2016 Walk & Family Festival --- an $85,000 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 6th 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!

December 8, 2016

Thursday, December 8, 2016

Thursday, December 8, 2016

Tonight's picture was taken in December of 2007. Mattie was visiting Peter's parents and brother in Boston. In my brother-in-law's driveway, they parked their boat. Mattie and his cousin Will, who is a year and a half older than Mattie, decided to hop aboard the boat and play. Since Mattie was into boats, I have no doubt that this was a happy moment for him. Mattie would tell anyone who would listen that he was saving his money to buy a boat. I don't mean a toy boat, but a REAL one!!!

Quote of the day: The most expected thing you can expect is what's unexpected. Dick Allen

Tonight's quote is so true. I had no idea that I would dealing with a clogged kitchen sink this afternoon, along with a leak under the sink. The clog is so significant and when you turn on the disposal, an incredible fountain occurs in the sink. Though my complex looked at the problem, they could only fix the leak under the sink. The clog is not on my end. The is something in the complex, perhaps on another floor that is blocked. They need to bring in special plumbers to address this issue. The problem however, is this isn't the first time this has happened to us. It happened a few years back! So until then we have no kitchen sink! 

Thankfully prior to this kitchen clog, I was able to make a Cream Cheese/Pesto/Sun Dried Tomato Torte. I am bringing it to my friend's Christmas party tonight. 

I'm tired of the unexpected, and some how it is the unexpected that is always deeply tiring and trying. 

December 7, 2016

Wednesday, December 7, 2016

Wednesday, December 7, 2016

Tonight's picture was taken in January of 2009. Mattie was home between treatments. As you can see he was visited by our resident jack russell terrier, JJ. JJ and Mattie practically grew up together. JJ loved playing and running around with Mattie, and when Mattie got sick, JJ truly tried to understand what was going on. It made no sense to him that Mattie could no longer walk and run. JJ's owner always promised us a puppy from JJ's litter when Mattie got older. But of course that wasn't meant to be. I do know that if Mattie were alive, he would have LOVED Sunny. 

Quote of the day: In order to be old and wise, you first have to be young and stupid. ~ Unknown

I went to Mattie's school today to give about a 35-40 minute presentation on Mattie and Mattie Miracle. If I had any doubt, today confirmed why I became a post-secondary educator! I much prefer teaching college and graduate students ANYDAY! Before me today were high schoolers! This is not a great age group to try to instill childhood cancer facts or even to have insights or empathy for children and teens who battle this disease daily. Developmentally they are of an age in which sickness only happens to the old. That they are inpermeable to sickness or death. 

I swear as I was talking to this group, all that ran in my head was...... Anyone, anyone, Bueller, Bueller!!! If you aren't a fan of the movie Ferris Bueller's Day Off, then you have no idea what I am talking about. I attached the clip of the the movie that I am referring to below! Basically there is a boring teacher droning on in the movie and the students are looking at him doubt founded.

Anyone, Anyone from Ferris Bueller's Day off:


In all my years of teaching, I never experienced a class like this today. Students were glazed over and some were dozing asleep. There could be many explanations for this.... the topic, the early morning hour of the class, or the fact that I was asking them to look and listen to a presentation. Most high school classes now involve VERY little didactic learning. There is more hands on assignments and more student directed teaching. Of course that doesn't work too well when coming in to talk about a topic they have NO EXPERIENCE with!!! Yet I had to keep my emotions in check because I was talking about a very personal topic and when there is NO interest or lack of respect for what I am talking about, this can produce frustrastion or anger. However, I acknowledged that feeling within myself, and moved on because I rationalized the complexities of dealing with a teenage population. However, there were NO reactions at all to my four minute remembrance video of Mattie. I think that is shocking, especially since I have shown this video to a host of classes of all ages, and always got some sort dialogue going.

I would like to say that this is a teenager issues, but I know when I was in high school, my biology teacher showed our class a video. It was a documentary about a family raising over 18 children, several who had profound disabilities. The video was called, Who are the Debolts (http://articles.latimes.com/2013/mar/12/local/la-me-dorothy-debolt-20130312).  That video was so touching to me that years later, I always thought about that family and would say a special prayer for the Debolts. So I don't want to sell all teenagers short, because I do believe some are capable.

Perhaps it was today's class, followed by my experience with candy delivery last week that set me off. Last week I did two candy deliveries with student volunteers from Mattie's school. The teacher driving along with me asked the students if they knew the significance of what they were doing with the candy. One student piped in and said YES..... that Mattie was a female student at the school, but knew nothing else. So I had to correct that notion right away. Not knowing who Mattie was, after their teachers have spoken about him year after year is noteworthy to me. But now it makes sense given my experiences in the classroom today.

After I presented, I then had the opportunity to go around to each student group in the class and hear their ideas for a 3D printing project. A project that is supposed to benefit Georgetown University Hospital. Clearly some of them have creative ideas about toys they could make that would be used for distraction purposes for children in the hospital, but I guess I await to see how these projects evolve. They have another month. 

From class, I then ran chores and also made these Christmas floral displays for my friend who is having a party tomorrow night. Frankly after my last few weeks with candy, classes, and so forth, I needed this creative project today. 

