Mattie Miracle 2021 Walk was a $125,000 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: 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

July 22, 2017

Saturday, July 22, 2017

Saturday, July 22, 2017

Tonight's picture was taken in July of 2008. This was really like a week or so before Mattie was diagnosed with cancer. He was very excited about his loose tooth. In fact Mattie had a whole process when he lost a tooth. He would put his tooth in a fairy tooth box I bought for him. He would then sit down with me, and together we would write a note to the tooth fairy. The note was to help the tooth fairy decide what to leave him. Mattie never requested money. He would instead request all sorts of things like a hotwheels car to even a necklace made out of pasta (go figure!). Both the tooth box and note would go under his pillow, and low and behold Mattie was always pleasantly surprised when he woke up the next day. That fairy ALWAYS got it right. 

Quote of the day: Remember, if you ever need a helping hand, it's at the end of your arm, as you get older, remember you have another hand: The first is to help yourself, the second is to help others. ~ Audrey Hepburn

We visited Ash Lawn Highland today. The official residence of fifth President James Monroe and his wife, Elizabeth Kortright Monroe, from 1799 to 1823.

James Monroe was a tireless public servant who fought and bled in the American Revolution, successfully negotiated the Louisiana Purchase, worked behind the scenes to push the Missouri Compromise through Congress, secured our nation’s borders, and issued our first hemisphere-wide foreign policy statement: the Monroe Doctrine. 

I asked the tour guide why the property is called Ash Lawn Highland. It got its name from the Ash trees that line the property, as you can see from this photo. 
Mattie would have been pleased by this lizard sighting. This lizard practically came right up to Peter's foot!
Plantations were large money-making enterprises, and ideally produced most goods that were needed on site as well as a surplus of crops and other products for sale. Initially, Monroe found that only a small portion of Highland was cultivated. In 1798, however, he estimated that the plantation could produce 20,000 pounds of tobacco. To increase production, he –like his friend and neighbor Thomas Jefferson—experimented with a variety of agricultural techniques. Monroe successfully planted cover crops, and plowed plaster of paris, or gypsum, into the soil, techniques of boosting soil productivity. Eventually Monroe replaced tobacco with grain crops, which were less draining on the soil. The plantation had both a gristmill and a sawmill, so had the capacity to grind the plantation’s corn and wheat, and process timber from Highland’s 2,000 wooded acres. The blacksmith who shod horses and hammered ironware was likely an enslaved man who lived on the plantation. Other enslaved workers were kept busy spinning and weaving wool and flax, one of the service yard’s most important activities. Since foreign cloth was extremely costly, Monroe imported Spanish Merino sheep to Highland, where he cross-bred them with his domestic animals.

This magnificent white oak, still standing from Monroe’s day, is sometimes called the “witness tree.” It is twenty feet in circumference. 
Now here is the deceptive part of this visit. One thinks one would be seeing the actual Monroe house. However, the house you see on the property was built in the 1870s, long after Monroe lived on this property. They know the dating of this house, through studying core samples of the wood. 

They have been doing some excavation and found remnants of a foundation in front of this house (a house that was destroyed in a fire). Most likely the foundation of Monroe's house. The plan is to relocate this yellow house somewhere else on the property and start digging and exploring the old foundation to learn more about Monroe's actual home. 

So we took this photo because you see three different structures. The farthest on the left is a white house, known as a guest house. It is original to Monroe's era, and Monroe had guests staying in this house. 

The Monroe's lived on this property from 1799 to 1828. So this white structure is original to the property. Then you will see a white intermediary portion of the house. That was built after the Monroe's left the property. Most likely to expand the guest house. While the yellow house was built in the 1870s. So what we saw today was the "white" presidential guest house—sheltering visitors during Monroe’s two-term presidency from 1817 to 1825. Within the house are original pieces owned by the Monroe's. But it was a deceptive tour because they tried to set up the guest house to model how the Monroe's may have had their original house set up. I found that very confusing, but it did give you a feeling for what construction was like in the 1800's as well as Monroe's love for French decor. 

