Tuesday, February 18, 2014

Tuesday, February 18, 2014 -- Mattie died 232 weeks ago today.

Tonight's picture was taken in February of 2009. Mattie was home between treatments and though it was challenging, we tried to encourage him to use his walker at home. In so many ways Mattie was thoroughly incredible. Despite the pain he lived with, pain which would have sent most of us to bed or cowering in a corner, Mattie found a way to be up and about and to engage with the world. For the most part we carried Mattie around our home, from one place to another. Which was a feat because he was fragile, had constant pain, and ultimately really wanted to be independent. But when he did have the energy, he gave it his best effort to try to relearn to walk. I snapped this photo one day which I think illustrates his spirit.  

Quote of the day: If the wind will not serve, take to the oars. ~ Latin Proverb

Last evening while Peter was outside on the balcony and I was writing the blog, Peter had a dolphin sighting. Literally right by the dock of our hotel. Peter instantly called me and I jumped up and got to see this beautiful sight! Talk about being in the right place at the right time!

Today was another glorious weather day! In the upper 70s and with NO wind. It was delightful. This was our sight over breakfast. We sat on the deck of our hotel's restaurant and I admired the beautiful flower on their traveler's palm. The flower itself looks like a bird of paradise, in other words it looks like the profile of a bird!

Literally right next to me was our breakfast table. This is breakfast by the dock! I will have to remember this beautiful sight as we head back to the grayness of DC tomorrow. It is hard to imagine that some people live in sun year round and others of us suffer in the cold and gray depressing winter.

Peter and I drove for an hour today to Sarasota. We visited Sarasota many years ago, during our pre-Mattie days. Because we are determined to spend as much time outside as possible in this beautiful weather, we decided to visit the Marie Selby Botanical Gardens. A first for us! 

Marie Selby Botanical Gardens was officially opened to the public on July 7, 1975. Marie Selby's final wish was fulfilled, and the Selby legacy was in full bloom. Since the Gardens opened, the property has expanded from seven acres to nearly 13 acres. The elegant Mansion in this photo was purchased in 1973 and now houses the Gardens' Museum. The Gardens maintains a plant collection numbering more than 20,000 accessioned plants. Eight greenhouses include the stunning Conservatory where unusual flora can be seen year round. The Botany Department provides headquarters for the Bromeliad, Gesneriad, and Orchid Research Centers, and the Selby Gardens' Herbarium and Molecular Laboratory. The Marie Selby Botanical Gardens, a respected center for research and education, as well as a famous showplace, delights more than 180,000 visitors 
each year.

As we entered the gardens we were greeted by this plant called the Flaming Vine. It lived up to its name! To me it screamed out..... MATTIE MIRACLE!

This is a photo of me inside the Gardens' huge hot house. This Garden contains one of the largest orchid collections in the world. Specifically the Garden houses: 5,500 orchids, 3,500 bromeliads and 1,600 other tropical plants. I learned today what an epiphyte was!!!

Epiphytes are plants that live on other plants but are traditionally classified as non-parasitic. The most common epiphyte seen in Florida is Spanish Moss—not a true moss, but a member of the bromeliad family. Often called “air plants,” epiphytes attach to their host plants for support and as a means to reach more sunlight. Epiphytes, most abundant and diverse in tropical rain forests and cloud forests, can also be found in forests around the world. Epiphytes account for 10% of all plant species and are found in many plant groups such as the aroids, begonias, bromeliads, heaths, nightshades, orchids, ferns, and true mosses. Since they have no roots in the ground, epiphytes use special adaptations to obtain and store water and nutrients. 

Though Peter captured MANY photos within the hot house, I will share eight extraordinary examples of epiphytes with you! Check out this orchid.

This may not look like an orchid, but it is. Keep in mind these orchids are NOT growing in dirt. They are literally hanging from walls, off of other plants, and thriving.

Another stunning orchid!

I have never seen such a patterned orchid before.

This is your more common looking orchid, and yet there is nothing common about it. This hot house stopped people in their tracks. People were simply enamored by what they were seeing. 

Here you can see this orchid hanging in mid-air and also Spanish Moss growing into it.

To me, orchids have faces! What do you think?

This plant, also an epiphyte gets me every time. It needs a protein source to grow, and literally it achieves this source by capturing bugs, rats, and birds (YES!!!) inside its pitcher. As soon as something lands inside the plant, enzymes kill it and the plant begins devouring its prey for nutrients.

