Saturday, January 2, 2016

Saturday, January 2, 2016

Tonight's picture was taken in December of 2003. Mattie was visiting Los Angeles and he LOVED being outside and picking fruit off my parent's trees. It wasn't only the picking part that intrigued him but the sorting and stacking of the different types of fruits! You can just see the joy on Mattie's face! 


Quote of the day: For last year's words belong to last year's language 
And next year's words await another voice. ~  T.S. Eliot

After three days at sea, we landed in Antigua today! It was very nice to see land and walk on solid ground for a few hours. This is the view of Antigua as we pulled into port. 

Antigua is formed by volcanoes and it is the largest of the Leeward Islands. It is 108 square miles, 14 miles long and 11 miles wide. Its population is around 100,000. 

Antigua is known to have 365 beaches, one for each day of the year. Its main industries are tourism and agriculture. In 1632, the British colonized the island and Sir Christopher Codrington's arrival in 1684 heralded the development of its large-scale sugar cultivation. In the 18th century, the British Royal Navy chose Antigua as its base (ultimately to protect the sugar manufactured on the island), making a deep and lasting mark on the island's maritime development. 

This outcrop of land, that looks like a finger headed into the water is where Eric Clapton has an enormous house and compound on Antigua. 

In addition, not far from his home is Crossroads, a drug rehabilitation center that Clapton financed on Antigua. This is what Clapton says about the facility:

"As a recovering addict and alcoholic, many people over the years spoke with me about the problems associated with drug and alcohol abuse on the island. Subsequently, around 1993, I began to speak with more and more people about the possibility of founding a Centre on the island for the treatment of drug and alcohol addiction. There was certainly a need, and so the dream and the vision were born.

My vision was to create a Centre of the highest caliber to treat people of the Caribbean and throughout the world. The Centre would be staffed with experienced and internationally recognized professionals. The cost of treatment would be held to the lowest possible level, ensuring affordability and accessibility. And most importantly, this non-profit Centre would provide treatment scholarships for people of the Caribbean region and around the world."

Shirley Heights, which is where we were standing to take this photo, was originally built as a signal station to alert troops of approaching ships. 

At Dow's Hill we saw an interpretative video that traces Antiguan heritage and the grounds contain the remains of a 1780's house, gun platform, and observation area overlooking what is in this photo (Nelson's Dockyard National Park). 

Glorious bougainvillea at Dow's Hill. 

My mom and I at Nelson's Dockyard. When Admiral Horatio Nelson sailed into Antigua in 1784, he had little reason to believe that the port would develop into one of the Great Britain's most important military bases in the Caribbean, but it did. This 19th century dockyard that once served as the headquarters of the British naval fleet of the Leeward Islands has been converted into a museum and national park. 

Peter posed in front of the Royal Princess (left) and P&O Cruises' Azura (right). The Royal Princess is 1,083 feet long, with 19 floors! It feels like a sky scrapper and walking from one end of the ship to the other is exercise! 

Friday, January 1, 2016

Friday, January 1, 2016



Tonight's picture was taken in December of 2003. Mattie was a year and a half old and he spent that Christmas in Los Angeles. As you can see Mattie was very engaged with opening presents and particularly analyzing the Christmas wrappings. When they say that it is the simple things that attract and intrigue children, they aren't kidding. I learned that first hand with Mattie. He preferred boxes, pots and pans, and the everyday things around our home to entertain and engage him. 






Quote of the day: Hope..... Smiles from the threshold of the year to come, Whispering 'it will be happier'...  ~ Alfred Lord Tennyson

Last night was a formal evening on the ship. For the most part, people really do get dressed up for the occasion. I was wondering where the 3,700 passengers are on the ship, well last night we found a majority of them. People were in the New Year's Eve celebration spirit, with hats, noise makers, and so forth. I on the other hand am no longer thrilled about parties, large crowds or noise. So when I see these things, I typically head in the other direction.  

We did have a lovely dinner last night in the Allegro dining room, and the wonderful part is our waiters. Particularly our head waiter, whose name is Joselito, who is from the Philippines. He looks out for all four of us and can't do enough to please us. I would like to take him home. 