Highland’s slave quarters remained intact until the 1920s. A reproduction was rebuilt in the 1980s based on a 1908 photograph. Today, visitors can walk through the recreated quarters and see demonstrations of chores that were part of slaves’ daily lives at Highland.
The gardens featured many statues of James Monroe. 

Tonight we were meeting up with friends who live in Charlottesville, and also lost a child to cancer. We will be visiting the Clifton Inn's restaurant. It is a lovely experience to visit an Inn and dine in a more historic setting. 

July 21, 2017

Friday, July 21, 2017

Friday, July 21, 2017

Tonight's picture was taken in July of 2008, before Mattie was diagnosed with cancer. As was typical, we went for a walk on Roosevelt Island that weekend. If you look carefully you will notice Mattie picked up a stick and was carrying it along his journey. Not atypical for Mattie. He always liked to collect something on his walks and bring it home. Little did we know in this picture how our lives were going to change just a few weeks later.... as Mattie was diagnosed with cancer on July 23. 

Quote of the day: Successful people are always looking for opportunities to help others. Unsuccessful people are always asking, 'What's in it for me?' ~ Brian Tracy

We drove to Charlottesville today. It is truly a very peaceful and less trafficked stretch of road to drive. As it is only about 2.5 hours away from Washington, DC. In comparison to driving in the Northeast, this was a breeze. Look at the sights along the way! Plenty of greenery, less cars, people, and congestion!
We passed several wineries along the way, as this is part of Virginia's Monticello Wine Trail. With about 33 vineyards near the Charlottesville area. This wine trail is considered the "birthplace of American wine," because it was inspired by Thomas Jefferson’s vision of grape growing and wine making.

Can you see all the grape vines growing in the distance?
On our drive, we stopped at Early Mountain Winery. My friend, Annie, who lives in Charlottesville told us about this vineyard, as a lovely place to stop for lunch. Was she right!!! 
This was the outdoor portion of the restaurant. People came to dine, drink wine, and take in the rolling hills and greenery. 
 Our table view!
The outdoor patio was surrounded by flowers, and the honey bees truly loved these flowers. 
This is Early Mountain's vineyard, and they make and bottle their wine on-site. 
We arrived at the Boar's Head Inn this afternoon. It is as hot as blazes outside. I think you could fry an egg on the sidewalk kind of heat. But the Inn is quite charming, traditional, and has a real old world feeling to it. 
The interior of the rooms. 
We are actually staying in this building, behind the Crape Myrtles. 
Our room has a balcony, and we were surprised by receiving these wonderful flowers as we entered our room. My friend Annie, lives close by, and dropped off this arrangement from her garden. 

I met Annie in 2011, as we were both advocating for childhood cancer on Capitol Hill. She lost her daughter to cancer in 2010. We got along with each other as soon as we met. When Annie comes to DC, she visits us, and when we come to Charlottesville, we visit her. 
This is the view from the balcony. 
The property around the Inn is lovely and despite the heat, I did walk around it today. 

Tonight we are going to the Ivy Inn for dinner. This is a family owned restaurant that I researched and found. The Ivy Inn is located one mile from the University of Virginia and was once part of a larger estate named “Faulkner House“ after  William Faulkner, a Southern aristocrat and distinguished University “writer in residence.”  In 1815, a fire destroyed the original Inn, which was built in the early 1700’s.  A year later, Jesse Pittman Lewis rebuilt the estate, adding several outbuildings, including the present structure, which now houses the Ivy Inn Restaurant. The kitchen, located in the back of the house, was formerly a tollhouse, where weary travelers rested from their journeys between Richmond and Staunton. 

