Mattie Miracle 8th Annual Walk & Family Festival was an $88,000 Success!!!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

Random Shots of Mattie, Family and Friends

July 26, 2014

Saturday, July 26, 2014

Saturday, July 26, 2014


Tonight's picture was taken around July 25th of 2009. The cake came from Linda, Mattie's child life specialist. She wanted Mattie to be able to celebrate my birthday, so she got him a cake to give to me. Mattie enjoyed celebrating and I remember when Peter's birthday approached Mattie would always help me bake something. Mattie got into the spirit of the event and most importantly in acknowledging the other person in his life. He seemed to understand the importance of that at a young age. 






Quote of the day: I did not know how to reach him, how to catch up with him... The land of tears is so mysterious. ~ Antoine de Saint-ExupĂ©ry


Peter and I are back in DC. It was such a quick trip, it feels like we just left in a way. This morning we walked around the Boars Head Inn property and I took some photos of what I have been looking at the past two days. So these amazing crape myrtles graced our balcony on the second floor. These are the beautiful pink sightings I had when I opened our balcony door. 



From the balcony, we could see this beautiful lake. It truly was a very tranquil and picturesque place to unwind. The birds were singing and I wish there was room in the Inn for us this weekend. I would have stayed to try to relax more. But literally every room was taken this weekend. Which is why we headed home today. 



The flowers around the Inn were stunning, as you can see this bank of Black Eyed Susan's!












I snapped this photo because to me this looked like a bridge out of a Monet painting!


















After we said goodbye to the Inn, we went to walk in Historic Downtown Charlottesville. The downtown area is lined with shops and restaurants. We walked for about an hour and then also went through the campus of the University of Virginia. The University that Thomas Jefferson founded and originally designed himself. I could see how a part of the campus had a very Monticello-esque feeling to it!


On our drive home, on Route 29, we passed an ice cream store that caught my attention. It was packed with cars in the parking lot! But what was noteworthy was the name and its signage! The MOO THRU! Here is what I found out about the Moo Thru from its website, "the ice cream is made from only the freshest ingredients. The milk used in Moo Thru ice cream comes from our own prize winning grass fed Holstein herd grazed on a farm along the banks of the Rappahannock River about a mile from the Moo Thru." Being a cow affectionato, to me this ice cream store is worth stopping at the next time we head down to Charlottesville.  


The other noteworthy sighting on our car trip is corn for as far as the eye can see. It is a glorious sight! 


July 25, 2014

Friday, July 25, 2014

Friday, July 25, 2014

Tonight's picture was taken on July 25 of 2009. This was the last birthday I celebrated with Mattie. That day, Mattie constructed this beautiful lighthouse birthday card for me, with the help of Peter's parents. Mattie and I saw many lighthouses together and the card captured those special adventures. It is hard to believe that with that beautiful smile and looking so happy, Mattie died a month and a half later. 








Quote of the day: And perhaps there is a limit to the grieving that the human heart can do. As when one adds salt to a tumbler of water, there comes a point where simply no more will be absorbed. Sarah Waters


We started the day with sunshine! Which after yesterday was a glorious treat. This morning we woke up to birds singing and outside our window is a beautiful lake. There is something quite delightful about the old world charm of the Boar's Head Inn. It started with breakfast this morning, from how to where it was served. It isn't fancy. But it is charming, like staying in a country inn. With warmth and attention to detail. I am so used to cities where no one wants to connect with ANYONE!  

