are the challenges I face living across the country from my parents. 

I had a marathon licensure board meeting today. Try a 6.5 hour long meeting. Sunny wasn't happy with me one bit. The funny part about all of this, is apparently I have a reputation for being a "firecracker." A good firecracker though, because I just do not go off without purpose. Having served in this role for many years, I know my content, and apparently the combination of knowledge and my personality makes me memorable. Or so I am told. Any case, this just made me chuckle hearing this!


This evening, we walked to dinner. As we walked through the George Washington University campus, I snapped many lovely photos. Photos that document that spring is finally here!

 Absolutely love the tulips!

How about these redbud trees. They are electric in color! Until I moved to Washington, DC, I never heard of a redbud tree before.  

Happy pansies!

Have you ever seen purple tulips before?

Thursday, April 11, 2019

Thursday, April 11, 2019

Tonight's picture was taken in April of 2005. We took Mattie to the US Arboretum that weekend. We did this almost every April. As I loved how the azaleas seemed to be timed with Mattie's birthday. It was my joke with Mattie, as I said the azaleas were celebrating his birthday, which is why they always bloomed in April. 

Quote of the day: Generosity is not in giving me that which I need more than you do, but it is in giving me that which you need more than I do. ~ Kahlil Gibran

Look at this face! This is our Indie. Peter picked up Indie today from boarding and I picked up Sunny. Apparently the veterinary clinic LOVED Indie and made her cat of the week! They even posted this on Facebook. I download their photo collage of our Ms. Indie! Stunning, no? Indie is happy to be home and has settled right back in! 

Meanwhile, Sunny has come home a bit agitated and anxious. He goes on hunger strikes when we go away. He really puts our boarding facility through their paces. But they really try giving him all sorts of foods to inspire him to eat. Mind you I send him to boarding with a container filled with ground beef and another of ground turkey. Sunny knows the facility has other things too, like cooked chicken, rice, and pumpkin. So don't you know he holds out until he gets all these goodies! That's my Sunny. 

After I picked up Sunny, we went for a two mile Walk and then he came home and got lots of treats. 



It was a full day of chores and work, despite going to bed at 3:30am! I still can't get over the harrowing airplane experience we had yesterday. It was significant enough that American Airlines gave every passenger 5,000 bonus reward miles in our emails today! I am truly happy to be on the ground and to me the real hero is the pilot, who knew how to land this plane safely, despite its mechanical issues. 

I did not get the opportunity to post some photos from Phoenix. On Tuesday night, we went to the conference's opening party. They had a mariachi band playing, featuring a local high school group. They were amazing! In this photo from left to right are:
Lori (who works at NIH and we have been working closely with her for 7 years now), Nancy (a social worker from NY, and is good friends with my friend Peggy), me, and Peter.

Rarely do we get photos of just us! Nancy snapped this of us right before we presented on Wednesday morning. 

Peter caught me in action. We were the morning's conference plenary. Which meant that we had 200 conference attendees in the grand ballroom listening to us for two hours. Of that portion, I spoke for twenty minutes, as did Peter.  

Our panel we presented with. From left to right are:
Peter, Lori, Wendy (an amazing social worker from Canada, who we just formally invited to be a part of our Core research team. Wendy has been working with us since 2013), me, and Spencer (a social worked based in Kentucky).


When we left the hotel yesterday, we felt very positive. So many conference attendees stopped us in the hallway to thank us for presenting and specifically for the vision to create Psychosocial Standards of Care. The beauty of the Standards is it allows hospital administrators to really see and evaluate what a psychosocial professionals do, their versatility, and importance. So many people tell us how the Standards help them justify their jobs and in fact, result in getting more new hires at their institutions. In any case, hearing this unsolicited feedback made us feel like what we have and continue to do is of importance and is slowly making a difference. 