July 20, 2017

Thursday, July 20, 2017

Thursday, July 20, 2017

Tonight's picture was taken in July of 2009. About a month before we learned that Mattie's condition was terminal. Rather ironic how one's life can change in a few weeks time. This photo wasn't taken by me, but by one of Mattie's art therapists. I am in the background behind Mattie. However, this was a fascinating photo because a lot was happening around the art table in clinic. The man in yellow is Bob Weiman (Mattie's head of the lower school) or as so many of us call him, "the Magic Man." Bob came to visit Mattie frequently in the Hospital and taught Mattie numerous magic tricks. These lessons were SO IMPORTANT for Mattie. Almost therapeutic, because Mattie was limited physically from doing other activities. However, despite having both arms operated on, Mattie had the manual dexterity to learn and perform the tricks. Next to Mattie in blue was his friend Maya. Maya was Mattie's age, and was the only same aged child Mattie ever became friends with at the Hospital. I attribute this to the fact that they were both very bright and had a witty personality. Talking to me in the background was Jocelyn. You can't really see her, but she was there. Jocelyn was a young adult battling osteosarcoma and became a real pal to Mattie. When Jocelyn died, "the Magic Man" was impacted too, because Bob had interacted numerous times with Jocelyn. Hard to imagine that two young people are now gone from this photo. 

Quote of the day: Out of suffering have emerged the strongest souls; the most massive characters are seared with scars. Kahlil Gibran

I was talking to a friend today about another child we know who is being treated for osteosarcoma. In fact, this child had his first limb salvaging surgery yesterday. What stunned me was she said the child was admitted to a regular hospital floor post-surgery and was even up and eating chicken soup. Literally I practically LOST IT!

Certainly there is Vicki the rational person and then there is Vicki, who will always be Mattie's mom. Naturally the Mattie's mom instinct kicked into gear when hearing this! I was truly perplexed how this child could be doing so well and eating! The photo I am showing you was Mattie two days after his first limb salvaging surgery. This was the FIRST time out of bed and his room. It took myself, all the child life interns, and Mattie's art therapist to assist with this event. An event was indeed the right terminology. 

I can get upset with myself after my reactions, because in all reality, shouldn't I be HAPPY that this other child I heard about today is doing SO WELL? Shouldn't I be thrilled by this news?! Well the answer from a human perspective, is OF COURSE I am happy for the other child, but this is the challenge of an issue being so personal. It is hard at times to separate the help I provide as a Foundation leader from the closeness I feel about the disease. 

I can NEVER forget Mattie's ordeal. Fortunately I had the where with all back then, despite being SO STRESSED out, to write Mattie's blog every day and report on the process and how Mattie and all three of us were doing. Which is why tonight, I turned to the blog, specifically to October 21, 2008, the first day after Mattie's FIRST limb salvaging surgery. Take a look at what the first post-op day looked like for us. After you read below, you may understand why I am SO perplexed over the news I heard today.


October 21, 2008 (1 day after surgery)--- lifted from the blog:

It is around 2am, and we are not getting much sleep here. Mattie is running an 100.8 degree fever, and they have decided to run a culture of his blood to rule out other infections. In addition, Mattie is very uncomfortable and is now on Fentenol and Versed in addition to the continuous perineural drip. There is something about this hour of the morning that makes things seem more pronounced, scary, and daunting. Mattie told me that it feels like we are killing him. But we explained that all this pain was very normal, and it is a matter of finding the right balance of pain medication. Everyone is trying very hard to make Mattie comfortable, and we feel supported as we plow through the night. However, Mattie is not enjoying the catheter much nor does he like the fact that he has two IV lines in his left arm. As he becomes more agitated, he wants to move his body. Which we are encouraging him not to do right now. But he held our hands tonight with his right hand, which seems to be swollen, but functioning quite well considering the major surgery he had. I sit here worried about this fever, and of course wondering how we are going to manage the pain, since he complains every 15 minutes of pain. Mattie is bandaged up on the right side, and has a drainage tube and the perineural coming out of the bandage. On the left arm he has two IVs, and he also has a catheter to collect urine. So movement is not an easy process for him, and as we move into Tuesday morning, I wonder how on earth he will accept his current state, and better yet, how will we help him when we are both wiped out? All great questions, and hopefully I will be able to give you the answers as the day unfolds.

It is around 3:45am, and we are still struggling at managing Mattie's pain. They have now ordered a continuous IV drip of fentenol, in hopes of helping Mattie. When I asked him to describe his pain on a scale of 1 to 5, with 5 being the highest, he selected 5. He is still running a fever as well.