How do you like this fern? One of the largest I have seen! I am standing under it to give it scale. 

I love bougainvillea, but I have never seen a bonsai version. The brilliant color is captivating regardless of its size.

In addition to the hot house, there were expansive gardens all about. Gardens of cactus, a fragrant garden, mangroves, and a garden filled with flowering plants and trees. Not to mention a banyan tree in the middle of the property which is hundreds of years old. 

This particular garden caught our attention. Maybe it was the beautiful and melodious fountain within it! Nonetheless, if Mattie were with us, he would have been instantly attracted to this rain forest.

Within the rain forest garden, was a pond filled with koi. A sight which would have definitely intrigued Mattie. In fact, if Mattie were in tow, we would have bought koi food to feed the fish. Peter and I rarely go on vacations alone, but when we do, we reflect on our side kick who is missing. With Mattie, we experienced and saw things in a different way.

The Gardens have thought of everything. There is an extensive children's play area, filled with trees and things to climb on. I had Peter snap a photo of this so you could see what I meant. For us now we only look things like this from the outside in, rather than if Mattie were with us.... inside out. 

This is a red silk floss tree. Not a leaf on it yet the flowers are enormous. Like the size of a big rose. The birds LOVE this tree. There is practically a bird for every blossom. 

This is a Gumbo Limbo tree, which is considered in jest to be the unofficial tree of Florida. Why? Because the brownish red bark tends to peel, not unlike a tourist who gets a sunburn!!!

Within the fragrant garden was one of my favorite bushes. It was named.... the Vick's vapor rub tree! A tree I absolutely love, especially when sick! 

The Gardens are filled with lizards, of all shapes and sizes. Some of them walk right out in front of you, it is amazing there aren't smooshed lizards everywhere.

This glorious flower belongs to a banana
tree. If you look closely you will see a bunch of bananas growing on top of the flower.

No visit would be complete without a monarch butterfly sighting. Butterflies were flying all around us, however, only at the end of our visit did one actually stop moving and pose for a photo. A Mattie sign indeed.

After our tour of the Gardens, we drove into Lido Key, which is part of Sarasota. This key is filled with shops, cafes, gardens, and people. We had a lovely lunch at Cafe Europa, sat outside, and watched the people go by. 

It is hard to believe that our week in Florida has gone by already. Since most of it was spent working, this isn't surprising. We need many more days here to recuperate, but I am happy we had these three. I am still not 100% from the flu. I am not as symptomatic, but definitely not well either. The doctor told me that I could feel debilitated for a month and so far her trajectory is right on target.

Monday, February 17, 2014

Monday, February 17, 2014

Tonight's picture was taken in February of 2009 in the Hospital's clinic. As you can see Mattie was working with a pottery wheel and trying to make a clay creation. After Mattie's limb salvaging surgeries, he was unable to lift his arms very high. Certainly he couldn't lift his arms over his head. The pottery wheel and working with clay was very therapeutic for Mattie. He did not realize he was getting exercise this way, but he indeed was using his arms and hands to create. Sitting with Mattie were Jenny (Mattie's art therapist) and Whitney (one of Mattie's child life interns). Mattie always did better when he had those he trusted by his side encouraging him to play, create, and to be a child. Being a child in a very abnormal environment was a tall order, but it was thanks to people like Jenny and Whitney that this was even possible. 

Quote of the day: The past is a ghost, the future a dream. All we ever have is now. ~ Bill Cosby

Today we ventured to Weedon Island Preserve in St. Petersburg. The Preserve got its name after Dr. Leslie Washington Weedon. Weedon was the only physician in Tampa at the turn of the century. He was best known for his study of yellow fever. Weedon lived on the island with his wife and the Island had quite a history because at one time it housed an airport and even a movie studio, Sun Haven Studios which produced three movies. This photo captures the remains of the airport terminal building. In fact, a park ranger told us that the two stone pillars you see in the middle, were literally the arch through which passengers entered the terminal building. 

The preserve is an expansive 3,190-acre natural area located on Tampa Bay. We climbed up to an observation tower and literally we could see mangroves for as far as the eye could see. 

Here is a close up of one of the boardwalks we walked on today. The boardwalk took us in and among the mangroves for miles. About four to be exact!