Peter and I went to visit Monticello. The home of Thomas Jefferson. Thomas Jefferson taught himself to speak French, Italian, and other languages. He was a gifted architect (also a self taught skill) and what appears to be what I would call a "gadget man!" He named his home, Monticello, which in Italian translates to "Little Mountain." Which is perfect for this home, because it is tucked right into a mountain. A very ideal and tranquil setting. It took him 40 years to build Monticello and this home has NOTHING to do with his public or political life. It had everything to do with his life as a man. His love for learning and for experimentation with plants, science, learning, language, and technology. Every aspect of this comes through in this house. He also was the founder of the University of Virginia. A campus which had NO religious affiliation. For he believed education and religion should be separated, and therefore created such an institution for this to occur. On his property, perched up high he would look through the trees with his telescope to assess the progress builders were making and this gave him great joy when he was in his late 70s!  
Here are the facts on Thomas Jefferson. He was the author of the Declaration of Independence and the Statute of Virginia for Religious Freedom. He was the third president of the United States, and the founder of the University of Virginia -- voiced the aspirations of a new America as no other individual of his era. As public official, historian, philosopher, and plantation owner, he served his country for over five decades.
Of course given the era that Jefferson lived, he maintained about 200 slaves. In fact, now historians believe that Jefferson was the father of one of his slave's children. Jefferson's wife died at an early age. He had six children with his wife, of which only two remained alive. He never remarried. I realize it would be very easy for us to judge Jefferson by our modern standards and condemn him for his decisions and choices. Naturally as Peter and I walked through his home, we did not condone the slavery that we heard about or the persecution or any individual. Quite on the contrary. But I live in 2014, not in the 1770s. As I watched a documentary on Jefferson at Monticello, we got to understand that Jefferson himself despised slavery, but he also admitted that he did not have the courage to address this issue in his lifetime. That it would have to be for the next generation. At least he was candid about it and honest. 

This is the beautiful exterior of Monticello! We went on a first floor tour of the house. We were unable to take photos inside the house, so I downloaded a few from the website to show you. 







To me, Monticello had a very masculine feeling inside! But that could be because Jefferson's wife was not living in the house with him. He designed the house, and really it was like his classroom and his place for experimentation! This was the grand entrance way! NOT at all like George Washington's Mount Vernon!!! Instead it has a very classroom feeling to it! Jefferson was clearly obsessed with time. Clocks seemed to be in every room. Right over the door was an impressive clock whose case was designed by Jefferson. The clock ran on gravity. The weights were cannon balls!  Also in this entrance way were art displays. This was designed to keep his visitors busy and entertained while they waited for him. There were 11 copies of old Master paintings as well as busts of prominent figures such as Alexander Hamilton and Voltaire. The room held natural history specimens such as antlers and bones, as well as maps, such as one of Virginia as surveyed by Jefferson's father, Peter Jefferson, To accommodate many visitors, the room contained up to twenty-eight chairs.


The dining room featured one of Monticello's thirteen skylights, a wine dumbwaiter on either side of fireplace which brought wine up from the cellar below and a serving door with shelves which enabled the help to move dishes in and out of the room more easily and with fewer intrusions to diners. There were also Wedgwood decorations on fireplace! But it was Jefferson who designed the dumbwaiters on either side of the fireplace to bring wine up from the cellars. He was completely into gadgets and inventions and also very influenced by the culture and customs of France. At one point he was the Minister of France, and as such, he learned a great deal about the cuisine of France. From wine to food!


We now have entertainment rooms. Back then they had Palors! In his palor, Jefferson had games, art, and music. The room displayed much of Jefferson's art collection and was the site of weddings, dances, and christenings. Several tables for cards or other amusements were in the room, as well as musical instruments such as a harpsichord and piantoforte. 




This room was Jefferson's bedroom and office. The bed was in an alcove. A technique of architecture he learned in France. Though he was over six feet tall, this bed looked SUPER small. But they say this was the size of his bed and he had a pink bed spread not unlike this one. The round holes at the top of the room, were air holes. Not windows. This was where he stored his clothes. Like a closet for his clothes, when they were not in use! The funny part is to access them you needed a ladder.




On the other side of the bed was his office. What I love about this office, was this particular gadget on the deck. It was called a polygraph. Of course when we think of a polygraph, we think of a lie detector machine. In his case, the polygraph was like a xerox machine. As he wrote a letter, in tandem the machine had a pen copying his message on a piece of paper right next to him. Since he was a prolific writer, having copies of his work were crucial. 

The exterior of the house
was very special and was to be appreciated. However, I was a bit surprised by the LACK of flowers. But the garden tour explained this!








Glorious Sunflowers!













My Peter Jefferson in front of Monticello! I think it is funny that Thomas Jefferson's father's name was Peter Jefferson. Peter's middle name is Jefferson! Though Peter's middle name is a family name, in many ways, Peter is a lot like Thomas Jefferson. Very time conscious, very into learning, and VERY much into gadgets and understanding how things work!

Vicki in front of the Blue Mountains.












Thomas Jefferson wanted to grow grapes and to start his own vineyard. The problem was he never watered his grapes. He was in the mountains! Any water he brought to the house, was for drinking, cleaning, or bathing. Watering flowers and a garden was low on the priority list. Which explains why there aren't English type gardens around this house. 