It is 12:30pm, I will try to recap the morning. At 5:30am, they finally got the continuous drip of Fentenol going. It was at that point where we got some peace (why Bob's suggestion for a PCA wasn't done is beyond me, but again this is what happens when you are in a system, and you have to follow certain protocols or chains of command). But at 8:30am, Mattie was in pain again, and he is good at describing his pain, and he never yells or screams. Well being hoarse from being intubated during surgery may impact this lack of screaming, but he is excellent telling us when he needs pain meds administered. Around 11am, the PICU doctors rounded. What does this mean? Well it is literally like a pow pow outside your room door. In attendance is the PICU attending, our HEM/ONC attending, residents, nurses, and our nutritionist, Ellen. Linda stayed with Mattie while we attended this meeting right outside our door. Being in the mental health field I am very cognizant of confidentiality and HIPAA issues. I am always in amazement how such a round, discussing vital patient information, can take place right in the middle of the hallway. But I digress. So Peter and I listened to what the doctors were reporting. Frankly, Peter is a lot better at this than I am. I am far from dispassionate when it comes to Mattie. If I were listening to the report on someone else, then I am sure this factoid report, with NO emotion, would have been just fine. But it was FAR from fine as a mother of the patient. I was so insensed by the whole meeting and how it was conducted, that I told Peter right in front of the doctor that I did not find this meeting productive or helpful to me, and I left. I am in no way qualified to tell a doctor with years of experience how to manage or run his team or staff. But I feel I am very qualified to express how his cold demeanor impacts me, a family member. Any case after the round, Julie (Mattie's nurse) came in to remove Mattie's catheter and Arterial line (which looks like an IV in his left wrist). The arterial line was internally taking Mattie's blood pressure every 10 minutes or so. It was a blessing to get this line taken out, because Mattie's left hand was basically immobilized on a plank or splint. Currently, Mattie is sleeping, but it is our hopes of getting him out of bed today. He needs to move around, because of his swallow breathing, his lungs are not getting enough oxygen. The aftermath of surgery isn't a pretty picture. But I have wonderful news to report. Bob was very humble yesterday, and he did not tell me this per se, but Mattie's attending oncologist today told us how important it was for Bob to remove Mattie's tumorous bone intact. In fact, when they see Bob's surgerical pictures, they are all in amazement. In amazement because Bob's work is clean, orderly, neat, and appears to have really cleaned out the area of anything that looks cancerous. To me that was such excellent news, and you need excellent news like this, in order to get through the hours of watching your child immobile, in pain, and with tubes coming out of him in every direction.

It is now 4:20pm and we just met with Dr. Gonzales. We shared with Dr. Gonzales our concerns about Mattie not being on a PCA (patient controlled anagelsia). Some of you may recall the coordinated care meeting we had with Dr. Bob Henshaw and several other professionals prior to Mattie's surgery last Wednesday. Within that meeting, Bob discussed with us a PCA. It was our understanding we were going to have one for Mattie right after the surgery, to help manage the pain. However, the anesthesiologist assessed that there could be a safety issue if Mattie obtained a PCA. The safety issue was that Peter or I would push the pain pump for Mattie, rather than Mattie doing it for himself. What became a simple dialogue turned into a decision that I believe wasn't in Mattie's best interest. Mattie did not receive access to continual narcotic pain medication until 5:30am today. So we told Dr. Gonzales about our expectations and what we felt transpired in the pre-op area. Dr. Gonzales then spoke to the anesthesiologist and advocated on our behalf. The beauty of the PCA is Mattie can dictate when to push the pump and receive medication when he is in pain. Therefore, he will only get this narcotic if and when he feels he has pain, and it won't be floating in his system 24 hours a day. It will be used only when he needs it. I am happy with the way this was resolved and I am hoping that Peter and I can help Mattie learn this new system.