This is what the root system within the mangroves looks like. Mangroves do not populate by seed, but instead through off shoots that grow from one tree to another. These root networks act like shock absorbers, cushioning coastal land from wind and wave energy. In addition, roots trap soil, reducing coastal erosion. Mangroves provide an important line of defense against hurricanes and other storms. This isn't surprising because to me this looks like a nest of wires that are intertwined and wrapped around each other. It would be hard to sever or destroy such a system of branches.

Along our journey we entered a peaceful bird sanctuary. It was so quiet there you could hear a pin drop. Water birds of all kinds populated this area, feeding on fish, shrimp, and other things in the water.  

Within the bird sanctuary were many great blue herons.

In addition to the great blues, there were Ibis (which is also nicknamed the Florida pigeon, because they are SO common), and a new one for me today was the Roseate Spoonbill. What a charmer! This bird has beautiful rose colored feathers and a bill that looks like a spoon, to scoop up fish!

There were many white herons to be seen as well. 

I am intrigued by all the Spanish Moss hanging off of many the trees. This is most definitely a different sight than what we see in the northeast or middle Atlantic region. 

While walking along one of the trails, we literally had an armadillo crossing! In fact, we saw three armadillos at the Preserve. I went from NEVER seeing an armadillo before, to now seeing four in two days. 

Is this not the perfect armadillo photo???

Check out this cutie sitting on a piece of wood! This lizard was so tiny, yet happy to bask in the sun. It was the perfect weather day in Tampa/St. Petersburg today, and I related to his need to capture the sun. Mattie would have absolutely LOVED the armadillo and lizard encounters!

After our visit to the Preserve, we went to downtown St. Petersburg and ate by the water. We walked the town, found a home made gelato store, and even snapped photos by the Vinoy. When Peter worked in St. Petersburg years ago, I visited him in March for a week and we stayed at the historic Vinoy. Seeing it over a decade later was still very special. The Vinoy is a historic Mediterranean Revival styled hotel in downtown St. Petersburg. On September 11, 1978, it was added to the U.S. National Register of Historic Places. The Vinoy was built in 1925 by Aymer Vinoy Laughner. Construction began on February 5 and took 10 months to complete. The hotel was a seasonal hotel open from around December to March. Rates were $20.00 a night, the highest in the area at that time. The hotel was a popular destination for celebrities ranging from Babe Ruth, Herbert Hoover, Calvin Coolidge and James Stewart. During World War II the hotel was taken over by the U.S. Army and used for a training school. The hotel was sold to Charles Alberding after the war for $700,000. The hotel continued to prosper for the next couple decades. In 1974 the Vinoy closed its doors and sold most of its contents. The hotel became a haven for vagrants until the early 1990s when it was bought by a partnership between Renaissance Hotels and Resorts and the Vinoy Development Corporation. A $93-million renovation was undertaken, and in two years the Vinoy reopened as an almost perfect replica of its former self.

Sunday, February 16, 2014

Sunday, February 16, 2014

Tonight's picture was taken in February of 2009. Next to Mattie were several valentine's day cards his classmates created for him and one of his friends even gave him this huge lollipop. Mattie got a kick of out it since it was the same size as his head! 



Quote of the day: To a person in love, the value of the individual is intuitively known. Love needs no logic for its mission.  ~ La Rochefoucauld

We woke up to sunshine this morning! When I opened up our balcony door, this is what I saw. There were three cruise ships in port. You can only see two in this photo. This was our first truly glorious weather day!!!

This is how big our balcony is, I wanted to photograph it so you could see why I am in love with the concierge person who upgraded our room for us at no extra charge.

After eating breakfast outside by the Bay, we rented a car and drove to the Cypress Creek Preserve which is a 7400 acre park whose land was purchased to provide flood protection and a public water supply. The park includes several trails covering 12 miles. Habitats include cypress and hardwood forests as well as slash pine, longleaf pine and palmetto in Florida flatwoods. Cypress Creek, a tributary of the Hillsborough River runs through the property. The park was filled with these eye catching yellow flowers.

I have heard and seen photographs of Spanish Moss, but I have never seen it up close and in person like today. This hanging moss literally covered all the trees and it made them look like they were magical as they blew in the wind. 

Along our walk we saw this tranquil body of water. The funny part is while we were looking at it, a group of bicycle riders passed us by and asked us if we saw "Mr. Gator." Clearly they are locals, and clearly there is a gator which inhabits these waters. If you doubt me, check out the sign below!