Jefferson was an avid gardener! The vegetable   garden was a kind of laboratory where he could experiment with imported squashes and broccoli from Italy, and beans collected by the Lewis and Clark expeditionfigs from France, and peppers from Mexico. Although he would grow as many as twenty varieties of bean and fifteen types of English peas, his use of the scientific method selectively eliminated inferior types.

July 24, 2014

Thursday, July 24, 2014

Thursday, July 24, 2014

Tonight's picture was taken on July 24 of 2008. Mattie had been diagnosed with cancer the day before and on the 24th we went to Georgetown University Hospital and met his oncologist. You may notice a boat floating in the tub. This boat was made out of a cardboard box that Mattie constructed in the cancer clinic with his art therapists. Naturally Mattie wanted to take the boat home and float it in the tub. This was one of MANY, MANY card board boxes Mattie constructed with, and Mattie's art therapists learned quickly the importance of saving all shipping boxes that came into the clinic for Mattie!


Quote of the day: There is no point treating a depressed person as though she were just feeling sad, saying, 'There now, hang on, you'll get over it.' Sadness is more or less like a head cold- with patience, it passes. Depression is like cancer. ~ Barbara Kingsolver


Peter and I made the drive to Charlottesville, VA today for several reasons. We both needed a break from constant work. I have been staring at a computer screen day in and day out for over a month, so much so that my eyes are twitching and I am having trouble concentrating. Second, with the anniversary of Mattie's death, it is a time of year that continues to be very challenging for us, as is summer in general. Then the final reason is tomorrow is my birthday. My birthday is fraught with major issues for me. Mattie was diagnosed with cancer two days before my birthday in 2008, and somehow, that has forever changed the whole notion of this day for me. As Peter often says..... since Mattie's death, all holidays and milestones a family normally celebrates are impossible for us to enjoy any more, so a birthday is no different, and sometimes when it all gets too overwhelming we just need to get out of town.  

Back in the days when Peter was in management consulting, he would come down to Charlottesville to recruit candidates at the University of Virginia. Peter had always talked about the Boars Head Inn and how special it was, so I decided we should go see it and stay there a few days, so here we are. Surrounded by the history of Thomas Jefferson ALL AROUND ME!

If there is one constant to the Washington, DC scene in the summer, it is rain and a lot of it. Today was no different. On the drive from DC to Charlottesville it was not bad, but once we reached Charlottesville, things really picked up. It was a deluge! Rain like I have never seen or experienced!

Charlottesville is known for its wineries. In fact there are 30 in the region which have been inspired by Thomas Jefferson's vision of wine making. These 30 vineyards are on the Monticello Wine Trail with all historic significance and amazing views of the Blue Ridge Mountains. My friend Annie, who lives close to Charlottesville, recommended that we visit Pippin Hill Farm and Winery (http://www.pippinhillfarm.com/). Which offers a vineyard tasting room and farm to table menu which makes it a distinctive wine and food experience. We arrived at the winery between downpours and had just enough time for Peter to take a picture of me in front of the sign and for us to make it to the covered porch.

The approach drive climbing up the hill to the winery.  The scenery was something out of a movie, with rolling green hills, open fields, rows and rows of grapes and seated neatly near the top of the hill a beautiful winery.
This is the walkway leading to the winery.  It was lined with beautiful hydrangeas getting ready to bloom.  As you can see in the background, the clouds were approaching quite rapidly, so we moved quickly to get under the cover of the winery's beautiful covered porch.




We settled in on the porch and got comfortable, and a few minutes later we watched as the entire valley in front of us was quickly overcome with the downpours, clouds, and driving rain. It was fantastic to watch under the cover of the large porch (see below).

Peter took this shot of one of the hills across the valley. There was something quite stunning about watching the storms blow through (especially because we were not really getting wet). We ordered lunch, sat and chatted and watched mother nature's show in front of us.
Between breaks in the storm, I had Peter run out and take some pictures of the grapes growing. It was quite a sight to see all these long rows of vines, some of which had grapes on them. 







This is a shot of the porch where we sat, protected from the rain, and enjoyed a slow afternoon of lunch and rain watching.
Peter captured the view of the valley from the porch and the table where we sat. Meanwhile in the distance we could see cows grazing, totally unfazed by the downpours!