Wednesday, April 10, 2019

Wednesday, April 10, 2019

Tonight's picture was taken in April of 2006. Mattie was at his fourth birthday party. The first party we held outside of our home. We hosted a party for several of Mattie's preschool friends at the Riverbend Nature Center. Mattie had a great day walking on a nature trail, getting to meet some reptiles and bugs with a naturalist, and also doing a pretend archaeological dig in a sandbox. Certainly no party would be complete without a pinata. The party theme that year was dinosaurs, so you see that carried over into the pinata. 




Quote of the day: The whole world can become the enemy when you lose what you love. ~ Kristina McMorris

It is 2:30am and I consider myself lucky to be alive tonight and back home. It literally took Peter and I almost 12 hours to get home today from Phoenix. I will highlight our conference experience tomorrow. Because unfortunately our airplane trip home supersedes all my other experiences today. 

Our flight was supposed to leave Phoenix at 12:40pm. However, there was no plane at our gate and therefore we understood there was going to be a delay. About an hour later, we board the plane and take off. Peter snapped some wonderful photos along the day. You can see just how densely packed Phoenix is from the sky. 

Any case, as we were taking off, it became very bumpy.  I took note of this but then other things started to happen. Such as I felt like we were gliding rather than moving with jet power. Also in my opinion it felt like we were moving in slow motion, and I assessed we were not climbing in altitude as one would typical do on ascent. However, I chalked it up to my anxieties, since we literally were dealing with this for over twenty minutes and the pilot said nothing. However, he then came on the PA system and told us there was a problem. 

The pilot said that a high speed warning light kept going off. He further explained that we had to return back around and land in Phoenix. He told us we were safe and that we would make a normal landing. Nothing about this flight felt normal and literally this big Airbus was felt like it was flapping and floating in the wind. This 45 minute ordeal made me so nauseous I had to take anti-nausea meds to function. It was very scary.

When we safely landed, the pilot said in his 25 years of flying Airbuses, he has NEVER seen or experienced such a warning. 

So what was the warning? The pilot explained it once we were on the ground. The computer system on the plane felt that the wing flaps (used to slow down the plane, especially during landings) were out. Meaning that we should be de-accelerating. However, every time he tried to increase speed, as one definitely needs to do at take off, the warning light would go off preventing him for reaching the speeds he needed. Though the flaps were technically working, the computer did not register it that way, and apparently the computer has a great deal of say in terms of how the plane can function. Which is a rather scary notion. 

I was thrilled to get on the ground safely. But we did not know what was going to happen next. While on the ground and in the plane, a maintenance team came aboard and quickly assessed that the plane had to be placed out of service as the issue was too serious to resolve today. 

So we deplaned with the information that another plane was going to be ready for use several gates down. 

So over 200 people de-board the plane and migrate to the next gate. However, within twenty minutes, we learn that this won't be our gate, but we need to walk to a second gate. The communication was poor as was the whole overall operational process. 

So we board the second flight in hopes that everything will be okay. 

However, pilots can only be working a 9-14 hour shift. They can't exceed this! So despite passengers trying to get on the plane quickly and stow luggage, our pilots "timed out." They were literally pulled from service and all the passengers sat aboard the plane with the flight attendants, not knowing what was going to happen next. Of course the next concern was that all the cabin crew were also going to time out and we would be grounded overnight in Phoenix. 

We waited about an hour or longer for a new pilot and co-pilot to show up. But what surprised me were two things..... 1) no one clapped for the wonderful job the first pilot did to land our plane, and 2) I was disappointed in American Airlines lack of graciousness. Passengers were anxious (as some left the planes and refused to fly this flight), thirsty, and hungry. Yet the airline provided nothing during this wait. I get the fact that the flight attendants did not know the status of the flight, and therefore did not want to start any sort of service. But there was no good will gesture. 

Anycase, it is 3am and after what I would call a harrowing day, I am taking to bed. 