Not a sign I am used to seeing in Washington, DC!

Right by where Mr. Gator lives, we found this snake skin. This is not something that intrigues me at all, since I despise snakes, but I know if Mattie were with us today, this skin would have been coming home with us. Most likely it would have landed up in my purse!

Another Mattie find along our journey today was this enormous pinecone. The photo doesn't do it justice, because the pinecone was bigger than a human hand. Again, if Mattie were with us, it too would have landed up in my purse.

Now here's a new sight for me!!! An armadillo in the wild!!! Something caught my eye while we were walking and I told Peter about it. As we got closer to it, Peter informed me it was an armadillo. He had an amazing hard shell and long tail! Armadillo is a Spanish word meaning “little armored one” and refers to the bony plates that cover the back, head, legs, and tail of most of these odd looking creatures. Armadillos are the only living mammals that wear such shells.

A very upsetting sighting for us today was of these emaciated horses. We couldn't tell if these horses were abandoned on the preserve or whether they are wild horses. Either case, I was truly disturbed to see the rib cages of these beautiful animals. 

One of the distinguishing features of our walk today was fields and fields of palmettos (little palm trees). It was like wild brush for as far as the eye could see. 

We ventured on one of the walking trails today. A tree fell along the trail and I had Peter snap this photo of me pretending to hold up the tree. This is definitely something we would have done if Mattie were with us and he would have gotten a big kick out of it. 

I am not sure Peter or I intended to walk six miles today. But on the trail, we ran into the creek! The creek apparently had flooded out the remainder of the trail. So we literally had to walk back the way we came, which doubled our walking distance.

As we parted the preserve we heard the high pitched call of hawks. When we looked up in the air, we saw this incredible broad winged hawk. I have never seen such a hawk before, and neither had Peter. 

Certainly we could have spent the day by the pool or gone to the local museums. But our heads are full with content and we haven't had a chance to walk at all while in the conference for the last three days. So getting out in the fresh air, feeling the sun, and not being surrounded by people was a gift!

Saturday, February 15, 2014

Saturday, February 15, 2014

Tonight's picture was taken in February 2009. Mattie was home between hospital stays and what kept us all grounded and focused were Legos. They were therapeutic for all of us. They had a way of transporting us away from cancer, chemotherapy, surgeries, and psychological pain. Even when it was too difficult for us to talk with one another, we connected through building. The structure next to Mattie was something that he and Peter built together. That year while battling cancer, we must have bought every single Lego kit on the market. Our home had thousands upon thousands of Lego bricks everywhere. 


Quote of the day: Age does not protect you from love. But love, to some extent, protects you from age. ~ Anais Nin

Though we have been in meetings basically ALL day since Thursday, I did want to pause to show you some of the wonderful sights we have captured along the way. Each morning we have had a glorious sunrise over the Bay. We are certainly grateful we are in Florida and NOT in DC, contending with snow and unpleasant weather. But I do have to give this caveat.... Tampa is NOT like Southern Florida. It is windy and quite chilly for the most part. Of course in comparison to DC, this is relative, but it also isn't what most of us think of, when we reflect on Florida.

Check out this glorious photo of Mattie Moon that Peter captured! In a way, I think this is very symbolic of Mattie watching out and after both of us during the conference.

From our hotel window, we can see the arrival and departure of cruise ships daily. I am enamored by large ships, and I love to watch them traverse the water. Maybe because they are so HUGE, and seem defy logic and reasoning in their ability to move that they capture my imagination. This was a morning arrival of a Carnival ship.

This afternoon, when we got back to our room, we went out on the balcony and watched "Brilliance of the Sea" depart from port. It was a wonderful sight!

Peter snapped a photo of me at our exhibit booth today! I may NEVER get out of ALL my sweaters. I literally wore two very heavy wool sweaters during all conference days, mostly because it is chilly out and inside it is AIR CONDITIONED! A wonderful feeling for a person who is already NOT feeling well. I have to say that our exhibit table may have been one of the most colorful ones. To the conference, I shipped over 80 recyclable Mattie Miracle bags, microfiber clothes, brochures, business cards, and about 10 pounds of candy to give away. I know that the LARGE draw to any conference table is the CANDY. This year I made a special effort to get popular candy bars! It was a huge hit. I had people throughout the conference tell me they stopped by our table for a sugar pick me up treat, and that we had the best candy! 