No trip to the countryside would be complete without my favorites: cows!  Sure enough, once the rain let up, we could see a herd slowing making their way across their pasture land, grazing in the rain as they went.

This is another shot of the beautiful wildflowers that the winery had planted contrasted by the rows of grape vines behind them. The sights were priceless!
After the winery tour, we traveled to the Boars Head Inn and checked into our room. Waiting for us when we arrived was a beautiful handpicked bouquet of flowers that our friends, Annie and Alex, who live near Charlottesville picked from their garden and had left for us at the front desk, as a welcoming gift to Charlottesville.  I particularly like the collection of different sunflowers so prominently displayed in the bouquet. I am a huge sunflower fan! When Mattie had cancer, our care team would give me sunflowers. To me they are a symbol of happiness, strength, and courage. So as soon as we walked into our room, I knew they were from Annie. I know Annie grows sunflowers and she loves them too. 

I met Annie shortly after Mattie died, while advocating on Capitol Hill. Annie lost her daughter, Eloise, to cancer 8 months after Mattie. When we met, we seemed to share many similar thoughts and feelings. Over time, we continued to write to each other and we would meet for lunch whenever Annie would come to DC. This is the first time Peter and I are in Annie and Alex's neck of the woods and it was lovely to be able to get together tonight and have dinner. As I told Annie, great sadden brought us together, but her friendship is very important to me and helps me put my own feelings into context at times which I appreciate. It is ironic that Annie's birthday is the day after mine, so tonight we celebrated both birthdays.


July 23, 2014

Wednesday, July 23, 2014

Wednesday, July 23, 2014

Tonight's picture was taken on July 23 of 2008, the day Mattie was diagnosed with cancer. This is a day Peter and I shall never forget and today marks the sixth anniversary of this event. But like all anniversaries, as time moves on, so do the people who shared this moment with us. Time may heal the wounds of everyone else around us, but it hasn't healed ours and as people forget it only exacerbates how we feel. 


Quote of the day: Oh, sometimes I think it is of no use to make friends. They only go out of your life after awhile and leave a hurt that is worse than the emptiness before they came.  L.M. Montgomery


On the anniversary of Mattie's diagnosis, it seems appropriate to reflect on the day that he was diagnosed. Two weeks before diagnosis, Mattie was enrolled in a tennis camp with his friend, Charlotte. In fact, I always credit this camp for identifying the issue before Mattie broke a bone, which is a very typical way kids with osteosarcoma are diagnosed. Mattie had never played tennis before, so it seemed very plausible that he injured himself in camp. Mattie complained of arm pain and he was having trouble lifting his arm. He couldn't lift his right arm over his head at all. While he was in the second week of camp, I had to attend a conference in San Diego. So I flew out to San Diego and Peter took off of work to spend those days with Mattie. It was during that time, Mattie and Peter designed two garden fountains for me for my birthday. Gifts that are precious and priceless to me and I still use them today! In fact while I am writing this book chapter this summer, I have the windows open to listen to Mattie's fountains!

While I was at the conference, I would call home daily. Peter would give me a report about Mattie's arm. I did not like what I was hearing and knew as soon as I got home, I was taking Mattie to the pediatrician. Which is literally what I did. I got home on a Saturday and on Monday, I took Mattie to be examined! Fortunately Mattie had a great pediatrician who took us seriously. Because the number one reason children's cancer metastasizes at the time of diagnosis is because it isn't detected early. Pediatricians are not used to screening for childhood cancers, and it is understandable because it is rare. After all, for example only 3% of children in the US are diagnosed with osteosarcoma, the kind of cancer Mattie had!  

Mattie's doctor sent us for an xray that day. Since Mattie never had an xray before or any kind of scanning, he was NOT afraid of the process at all. He hopped on up and complied. However, I was with the tech behind the glass partition and I could tell he wasn't happy with what he was seeing which perplexed me. He just kept taking xrays. But again, I thought nothing of it. He then escorted us to a holding room, which had other people in it, all adults. While in the room a phone rang. None of the other patients answered it, so I went over to get it. The person asked to talk to Mattie's mom, which of course was me. On the phone was the radiologist who proceeded to tell me that something was found on the xray and I had to go back to the pediatrician's office. But I did not like his tone on the phone, so I told him I wasn't leaving the room until he told me what he saw. It was at that point on the phone, in front of a group of strangers, that I heard Mattie had osteosarcoma. With Mattie watching me no less. 