It is now 10:30pm, and Peter and I are thoroughly worn out. How Peter is going to work tomorrow is beyond my comprehension. We had virtually NO sleep last night (Monday), and who knows what tonight holds. Peter and I have been struggling all day with pain management issues. Dr. Bob Henshaw (Mattie's surgeon) came to visit Mattie this evening and felt that Mattie looked overly sedated and sleepy. Of course this is wonderful from the pain management standpoint, however, from a recovery stand point it isn't so great. Mattie is too tired to talk, attempt to eat, move, and so forth. Peter and I are learning that there are different camps of thinking about how pain management is administered. By tonight, our patience was frayed and we finally spoke with an anesthesiologist resident who worked hard at coordinating Mattie's team regarding the administration of pain meds. Folks from Georgetown came up to talk with us about the dangers of upping the dosage of Mattie's perineural, contrary to Bob's advice. Peter and I are tired, confused, and feel that these folks need to coordinate Mattie's pain care better so they are on the same page, and we are not left to understand this at 10:30pm. I think we currently have a plan, but right now Peter and I are sitting on the edge because Mattie's blood pressure has shot through the roof. We are trying to figure out what is causing this high blood pressure.

July 19, 2017

Wednesday, July 19, 2017

Wednesday, July 19, 2017

Tonight's picture was taken on July 24, 2008, the day after Mattie was diagnosed with cancer! When you look at that face, to me he didn't look like he had cancer. Mattie had rosy cheeks and other than arm pain, the rest of him looked fine. Looks are deceiving. That day we brought Mattie into the outpatient clinic at the hospital. Alongside his art therapists, he built the boat you see floating in our tub out of a box. Mattie loved boxes, and his therapists learned that lesson quickly. Naturally the therapists had just met Mattie, but Mattie loved to create, and within a few weeks, the art therapists became his close friends. 

Quote of the day: Life belongs to the living, and he who lives must be prepared for changes. Johann Wolfgang von Goethe 

I went to the hospital today to push around our Mattie Miracle snack/item cart through the three pediatric units. I try to do this once a month for many reasons. First and foremost, I want to see the cart in motion and interact with the families in the units. Second, I want to see what items are popular and needed. 

Some parents who have lost a child to cancer refuse to return to the hospital, much less ever visit the floor their child was treated on. For years now, I have been visiting the 5th floor of the hospital without a problem. The memories of Mattie's presence on that floor never bothered me and when you live in a place day in and day out for over a year, which was what we did when Mattie was battling cancer, it becomes NORMAL to you. So the physical space doesn't bother me and seeing the patient rooms is also okay. When I push the snack cart around through the units, I am naturally going into rooms, rooms Mattie once occupied. Rooms which hold a lot of memories, not to mention room #10 in the PICU, where Mattie died. This is a room I will never forget.  

Yet I have noticed for the past few visits after I push the cart I am agitated. Why? Well I had to think about that today. It isn't like the space bothers me, nor seeing sick kids is a problem (doesn't that sound awful, that I should be okay with this!). I think I can say this, because with Mattie I saw it all, so not much is going to shock me, or even wear me down. But what does wear me down is seeing a place change. As Goethe's quote points out, change is inevitable and part of living. I totally agree, but some changes are harder to swallow and accept. When I see most of the staff who used to work with Mattie and me gone, it signals to me that the institutional knowledge that housed Mattie's battle, that understood what Mattie was like as a child, and knew about our struggles as a family is all gone. In a way, when I push the cart now, I am just some lady visiting the hospital, pushing an orange cart. I am no longer Mattie's mom to the staff I see. So all of this greatly saddens me, because it is the people who make up an institution, not the walls and facility. It almost feels like Mattie never existed in these hospital units because I have few people left to remember those moments and to keep his memory alive. 

Sure you could say Mattie has been dead for almost 8 years now. But in my opinion that is just a number. It doesn't mean that reflecting and sharing memories is any less important. In fact, I would almost say it is MORE important. So the question is, what to do with these feelings? How to manage such changes? After all, I need to answer both questions, if I am going to be able to visit the hospital monthly. These are today's feelings, but I would say each day I am faced with the same question... how am I going to manage__________ (fill in the blank). Losing a child can paralyze you as a parent so much so, that you are constantly analyzing, re-evaluating, and trying to figure out your place in the world. 

July 18, 2017

Tuesday, July 18, 2017

Tuesday, July 18, 2017 -- Mattie died 409 weeks ago today. 

Tonight's picture was taken in September of 2002. Mattie was five months old and as you can see was now sitting in a high chair to eat. The month before, Mattie wanted nothing to do with the chair. A month later he tolerated the chair but preferred it without the table! It was a gradual process with Mattie, but as I learned it was important to do things on Mattie's time! It was what worked and as a parent I did what worked for Mattie, not what worked for me or some pediatric theory and timeline. 