While at the booth today, I had the opportunity to chat with many visitors. One woman was a cancer survivor and shared her story of courage with us. Yet she said that when she looked at Mattie's picture, she wasn't sure why she survived and Mattie didn't. I could see she was grappling with that question and also knowing what she endured and survived, she wasn't sure how we survived and are still surviving the loss of our Mattie! 

Also while at the booth, one of our psychosocial think tank professionals came up to chat with Peter and I. She had been reflecting on the think tank and also all her interactions with us. What I found so special about her comments was that she observed every attention to detail that we put into our events, marketing material, booth set up, meals we provide our team, and so forth. This made me feel very good, because what she was saying is 100% accurate!!! Details are important to me, and what image we project represents all aspects of Mattie Miracle. Though in comparison to other cancer groups, we are small, I don't want small to equate to unprofessional or ineffective. So her positive feedback made me see an outsider's perspective.  

Peter and I attended more sessions today and literally after about almost 24 hours of training since Thursday, we are mentally wiped out. We heard about cutting edge psychological research with childhood cancer and trends for distress screening of children and families. It has been a lot to absorb and take into account and of course we approach all data and research outcomes with Mattie and our situation in mind. As I say to psychosocial professionals all the time..... they may work with hundreds of families over the course of decades, but that still doesn't give them the insight of having the lived experience. I am always amazed when I hear about certain interventions or the way particular studies were designed. I am amazed because I can already tell you whether this will work or not work, why? This isn't unique to me, but most likely would apply to any parent. Simply because we lived it and we know the challenges with timing, the issues associated with intense caregiving, and also living within a hospital setting. What these research studies have verified for me however is NOT all childhood cancer experiences are the same. Based on the type of cancer, the nature and intensity of treatment will differ. This makes a huge difference in the psychosocial impact. Certainly I know this intuitively since most of the families I came across in the hospital did not deal with multiple limb salvaging surgeries, a sternotomy, and a host of other issues associated with osteosarcoma.

As I write this, the think tank and the conference are now complete. Did we accomplish what we set out to do? Most definitely! But my greatest hope is one day I will find some big donors and corporations who will stand behind our work and support the efforts we have the vision to accomplish. It isn't a matter of will it happen, it is a matter of when! Nothing has been handed to Mattie Miracle, it has instead been born out of hard work, focus, determination, and the ability to make connections with the right professionals. 

Friday, February 14, 2014

Friday, February 14, 2014

Tonight's picture was taken on February 14 of 2009. This has to be one of my favorite photos taken at the hospital. It was snapped by Jenny, Mattie's art therapist. She captured this special moment of Mattie giving me the valentine's he made for me that day. A day I will never forget. What I also love about this photo was Jenny captured a very familiar scene in my memory. Mattie typically liked to touch nose to nose with me and stare into my eyes. I could try to describe this to you, but the photo says it all. This position wasn't contrived, this was Mattie!


Quote of the day: Only in the agony of parting do we look into the depths of love. ~ George Eliot

After the think tank yesterday, we took our key team members out to dinner. Here is a snapshot of our group.
Back Row from left to right: Dr. Bob Noll (Children's Hospital of Pittsburgh), Peter, Dr. Andrea Patenaude (Dana Faber), Dr. Lori Wiener (NIH), Dr. Anne Kazak (Nemours)
Front row from left to right: Wendy Pelletier (Alberta Children's Hospital, Canada), Denise Tordella (Private practitioner and Mattie Miracle supporter), Vicki, and Dr. Mary Jo Kupst (Medical College of Wisconsin and Mattie Miracle consultant). It was a wonderful and lively dinner and a great way to end a productive 8 hour think tank!

Peter and I attended conference sessions for about 9 hours today. One of the keynote speakers at the conference was Dr. Philip Pizzo, a distinguished pediatric oncologist. We had the opportunity to meet Philip and he graciously acknowledged Mattie Miracle's work and mission to challenge the field to create a psychosocial standard of care. I am pictured here with several amazing leaders in the field.
From left to right are: Vicki, Dr. Andrea Patenaude, Dr. Jimmie Holland (Sloan Kettering, and considered the grandmother of psycho-oncology), Dr. Barbara Jones (University of Texas at Austin), Dr. Lori Wiener, and Dr. Philip Pizzo. 