When he told me Mattie had osteosarcoma, I had no idea what that meant, so I asked him for clarification. He told me it was a form of bone cancer and I asked him about treatments. Again, he was sketchy and told me to go see Mattie's doctor. I kept calm for Mattie's sake and somehow found my way back to the doctor's office with Mattie in tow. I then text messaged Peter to come to the hospital. Mattie's pediatrician seemed upbeat about the prognosis and treatment, while I felt my world was crashing in on me. Of course what she did not know at the time was this was only one of many primary bone tumors that Mattie had. With additional scanning, we learned that Mattie had a bone tumor in both arms, his right leg, and his left wrist, making Mattie's case HIGHLY unique and very rare.  

This may have occurred six years ago today, but for me, it may have happened yesterday! The details are very clear in my head. As I imagine anyone's cancer diagnosis day would be!

July 22, 2014

Tuesday, July 22, 2014

Tuesday, July 22, 2014 -- Mattie died 254 weeks ago today.

Tonight's picture was taken around this time of year in 2008. How do I know this? Because on July 23 of 2008, Mattie was diagnosed with cancer. This is a day Peter nor I will ever forget. I will share with you how Mattie was diagnosed tomorrow. It is like a movie reel playing over and over in my mind. I can picture everything quite vividly! In any case, once we found out Mattie had cancer, Mattie felt like decorating with Christmas lights. So though it was July, out came the lights! It is funny how cancer put everything in perspective! Meaning that NOTHING really mattered at that point... we lived in that absolute moment. 

Quote of the day: I've been making a list of the things they don't teach you at school. They don't teach you how to love somebody. They don't teach you how to be famous. They don't teach you how to be rich or how to be poor. They don't teach you how to walk away from someone you don't love any longer. They don't teach you how to know what's going on in someone else's mind. They don't teach you what to say to someone who's dying. They don't teach you anything worth knowing. Neil Gaiman

Though I am not in total agreement with tonight's quote, I do get the sentiment and do appreciate the overall gist of what it is saying. I do think schools today are missing the boat! They are rewarding all the wrong things and parents are right up there promoting and pushing their kids to an absolute extreme. With grades and sports! It is no wonder the mental health profession will be alive and well for a very long time. I of course have a very perverse view of the world, because I saw my son develop cancer and die. But I can honestly say, whether he I got all straight A's in my lifetime, graduated with honors, and so forth, in the long run really made NO DIFFERENCE. It had NO IMPACT on whether I could save my son and he could have a healthy and happy life. For you see there is more to living than grades, excelling in sports, and sheer competition. I wish most of the women I associate with could understand this, but this falls on deaf ears!

Today I continued writing. I realize I am burning out quickly. I apparently snapped one person's head off today, and another person on the phone said I sounded very down. So fortunately I am getting away for two days this week. I need time away from the computer. I know I am brain dead, because I am reading things and I can't even process what I am reading. 

I continued to write case examples from Mattie's cancer journey today. I am still on the patient advocacy section of the chapter. One of the examples I highlighted focused on the advocacy strategy of limiting! Limiting interactions between health care providers and the child, or in our case not only with Mattie but with ourselves. Research has shown that parents have to advocate at times to limit such interactions for their own sanity and for the effectiveness of care. Mattie's first oncologist was not a good match for our family. Peter knew this right off the bat, but I tolerated him for quite some time only because he was referred to us by Mattie's surgeon. But it was a mistake on my part to have put up with this doctor for so long, because it caused great tension between Peter and I. This oncologist was greatly insensitive. 