Tuesday, April 9, 2019

Tuesday, April 9, 2019 -- Mattie died 498 weeks ago today.

Tonight's picture was taken in April of 2005. We were celebrating Mattie's third birthday. He wanted a Blues Clues party, and I planned a fun scavenger hunt for the kids as well as arranged for a university student to come and do a magic show and introduce the kids to his sidekick, Hobbs (the bunny). Mattie had a great time and loved petting and getting to know Hobbs. So happy we snapped this photo before our guests arrived and the party began. 






Quote of the day: There is no greater sorrow than to recall happiness in times of misery. ~ Dante

We are very lucky to have access to this lounge on our hotel floor. It is open for about 12 hours a day and serves breakfast, snacks, and provides coffee, tea, water, and juices. It is a nice way to start a very early morning. As we got up at 5am today, in order to be downstairs by 6:30pm or so to set up for our 20 person focus group meeting. 

These beaded belts are the art work that line our hotel hallway. In fact, when we arrived in our room, there was a post card on the bed introducing us to the Director of Hotel Operations. She provided her email and phone number, to contact her with hotel issues. I literally wrote to her yesterday, and she got back to me this morning and couldn't have been more professional and pleasant. She resolved all my issues. Unlike the nightmare we experienced at our hotel stay in Atlanta. 

This cowgirl pose greets us each day in the elevator. 

My lifetime friend, Karen, told me about the "here comes the sun" lounge in the hotel. She does great research. I passed this spot several times already, but never paid attention to it, until she mentioned it to me. Funny, I need someone from NY to get me to stop and find something right in front of me. But I literally chalk up my distraction and agitation to my recovery. I was dealing with kidney stone pain for so long, it wiped me out. Now, when I don't have that pain, I am struck with a migraine. A migraine I have had for days now. Migraine meds aren't working and I know early morning rising isn't helping how I am feeling. 

Right outside our hotel window is a huge skyscraper. Mattie loved them! The building is huge and looks like a mirror. What I find intriguing is the reflections in the building, almost make the buildings look like cactus. 

I am strangely fascinated by all the unique chandeliers at the hotel. 

Many of the chandeliers are made out of colored glass!

Between sessions today, we ate at the hotel restaurant. Can you see the big wall of windows? Well it isn't a wall, but instead a garage door. They had them open today and fresh air circulated the lobby. Keep in mind it was over 90's outside and humid. 

Tonight, we are going to a restaurant called Quiessence. I read about it in DC before coming here. It is farm to table food, and literally sits on a farm. I am hoping it is a better experience than last night's disaster. We went to Tarbell's last night. It gets rave reviews and is family owned. I thought the food and service were awful. 



It has been a non-stop day today, starting with our focus group. In which Peter and I typed notes while people were talking. It was very mentally challenging, because we had a lot of content to cover in a short period of time. After the focus group, Peter and I worked for about 90 minutes to process these notes, clean them up, and send them out to our research team. Following that, we met with the team about our two hour presentation tomorrow morning. Then after that we went to a session entitled, "I can't go back into that room. Strategies to help multidisciplinary team members with difficult patients and families." This session was an hour and 15 minutes long. The social workers did a good job and provided strategies to really help clinicians work through challenging situations, but remember Peter and I were the only ones in the room who are parents. So we have a different lens then the professionals, because we LIVED this. 

Monday, April 8, 2019

Monday, April 8, 2019

Tonight's picture was taken in April of 2003. It was during Mattie's first birthday party. This was a very overwhelming day for Mattie, as he did not get all the commotion, noise, and the people in our home. In fact, there were several meltdowns in which Mattie and I went upstairs to regroup. But Peter carried Mattie outside on our deck for cake, and Mattie was interested in his Elmo cake and sampling it. I remember taking this photo of my boys and I think it is absolutely adorable! 