I have great admiration and appreciation for the crew on the ship. The crew is like the united nations, they come from countries all over the world and work hard to help support their families. Most of us would look at their work hours and say... how do you physically do this? Their jobs are demanding, they get few breaks and their work contract is nine months at a time, working 7 days a week! Yet they not only do their jobs, but they do them so well, with a smile, and they look like they have the energy of ten people each. Just remarkable. 

I took a photo of the piazza on the ship last night around 11:15pm. People were waiting for the balloons to drop. Underneath the balloons people were dancing and frankly between the loud noise and the crowds it reminded me of a fraternity party. 

Today we stayed busy on the ship. Though it was a day at sea, there was non-stop activities to participate in. We did find the walking deck on the ship. It is on the upper most deck of the ship. But as the captain mentioned it felt like a 40 MPH wind across the decks of the ship. He wasn't kidding. Peoples' hats and items were flying and it was absolutely difficult to walk in a straight line. 

Peter took a photo of us and I entitle it the ....... Wind blown Look!

Tomorrow is our first port day in Antigua. It is an adjustment to be at sea for almost three days now, so I know being on land tomorrow will be lovely. 

Thursday, December 31, 2015

Thursday, December 31, 2015


Tonight's picture was taken in December of 2002. We had a snow fall and I opened up our front door for Mattie to check it out. Mattie was sitting in "tot wheels," his favorite vehicle and mode of transportation! Mattie could zip around our entire first floor in this thing, and I honestly do not know how he managed tight corners and spaces. But he did it! Mattie wheeled himself right over to the door to check out the snow! 








Quote of the day: Our hearts grow tender with childhood memories and love of kindred, and we are better throughout the year for having, in spirit, become a child again at Christmas-time. ~ Laura Ingalls Wilder

Today was our first full day on the cruise abroad the Royal Princess. It is amazing to us that there are almost 4,000 passengers aboard this ship, and yet things don't seem crowded. Perhaps it is because the ship is so large. However, just walking from one thing to another on the ship (without purposefully exercising), I walked four miles today. Which should give you a feeling for the size of the ship! One of the features on this ship is the "Sea Walk." It is on deck 17 and this walkway literally juts out over the ocean. It has a glass floor so you can see down into the water. 

This is what the walk way actually looks like. 

We were busy today with activities from line dancing, zumba, bingo, and walking. Yet what amazes me is you really can't sit outside and enjoy the weather. Meanwhile inside the ship is like a freezer, with air conditioning! The way that the decks are arranged, once the ship is moving, air passes over it and the outdoor decks are like WIND TUNNELS. I mean wiping wind, not just a light and inconvenient breeze. It was Peter who warned me as he invested deck chairs today and when he came back into our room to share his observations, he said.... NO WAY! I did go check it out the decks myself, but naturally if Peter (who can tolerate all sorts of weather) is telling me no way, he means it. We never sat outside today!

In 2013, the ship was christened by Her Royal Highness The Duchess of Cambridge..... Catherine Middleton (who is married to Prince William). In the main lobby area of the Royal Princess, they feature this tribute area to Cate, with her photo and fresh flowers. 

There is also a museum style display in the lobby which has the top of the champagne bottle that she used to christen the ship, the scissors used to cut the rope holding the champagne bottle, and a replica of the dress she wore for the occasion. 

This is a first for me. Princess cruises now has quotes inside each of their elevators. As my faithful readers know, I love quotes. So I snapped this photo today on us in the elevator. Not easy to do, given the volume of people using the elevators. Typically they are SO full, I can't even see the floor, much less photograph it. 

This is the piazza or main town area of the ship. It is actually quite lovely, spacious, and full of gold coloring, which of course reminds me of childhood cancer awareness. The crew was getting the piazza ready for New Year's eve, and as you can see there were a ton of balloons overhead that will be dropped at midnight.

It is hard to believe that we will be celebrating our 7th New Year's without Mattie in our lives. We continue forward somehow, but we will never move on.

Wednesday, December 30, 2015

Wednesday, December 30, 2015

Tonight's picture was taken in December of 2002. Though Mattie was only 8 months old, he desperately wanted to walk. Well actually run. He wanted to skip the rolling over and crawling phase. Mattie HATED being on his tummy, and avoided it at all costs. What I loved about this onesie was the adorable reindeer on the back!