I could make a list of all the things he did, and you most likely would say, are you kidding???!! He once told me he was going to have a worse day than me, and you have to understand while he was telling me this, Mattie was getting a chemo infusion. Then one day, he told me he was taking his family to see the Lion King over Labor Day weekend. He was very excited by this, and then wished me a good Labor Day weekend. This was our first weekend holiday in the hospital! Weekends in the hospital are very isolating, but holiday weekends are like ghost towns! Get the picture? It only got worse! On one occasion, he even told me that he longed for the days when parents did not question doctors (my mom and Mattie's art therapist overheard this one!!!), or how about the time when he gave Mattie a placebo of saline solution because he did not believe he was really in pain. So he denied him pain meds. Only to find out minutes later that pain meds were absolutely necessary because Mattie was actually in pain (Mattie's nurse was LIVID)! Are these not bad enough? Then how about the time when he and a PICU nurse isolated me outside in the PICU hallway from Mattie because they believed that I was the reason Mattie claimed to be in pain. They believed that Mattie acted up around me for attention and without my presence would not have any issues with pain! Of course they were WRONG and if it weren't for Tricia (our HEM/ONC nurse extraordinaire), there would have been ONE dead PICU nurse and doctor in the hallway that day. The lesson learned is that parents need to advocate to switch providers and find oncologists who are better personality fits for their family. This is a very important part of the treatment process. It is not just a nicety, it part of the therapeutic alliance. If we couldn't connect, engage, and dialogue with the doctor in a meaningful manner about Mattie's care, then it was hard for us to trust him about medical decisions. 

July 21, 2014

Monday, July 21, 2014

Monday, July 21, 2014

Tonight's picture was taken on August 5, 2014. This is a day I will never forget. On this day we learned that Mattie's cancer case was terminal. As we were waiting to for his CT scan appointment, we went out to the hospital rose garden. A place, I spent a lot of time, whenever I got to escape the pediatric floor for a few minutes to get fresh air. Which was rare. Near the garden was this elephant statue, which was covered in tiles and other ceramic art work. Mattie posed by the elephant because his nurse Kathleen created a tile for the elephant than featured a message to Mattie on it! She called Mattie her "monkey boy!" Mainly because Mattie's left leg was nicknamed 'Curious George.' The left leg was the only leg which wasn't operated on and therefore, George moved around almost like an arm. The left foot, practically was hand like, so skilled that Mattie could pick up, open, and do lots of things with his foot. In many ways, this photo was the last happy moment before we learned about his terminal status. 


Quote of the day: In matters of truth and justice, there is no difference between large and small problems, for issues concerning the treatment of people are all the same. Albert Einstein


I continue to be glued to my computer and am writing a book chapter! The parts I have researched and written already are currently being edited by the two researchers and clinicians who are working on the chapter with me. They are giving me comments and revisions which I have to address, but until they all come in, I am working on integrating Mattie's case into the book chapter. As such, I have introduced the reader to Mattie's overall case and then within each section am giving actual case examples that highlight the issues I am covering in the research. This may sound easy to do, but it truly isn't. If I had a lot of time, I probably could comb through the blog and find out exactly when each incident in Mattie's cancer journey happened and cite exactly how I wrote up the event when it happened. But I don't have that time. Instead, I have to rely on my mental data bank. Which fortunately is quite good. Thankfully I have had to present about Mattie's case at multiple conferences, medical grand rounds, and I write about Mattie so often. This keeps Mattie, our experience, and the lessons learned VERY fresh in my mind. As I sit and write this chapter, there are SO many examples I wish to highlight in this book chapter. But I am picking the most salient ones. 

Tonight's picture, captures one of the salient examples I wrote about today in the section of the chapter about patient advocacy. There was a research study conducted on patient advocacy that assessed what forms of advocacy parents use when caring for their children. One form is called PERSISTING. That makes perfect sense to me and it was a strategy Peter and I used ALL the time, I just never put a name to it. If it wasn't for our persistence, Mattie would not have been diagnosed as terminal on August 5, 2009.  

After Mattie completed 9 months of chemotherapy, three limb salvaging surgeries, and a sternotomy to remove 9 lung tumors, we thought his treatment was behind us. At that point, we focused on his rehabilitation and despite Mattie's weakened condition he participated in an intensive course of physical therapy. With the goal of trying to retrain him to walk, so he could potentially return to school in the fall of 2009. However, Mattie kept complaining of pain, he was unable to eat and couldn't even drink water. He survived on IV fluids alone! I kept bringing this to the attention of his doctors. Instead of listening to me, they felt that his not eating was a side effect of the chemotherapy, or his manipulation for control, or worse his addiction to pain medication. None of these explanations made sense to me and over time, as I saw Mattie not getting any better, I insisted that he be scanned. It was through a sonogram, followed by a CT scan that we learned Mattie's cancer spread to his liver and his lungs. Basically that his case was terminal. The lesson learned was that doctors have to listen to their patients and their family members. Sometimes cancer doesn't follow a road map, a scientific plan! Despite being off of chemotherapy for six weeks, and though it seemed impossible to them that his cancer could come back SO SOON, it did! With a  vengeance. Meanwhile Mattie was suffering in enormous pain. I also wrote about the fact that before suggesting to parents that they are to blame and are being manipulated by their child, that doctors may want to rule out all physical possibilities for the symptoms mainly because what doctors say to parents can have devastating and life long consequences. 