Quote of the day: The truest help we can render an afflicted man is not to take his burden from him, but to call out his best energy, that he may be able to bear the burden. Phillips Brooks

I had the opportunity to have lunch today with my friend Junko.  This is a photo of Junko from our 2015 Walk & Family Festival. Junko works with my lifetime friend, Karen, at coordinating our volunteers on the day of the Walk.  Since we have over 60 volunteers this can be a challenge. 

But how did I meet Junko? Well Junko and I met the summer of 2007, right before Mattie was going to enter kindergarten. I decided to enroll Mattie in a part time summer camp that year at his new school, in order to help him adjust to kindergarten in the Fall. I figured if he was on the campus and interacting with some of the same teachers he would see in the Fall, it would help with the transition. Keep in mind Mattie LOVED his preschool and did not want to go to a new school.

Junko's son, Kazu, was enrolled in the same summer camp as Mattie, as like me, she wanted to help her son adjust to this new campus environment. On the first day of summer camp, I literally walked Mattie right into the building. Yes I was the over anxious and protective parent and wanted to know where he was going to be and who was going to be leading his camp session. Mattie was shy and really did not want me to leave and I would say the first day or so, camp was VERY difficult for him. However, by the third day, as I marched Mattie into the classroom, I looked around and assessed the other kids in the room. It was a camp geared for 5-7 year olds and there had to be at least 20-25 kids in the gym running around (even I found it overwhelming). Many of these kids knew one another already, so I could see Mattie was the odd kid out. However, I saw a kid standing alone and not interacting with anyone. So I went up to him. I asked him what his name was and whether he would like to play with Mattie. He told me his name was Kazu and wasn't sure what to do next, but Mattie moved along side Kazu, and I figured perhaps they would stay together. There is strength in pairs.  

This camp was two weeks long. By the second week, while picking Mattie up, I had a mom chasing after me in the parking lot. Who was it? But Junko! She wanted to track me down because Kazu told her what I did in the classroom, and she was thrilled that her son was now paired up with Mattie. She said this made the summer camp experience for her son, and therefore for her. So literally our friendship started over Mattie! Mattie connected me with many wonderful people. 

When Mattie was diagnosed with cancer, Junko came at least once a month to visit us in the hospital. Unlike all our other visitors, Junko came to truly meet my ever growing needs. Naturally she brought food and toys for Mattie, but she coordinated it with child life so that we could have the lunch she brought for both of us in the family lounge and then she would give me a neck and back massage. Mean while, I knew Mattie was well taken care of while I was with Junko, since he loved Linda, his child life specialist. These many acts of kindness will never be forgotten, and to this day, Junko volunteers her time for the Foundation. 

Junko is a wonderful example of the amazing support community that we had while Mattie was battling cancer. Something that will never be forgotten. In fact, once Mattie died and this community dwindled, it was very hard to accept, adjust to, and come to turns with. The only thing I can equate this feeling to is being a pop star in Hollywood. For a moment in time you are on everyone's mind and in all conversations. Then as often happens, the fade dies down, and therefore so does that person's stardom and fame. In a way, this was what it felt like. When Mattie was battling cancer, everyone wanted to be a part of our lives and to help. Literally people tuned into the blog daily, with hundreds of visits per day. On surgery days, the visits were in the thousands. Whatever item we needed, we got five of them. It was truly incredible, to see people unite over Mattie. Yet after Mattie died, things began to change. There was no longer a little person to fight for to try to achieve a happy ending. All that was left was two broken parents, with a lifetime of grief ahead of them. Some people, even those closest to me (for 15+ years), abandoned ship. I live with both the beauty and the horror associated with childhood cancer, and as you can see I AM NOT TALKING ABOUT THE MEDICINE. I am reflecting on the social and emotional issues that have forever transformed my life. 