Quote of the day: Christmas, my child, is love in action. Every time we love, every time we give, it's Christmas. ~ Dale Evans Rogers

Today we boarded the Royal Princess ship in Port Everglades, Florida. This is the largest cruise ship we have been on with 3,700 passengers and 1,500 crew members. One thing you notice right away when taking a cruise is how incredibly talented, hard working, and efficient the crew is. 

Leaving Ft. Lauderdale has to be one of my favorite sail aways. As we sail out of the harbor, we pass incredible homes by the water. This modern number caught my attention. 

Why did I photograph this condo? Because as the ship departs, people are standing on the balconies. Not only are they waving, but when the ship sounds its horn, people on the balconies respond with cow bells, air horns, and cheers. It is truly funny and fun. What caught our attention is the ship's horn played the Love Boat theme song. That was a first, we never heard that before. 

This beach is near the condo above, which we passed along our sail away. 

This is the last sight of land you see before getting out into open water. It is our official "Goodbye" to Florida!

Tuesday, December 29, 2015

Tuesday, December 29, 2015 -- Mattie died 328 weeks ago today. 

Tonight's picture was taken in December of 2002. Mattie was 8 months old, and I can still remember sitting Mattie in front of the tree! If I remember it correctly, Peter snapped the photo, but Mattie was looking up at me. This was Peter's joke all the time.... he felt that Mattie always knew where I was and was focused on me.


Quote of the day: I am not alone at all, I thought. I was never alone at all. And that, of course, is the message of Christmas. We are never alone. Not when the night is darkest, the wind coldest, the world seemingly most indifferent. ~ Taylor Caldwell


On September 8th, Brady Dennis, a reporter for The Washington Post interviewed Peter to seek his opinion with regard to using pain medications like Oxycotin for children. The article was entitled, Why the FDA approved Oxycotin for kids as young as 11. Once Peter made the connection with Brady, he then shared with Brady the work we have been funding to develop psychosocial standards of care. Brady suggested that Peter and I meet with him for an interview. Brady did a two hour long interview with us, which was followed by another interview in our home. When we were interviewed at home, there was a Post photographer, Bill O'Leary, who came along. The irony is Bill came to our home in 2010, when the Post did an article on us. Bill remembered our home, but was impressed with how we transformed it post-Mattie's death. When he saw our home in 2010, it looked like a warehouse filled with all of Mattie's hospital items and gifts he accumulated in his year of treatment. 

The Psychosocial Standards of Care were published on December 23, and now six days later, a Washington Post article was published to announce this historic moment! The article is below:
How one couples loss led to a push for psychosocial care for kids with cancer

https://www.washingtonpost.com/national/health-science/how-one-couples-loss-led-to-a-push-for-psychological-care-for-kids-with-cancer/2015/12/29/45f0eb86-977e-11e5-b499-76cbec161973_story.html?hpid=hp_hp-more-top-stories_cancerkids617pm%3Ahomepage%2Fstory

Peter and I flew to Ft. Lauderdale today. At first we weren't sure we were even going to make it out of DC. We were on the plane, sitting on the runway, when all of a sudden the pilot came on the PA system to tell us that we had to go back to the gate because of an indicator light error. We were at the gate for 90 minutes, with crew fixing parts and other issues with the plane. We had very anxious passengers aboard who wanted to get off the plane. However the ticketing agent came aboard to let us know that we could leave the plane, but that another flight to Southern Florida wouldn't happen for at least another 24 hours, given the holiday season traffic. 

We flew in clouds until we got to Florida. This is the site we saw flying over Cape Canaveral. The circular area closest to the water is where the space shuttle used to launch from. 

Flying into Ft Lauderdale! A warm 80+ degrees today. 

Here was our glorious site at dinner.

Monday, December 28, 2015

Monday, December 28, 2015

Tonight's picture was taken in December of 2008. Mattie was in the hospital right before Christmas. His room, his wheelchair and even his feet were decked out for the season. We literally had Christmas lights all over the room, a magnetic Santa attached to Mattie's chair, and of course with the Christmas stockings Mattie received from friends, he decided to wear them! However, if you look closely you will notice that Mattie was holding a frosted donut. Mattie went through a donut phase during treatment and though he rarely ate the whole thing, we tried to bring him whatever he desired to eat since he rarely was hungry and tolerated food. 