July 20, 2014

Sunday, July 20, 2014

Sunday, July 20, 2014

Tonight's picture was taken in July of 2008. We took Mattie to the DC Aquatic Gardens that day. The reason I decided to repost this photo tonight (since I believe I posted it recently on the blog) is because Peter and I visited the Gardens today. Mattie loved the Aquatic Gardens and for good reason. They are a very unique place to visit, especially in July when the Lotus flowers are in bloom! Today when we visited, I remembered this exact photo and Mattie walking through the Gardens with us. 


Quote of the day: The lotus is the most beautiful flower, whose petals open one by one. But it will only grow in the mud. In order to grow and gain wisdom, first you must have the mud --- the obstacles of life and its suffering. ... The mud speaks of the common ground that humans share, no matter what our stations in life. ... Whether we have it all or we have nothing, we are all faced with the same obstacles: sadness, loss, illness, dying and death. If we are to strive as human beings to gain more wisdom, more kindness and more compassion, we must have the intention to grow as a lotus and open each petal one by one. ~ Goldie Hawn

Usually when we drive into the parking lot of the DC Aquatic Gardens it is EMPTY! Mainly because the park is off the beaten track in DC. But today, WOW, the parking lot was FULL. We practically got the last parking space. That is because this weekend was the yearly Lotus Festival at the park. Thankfully the event was yesterday and we missed the music, kids activities, and other fanfare. This would have been something we would have craved if Mattie were alive, now this is something we migrate away from. 

Thankfully despite the crowds of people, everyone was quiet and was there to enjoy the serenity of seeing the lotus flowers and all their beauty. The lotus is native to Tropical Asia and Queensland, Australia, and it is commonly cultivated in water gardens. It is also the national flower of India and VietnamIn the classical written and oral literature of many Asian cultures the lotus is present in figurative form, representing elegance, beauty, perfection, purity and grace. The flowers, seeds, young leaves, and roots are all edible. In Asia, the petals are sometimes used for garnish, while the large leaves are used as a wrap for food. So besides its beauty, it is also a very versatile plant. Peter snapped some glorious photos today! I will share a few with you because I don't think my words can do these sightings justice.

Lotus flowers in their glory! Some are more whitish and some are a deeper pink. 











It is fields and fields of lotus flowers in the heart of DC. The irony is if you come a few weeks from now to the DC Aquatic gardens you WON'T see this! The flowers will be all gone. All you will see are the green leaves. It is like a special gift that you wait for all year long to be unwrapped and that is why many people came out this weekend for the viewing. It is breathtaking and worth the trip. 












The incredible color closeup! A gift that only nature could produce!




















Peter caught for me the life cycle of the Lotus. It starts as a bud. Then the bud opens up into a flower. Once the flower blooms and the bloom dies off, what is left is this pod like thing. The pod looks like a shower head to me. In this case the shower head is green. Do you see it!? You may recall seeing these shower heads in flower arrangements. Sometimes they are used when they turn brown. 











In addition to incredible lotus flowers, the Gardens have water lilies. Claude Monet would have loved this setting. In fact, there were painters with their canvases set up right by the ponds and lilies today! No surprise given the incredible setting and subject matter at hand. It is an impressionists dream!














I am not sure I have ever seen purple
water lilies!



















In honor of Mattie, Peter captured a series of cuties today. This tiny turtle was the first sighting. 


















This dragonfly was the second sighting. It almost seems like this dragonfly is staring at Peter with its beady eyes. 








The third sighting which I did not even see was Mr. Frog! Peter found him hiding! Mattie would have gotten a huge kick out of this frog. I love how the frog was staring at Peter. Apparently he was staring at me too, but it was only when I got home and looked at the photo, did I actually see him!




I leave you tonight with this spectacular sight! If you live in the DC area, it is worth a trip to the Aquatic Gardens while these beauties are still in bloom!