Quote of the day: We understand death only after it has placed its hands on someone we love. ~ Anne L. de Stael


As I joked with Peter..... we are on the road again today. On Saturday we drove from Charleston back to DC. That was over 560 miles. Just to turn it around today and fly to Phoenix, Arizona. Which is close to a 5 hour flight. Needless to say, I got a lot done on the plane in preparation for tomorrow's focus group on the Standards and our 2 hour presentation on Wednesday morning. 

The Psychosocial Standards of Care were published in December of 2015. It produced an evidence based historic document that reviewed close to 1,300 studies. Basically we funded the most comprehensive pediatric psychosocial standards of care ever. However, this document is huge and too cumbersome for clinicians to actually use and implement. Which is why, the authors of the Standards have been working to create a checklist to outline the Standards and help treatment sites take their temperature (if you will), on how their site is implementing all 15 standards. The research team also created a companion set of Guidelines for each Standard, which will help treatment sites improve on the delivery of each Standard of Care. In any case, prior to the conference 20 social workers from around the Country had the opportunity to review the Matrix and Guidelines and tomorrow will provide us feedback. Obviously we want to create tools that clinicians can easily use and that they will find helpful so that psychosocial care can be optimally delivered to patients and families.  



Before I boarded the plane today, I checked in on my boy. Who will be in boarding for two weeks. Sunny is putting them through their paces as he is going on a hunger strike. I get daily updates about his LACK of eating, along with what Dogtopia is doing to encourage him to eat. They are just wonderful and they continually try to mix it up for him, so that this will peak his interest. I don't know if you can see Sunny, he is the tan and white dog closest to the cages. What is Sunny looking at? He has a direct shot at the door out of the room. 

Peter sat next to the window and snapped photos along the flight. This being a fly over of Kansas.

Moving onto New Mexico. How do you like these peaks with snow?

Finally landing in Phoenix. From the sky, Phoenix can look densely packed like Los Angeles, but as you get closer you see this is real desert. Including cactus and instead of grass and plantings, you see more rocks and dirt. 

The Phoenix basin or valley. Again this reminds me of Los Angeles, with the mountains in the far distance. 

This is the conference we are attending. When we arrived to the hotel today, our room wasn't ready. So we sat in the lobby, but we weren't alone for long. We met up with another advocacy group that is here and then had a pre-focus group meeting with our researchers/ clinicians. So it has been a full day, and tomorrow's focus group starts at 7am!

Sunday, April 7, 2019

Sunday, April 7, 2019

Tonight's picture was taken in April of 2009. Mattie had two birthday parties that year. His official 7th birthday was at the hospital and then several weeks later, Mattie had a second party at his friend, Campbell's home. As you can see the theme was a "roach." Mattie claimed to like roaches, I think mainly because I couldn't stand them and he found my reaction funny. My friend Christine, had this roach cake Mattie for Mattie and her husband, James, even dressed up as a roach. It was a fun day, which even included a Reptiles Alive show.  


Quote of the day: Unable are the loved to die. For love is immortality. ~ Emily Dickinson

While we were away, more toiletry items came in for our 8th annual item drive. This drive is in honor of Mattie's 17th birthday. Fortunately I have been opening and sorting items over the last month, which makes it easier, than doing it all at once. All of these items will go toward stocking our Snack and Item Cart, located at MedStar Georgetown University Hospital and Children's Hospital at Sinai.  

It has been a day of catch up. Just to repack today for our trip tomorrow to Phoenix. A whirlwind trip.... as we fly there tomorrow, have a meeting on Tuesday, a conference presentation on Wednesday,  and then we fly home on Wednesday right after we present. 

In honor of our South Carolina trip, I wanted to share three more photos on the blog. Every evening at around 5pm, we were able to look outside our window and see deer. 

This was a sunset on the beach. 

This was a sunrise, on the day we were leaving. It is hard to believe that there are such different places in the US to live. There is something magical about Kiawah Island. It maybe that it is not a city, it is less dense and has lots of natural beauty.