Quote of the day: Ever since the Christmas of '53, I have felt that the yuletide is a special hell for those families who have suffered any loss or who must admit to any imperfection; the so-called spirit of giving can be as greedy as receiving--Christmas is our time to be aware of what we lack, of who's not home. ~  John Irving


I found John Irving's quote tonight and as soon as I read it, it resonated with me. So many people know that I am not a Christmas fan but I am not sure they understand why I feel the way that I do. Irving's quote captures exactly how I feel, especially when he stated that..... "Christmas is our time to be aware of what we lack, of who's not home." That says it all! 

Though I have been home two days, I feel very disoriented. I just finished laundry and unpacking and now I am packing for a completely different trip. Peter and I are flying to Florida tomorrow to meet up with my parents and to go on a cruise. Some people travel well, I am not one of those people. I find traveling very exhausting, especially during the holidays when I am surrounded by families. The next time you hear from me, I will be in Florida. 

Sunday, December 27, 2015

Sunday, December 27, 2015

Tonight's picture was taken in December of 2008. Mattie was in the clinic getting his experimental immunotherapy treatment. Within an hour of an infusion, Mattie usually became ill with a fever and so exhausted that he couldn't keep his head up. That day, Santa and Mrs. Claus came to the clinic to visit with the children. Linda (Mattie's child life specialist) came in with the Clauses, and together they showered Mattie with all the gifts he loved! From Legos to remote control airplanes! When Santa came into the room, Mattie's head was resting on the pillow in his lap. Mattie tried desperately to keep his head up long enough for this photo. After Santa left the room, Mattie's head collapsed back down on the pillow. 


Quote of the day: Christmas gift suggestions: To your enemy, forgiveness. To an opponent, tolerance. To a friend, your heart. To a customer, service. To all, charity. To every child, a good example. To yourself, respect. ~ Oren Arnold


While Peter and I were in Boston this week, I received an email from one of our new corporate sponsors. They were looking to feature Mattie Miracle at their January management meeting. To fulfill this request they wanted us to send them a ONE MINUTE video about the Foundation.... who we are, why we developed the Foundation, and what we do and accomplish. That is a lot to manage in one minute, which is why the final video is two minutes long. One has to be very succinct even in two minutes. 

Creating such a promotional video takes a lot of brain power, creativity, and time. Of course when it is emotional content for us, which makes it equally challenging. We couldn't work on this video during Christmas time and because Peter and I are going out of town this coming Tuesday, there was a great deal of pressure on us to develop this video today.

Peter and I have different skills and our work styles are different when it comes to taking on a task of this magnitude. Yet we found a way today to have a meeting of the minds, to brainstorm, and then develop. Thankfully Peter is also technologically savvy and was able to identify software that we could use to create a video. Creating a video was a FIRST for us! However, I am a big Barry Manilow fan, and to me his song.... I am your child, is truly touching and captures the essence of how important a child is to a family. Which is why I knew we had to download that song and insert it into the video. I did not want generic music, or music that came with the video making software. 

I will let you look at the promotional video and decide for yourself if the music works. I feel the timing and the emotions it evokes were exactly what I was hoping for. Though creating such a video in one day wasn't easy, I am so happy that our corporate sponsor suggested we do this and of course that we are given the opportunity to showcase the video in their management meeting. 

The "Who is Mattie Miracle" video:

Saturday, December 26, 2015

Saturday, December 26, 2015

Tonight's picture was taken in December of 2008. Mattie was five months into his cancer treatment by that point and already had two major limb salvaging surgeries. In fact, Mattie and Peter were sitting on the hospital bed located in our living room. Mattie was home recovering from his major surgeries, and unfortunately being home and knowing it was the holidays were difficult times for Mattie. Mainly because he was isolated, not feeling well, and the start of his post traumatic medical stress symptoms began. In the midst of chaos and great bouts of depression, there was this fun moment. Peter was working hard at trying to divert Mattie's attention, and these reindeer outfits worked for a bit. 


Quote of the day: Maybe Christmas,” he thought, “doesn’t come from a store. Maybe Christmas … perhaps … means a little bit more." ~ Dr. Seuss

Peter and I flew back from Boston tonight! It wasn't my kind of flight because it was super bumpy. The irony is before we got up in the air, the pilot said that we were going to have a smooth flight. Which is what I like to hear. After take off, we weren't up in the air for long when the turbulence started. It started and it did not end! 

The wonderful sight in the air was seeing a big Mattie Moon, which Peter captured through incredible clouds and fog!