In addition to attending the conference, we are also hosting an exhibit booth. Our friend and supporter, Dave, is helping us man this booth. This is Dave and Denise's second think tank with us and we truly value their physical and emotional support. It isn't easy to be the only set of parents who lost a child at this conference. The rest of the attendees are clinicians. Though we can understand and are intrigued by their work, their work effects us personally. So in essence the hours in sessions impact us differently. For the most part the sessions are stimulating but then we always come across the psychological camp with research illustrating that kids with cancer thrive just as well as the average healthy kid. Meaning that there are no differences in depression and anxiety levels in these two VERY different populations. Naturally Peter and I sit back and question this research since it does not apply to us or MATTIE, nor to many of the families we now interact with. Having received my doctorate, I am aware of the complexities of having a research agenda and that data can be analyzed to confirm one's theory. We would like to think that research is pure, but we can never discount the human factor. I frankly can't even wrap my head around cancer having NO psychological impact on a child! So I will leave it at that. 

The highlight of my day was watching Peter in action this morning. We attended the morning plenary, which included speakers addressing the new national standard of psychosocial care in the adult cancer world. After the talk, Peter got up to ask the speakers some questions. Peter represented the Foundation and basically told an audience of 500 people about Mattie Miracle's work and our commitment to a psychosocial standard of care in the childhood cancer world. I was very proud of him and his comments started a snow ball effect of interest. Way to go Peter!

Thursday, February 13, 2014

Thursday, February 13, 2014

Tonight's picture was taken on Valentine's day of 2009. My last Valentine's day with Mattie. This photo captures a very special moment between us. Mattie worked that afternoon with his art therapists to create a few hand crafted surprises for me. One was a crown of hearts for my head and the other was a box decorated with hearts and filled with all sorts of art work and messages from Mattie. I still have this box and is stored in one of my closets. 


Quote of the day: The world is so empty if one thinks only of mountains, rivers, and cities; but to know someone here and there who thinks and feels with us, and though distant, is close to us in spirit, this makes the earth for us an inhabited garden. ~ Goethe

Today Mattie Miracle held its second psychosocial Think Tank at the American Psychosocial Oncology Society conference in Tampa, FL. We had twenty people attend this very intense nine hour working session. What brought us to where we are today? Well I felt a bit of history was important for the group to hear this morning. 


Naturally, I shared Mattie's story and aspects of his battle. Though Mattie's physical treatment was horrendous, at the end of the day what remains with us even today are the psychosocial issues. These issues range for each child but for us it was watching Mattie battle with isolation, depression, anxiety, medical post traumatic stress disorder, an inability to walk and be independent, and the list went on! I explained this in context of what motivated us to start a 501c3, one which is focused upon psychosocial education, awareness, and enhancing access to supportive services.

Soon after Mattie died, I began doing searches of the scientific literature using keywords such as 'psychosocial' and 'trauma.' A name that kept popping up on the internet was Dr. Anne Kazak. So in 2010, I emailed Anne and told her how much I appreciated her research and that it resonated with me. Anne immediately wrote me back and it was through her, we built our psychosocial dream team comprised of now five professionals. During 2010, we also began advocating on Capitol Hill, not for medical research but for psychosocial care of children with cancer. With each congressional staffer visit, the question always posed to Peter and I was..... is there evidence based data supporting the need for psychosocial care and interventions? At the time Peter and I did not know, so we reached back out to Anne and decided to do something gutsy, which was to host the first ever psychosocial childhood cancer symposium on Capitol Hill in March of 2012. This was an historic event in which 12 states were represented, over 85 mental health professionals were in attendance, along with congressional staffers and four congressional members. We wanted to show congressional staff that their psychosocial questions could be answered and to do this we assembled a team of leaders in the field who gave a congressional briefing and then workshops for the next eight hours. 

From that symposium, Lori Wiener, who served on the panel of symposium experts, contacted me to encourage me to consider financing and hosting the first ever childhood cancer psychosocial think tank at the American Psychosocial Oncology Society conference in Huntington Beach, CA. That was another historic event which brought together a multi-disciplinary group of psycho-oncology professionals to brain storm standards of care and how to draft them! In one year's time, a group of over 40 professionals have produced an 110 page document backed up by evidence based practices and/or professional consensus.