July 17, 2017

Monday, July 17, 2017

Monday, July 17, 2017

Tonight's picture was taken in July of 2002. Mattie was three months old. It was recommended that babies at that age have back and tummy time. So I went with this theory for a while and then by a certain point, I said ENOUGH! Mattie truly disliked being on his back or stomach. He couldn't last in either position for more than a few minutes. He would start crying and seemed totally uncomfortable. Which may explain why he slept on my shoulder in an upright position for practically the first four months of his life. In any case what I learned about raising Mattie early on was that theories and bench marks were just that.... hypotheticals. Some children develop following their one time frame, and nothing is wrong with them. Yet trying to fit a child into a developmental mold and time frame only frustrates the child and the parent. 

Quote of the day: But even with the inspiration of others, it's understandable that we sometimes think the world's problems are so big that we can do little to help. On our own, we cannot end wars or wipe out injustice, but the cumulative impact of thousands of small acts of goodness can be bigger than we imagine. ~ Queen Elizabeth II

Yesterday I received an email from a friend I knew in graduate school, who now lives in North Carolina. She is in town, while her middle school aged son attends a conference. She asked if I had time to meet. Denise has followed our story with Mattie, which is good, because I don't like starting from ground zero with people.

I met Denise at Hank's Oyster Bar in Dupont Circle. How did I pick this restaurant? Easily because the owner of the restaurant supports Mattie Miracle. There is a Hank's Oyster Bar in Alexandria, VA as well, which is how I first became familiar with this restaurant group. 

Despite the heat (91 degrees with high humidity), I decided to walk from our home in Foggy Bottom to Dupont Circle. The walk took me 45 minutes each way. If I did not walk Sunny each day, I most likely wouldn't have the stamina for this, but with Sunny you walk in rain or shine! But I do think you need endurance to manage our DC heat. 

Any case while walking through the Dupont Circle neighborhood, I snapped some photos of flowers and buildings. 
This is the memorial in the middle of Dupont Circle. Being on foot I was actually able to read the statement carved into the stone around the memorial. Originally in the 1800s there used to be a statute here, but it was replaced by congress with this fountain. It honors Rear Admiral Samuel Francis 
Du Pont, a prominent American naval officer and member of the Du Pont family. 
 Glorious color no?
Hydrangeas bursting out to greet me!

July 16, 2017

Sunday, July 16, 2017

Sunday, July 16, 2017

Tonight's picture was taken in August of 2002. Mattie was four months old and was starting to eat rice cereal. We had a high chair, but Mattie did not like it initially. So his first food experiences were on our couch. Propped up with pillows! One thing we learned quickly and that was Mattie LOVED rice cereal!

Quote of the day: Great opportunities to help others seldom come, but small ones surround us every day.Sally Koch

It was in the 90s today and with high humidity. Walking outside and in the sunshine was actually debilitating. I typically like the summer, but walking a dog in it is actually more complicated than the winter. I never thought I would be saying this!!!

We took Sunny for a walk today on the National Mall. Sunny loves the Mall, because it is there that he chases squirrels. 
Peter and Sunny scouting out a squirrel!
In hot pursuit, running after a squirrel!
As we walked back home, we went through one of local gardens. 

However, once we got home, we introduced Sunny to the air conditioning vent on the floor. As smart as he is, he never thought to walk behind the furniture to sit on the grate before. But today as we coaxed him there, he finally sat down to get cool!

Meanwhile, this evening, as I was petting Sunny, I felt a bump on his neck. So I pushed aside his fur. To me it looked like another fatty deposit, but when Peter saw it, he pronounced it as a dead tick. I gave him my tweezers, and look what he pulled out! Sunny takes flea, tick, and heart worm preventatives monthly! This tick died and wasn't able to burrow into Sunny because he is on preventatives. The thing probably tried biting Sunny, but was poisoned thanks to NextGuard (Sunny's monthly flea and tick med)! 

Since we rescued Sunny and he was already heart worm positive, I learned the hard way the ramifications that can ensue if you don't give your dog its preventatives. Thankfully there is treatment for heart worm, though it is tedious and can be life threatening since it is an arsenic based product. Thankfully after three infusions of this nasty stuff, Sunny is now heart worm free. But what this showed me is that monthly preventatives are vital to the overall health of a dog. Today proved this point once again!