Today's event was designed to review each of the standards, recommendations, and to discuss next steps. However, what I do want to mention here is that developing a standard of care was Mattie Miracle's brain child. No one else's and this it is something that we feel passionate about in honor and in memory of Mattie. Do I want to help other children and families? ABSOLUTELY! But I am the leader of a Foundation who was also the mom of a child who died from cancer. My motivations will always revolve around Mattie, his legacy, and finding meaning for this terrible tragedy.  

One of our think tank participants, two years in a row, is a psycho-oncology leader from the Netherlands. Today she presented me with this beautiful tulip candle in memory of Mattie and to thank us for the work we are doing. This evening Peter snapped a photo of this candle with the MOON in the background. Very fitting for our Mattie Moon. This candle meant a great deal to me because it not only came from the Netherlands, but Martha remembered Mattie Miracle's color is orange and as she stated today in the meeting.... let's make the miracle happen! Which is to finalize a standard of care. I couldn't have said it better myself.

Wednesday, February 12, 2014

Wednesday, February 12, 2014

Tonight's picture was taken in February of 2009. That day Mattie went to clinic and his art therapists, Jenny and Jessie, asked him if he wanted to paint something on the Pediatrics welcome sign that was going to placed by the elevator banks on the fifth floor of the hospital. Mattie was totally disinterested with that whole request until I suggested that he could put his foot print on the sign. Mattie's left leg was nicknamed "George." After the lovable monkey, Curious George. Not unlike Curious George, Mattie's left leg was the only limb without a tumor in it, and therefore was never operated on. It functioned beautifully and in many ways, Mattie's left leg and foot almost operated like an arm and hand. Any case, you can see Jessie and Jenny putting red paint on "George." The photo below shows you the sign that hangs on the fifth floor of the Hospital with Mattie's footprint on it. As people pass that sign each day, they probably do not know whose hand print and footprint are on that sign, but I remember all too well. The hand print belongs to Baby Morgan (who is no longer a baby!) and the footprint belonged to Mattie. 

Mattie's footprint is near the 'N' in Georgetown. A part of Mattie will always remain on the fifth floor of the hospital. 















Quote of the day: The grand essentials of happiness are: something to do, something to love, and something to hope for. ~ Allan K. Chalmers


Peter and I are safely in Tampa. It was an uneventful flight, which is the best kind. About 13 years ago, Peter worked in Tampa. Literally he would hop on a plane on Monday and return to DC on Friday. We managed this for over a year. One spring I came down to visit Peter and literally for an entire week all I experienced was rain. I mean torrential rain. I frankly have never seen Tampa when it wasn't raining. Guess what, as I am typing this, it is pouring! I am thrilled to be on the ground and not in this rain storm. 

Actually we are lucky we were able to get to Florida at all, since the East coast is at a stand still with pending snow. In fact, several of our think tank folks have canceled flights and one of the keynoters for the conference is now not coming because of canceled flights. We are fortunate to have our friends Denise and Dave with us. Not only are they friends but they are also Mattie Miracle supporters, who helped us today with luggage and brought all sorts of teas for me. They come to attend the think tank and to help us man our exhibit booth on Friday and Saturday. Help which is greatly appreciated!

When we arrived at the hotel, the front desk was busy, so they referred us to the concierge desk for check in. That was a fortunate problem for us, because it was there that we met Dorcas. Dorcas just transferred to the Marriott from the Ritz Carlton. The key is she worked at the Ritz Carlton in Georgetown, in Washington, DC. So we had a lot to talk about. Needless to say, Dorcas has taken very good care of us. She upgraded our room to the 24th floor, with an amazing balcony and view, and she gave us a reduced price on top of everything else. NOT the price I was quoted when I booked the reservation. Clearly nothing to argue about, I am not used to prices going down, only UP!   

Even our taxi driver was pleasant and knowledgeable. He gave us some history on Tampa, specifically about the historic neighborhood in Tampa, called Ybor which is located just northeast of downtown. Ybor was founded in the 1880s by cigar manufacturers and was populated by thousands of immigrants, mainly from Spain, Cuba, and Italy. For the next 50 years, workers in Ybor City's cigar factories would roll millions of cigars annually. During the great Depression the factories closed and with that Ybor fell into disrepair. Now of course it is restored and is a National Historic Landmark. It is our hope to see it while we are here.

I am trying to take it easier tonight, as I am still recovering. The Foundation's think tank is from 9am to 4:30pm tomorrow, and after which we will need to set up the Mattie Miracle exhibit hall booth. So it will be a very full day for us and Mattie Miracle!