December 6, 2016

Tuesday, December 6, 2016

Tuesday, December 6, 2016 -- Mattie died 377 weeks ago today. 

Tonight's picture was taken in December of 2003. Mattie was about a year and a half old and as you can see he was sitting in the tub fully clothed and with no water. What do you think he was doing? You may think he was playing but that wasn't the reason he was in the tub. 

Until Mattie learned to talk (which happened maybe at 2.5 years...he was a late talker) he would have emotional tirades. They were much more volatile than a tantrum, and he had many of them in one day. They were exhausting, overwhelming, and frustrating to a new mom. It also involved biting! If the melt down was so significant, I would lift Mattie into the tub to distract and change his point of view. I never left the bathroom, but there was no talking involved. I would observe Mattie to make sure he wasn't hurting himself, and what always was the by-product of this tub time was Mattie would begin playing with all the toys around the tub. He would calm down on his own, and then we could talk about what happened. I learned that confining him to the tub somehow was like a reset button, because there wasn't other stimulus around and he could work out his frustration.  

Quote of the day: Do not be angry with the rain; it simply does not know how to fall upwards. Vladimir Nabokov

Today's weather was absolutely awful! I am NOT a rain person by any stretch of the imagination, but it is much worse when you are a dog owner and you have to walk outside in the rain! It was non-stop today and it never let up. Sunny and I managed to walk four miles today in this, and though he wasn't bothered in the least, I hated it. I still feel soaked to the bone. For Sunny it was business as usual, which is just fascinating to me. 

Tomorrow, I am heading back to Mattie's school to talk to the same technology class that I met with last Wednesday. Last Wednesday, I introduced the class to a parent and childhood cancer survivor. Tomorrow, I am scheduled to talk about Mattie, his cancer battle, and the Foundation. In addition, this class is working on a 3-D model of an MRI machine for MedStar Georgetown University Hospital. The class wants to talk about their project, where they are at with it, and to get my feedback. Having survived MULTIPLE MRIs with Mattie, I definitely know the extreme anxious reaction children can have to these scans. There is a lot to be said to preparing children for what is about to happen and also I can't emphasize this enough.... but a patient, calm, and child friendly tech can make all the difference in the world. So the 3D model has great potential for helping to explain the process to children before they endure a scan. 

This is Jey! Jey first met Mattie by a CT scan machine. Mattie was scared to death, hid under the machine and was crying hysterically! The other techs couldn't understand Mattie's reaction and some of them even labeled him as difficult. Jey was different. He observed Mattie and made an effort to get to know him. In fact, Jey became one of Mattie's fiercest advocates during his 14 months of treatment. Jey worked with Mattie's child life specialist and he even talked to the other techs to let them know their quick judgment of Mattie was wrong. Jey visited us on the pediatric floor with every hospital admission and on the day that Mattie died, he insisted that no one else could take his "little brother" (his nick name for Mattie) to the hospital morgue. Jey transported Mattie himself. 

It is Jey and so many of Mattie's caregivers who helped Peter and I see that cancer treatment is NOT just about the medicine. In fact, as the years go by since Mattie's death, the medicine goes out of my head, but how personnel treated Mattie and us.... is never forgotten. I believe one of the reasons we are financial donors to Georgetown University Hospital is because of the quality and character of the people working there and the way they connected with us. Certainly we needed the medicine, but it how you survive day to day with cancer that is the most complex! This is where psychosocial professionals and compassionate personnel come into play and make a true measurable difference. 

December 5, 2016

Monday, December 5, 2016

Monday, December 5, 2016

Tonight's picture was taken in February of 2009. Mattie was sitting on his hospital bed with Anna, his amazing physical therapist. It was Anna's birthday, so Mattie treated her to one of his cupcakes! 

Why did Mattie have cupcakes in his room? He had them because I would bake them for him between treatments. Cupcakes were a sweet incentive for Mattie to comply during his physical therapy sessions. By the winter of 2009, Mattie was depleted of energy, he was physically disabled (from his limb salvaging surgeries) and unable to walk or perform any activities of daily living independently. In addition, Mattie's high dosage chemotherapy left him with nausea, mouth sores, and a disinterest in eating. So he was losing a lot of weight. I know some families focus on good nutrition during cancer, but I did not espouse to this philosophy. My goal was to give Mattie anything he wanted to eat.... even cupcakes. 

Mattie loved cupcakes (non chocolate ones.... as he HATED chocolate) and would comply to use his walker and move his body for the chance to earn one. Moving was a total challenge for Mattie because he was in terrible pain, but we found distractions and incentives encouraged him at times out of his funk and into physical therapy. So the cupcake is very symbolic to me!

Quote of the day: What can I say? I've never met a cupcake I didn't want to get to know better. ~  Jasinda Wilder

Today was our annual check presentation at MedStar Georgetown University Hospital. In honor of this occasion, I always bake two dozen cupcakes. In memory of Mattie. I no longer have a reason to bake cupcakes, but this check presentation provides that for me. It also gives me the opportunity to share information about Mattie's life, the importance of cupcakes and why I am sharing them with others. 

Believe it or not we have been doing a check presentation event at Georgetown since 2011. Which means we are close to donating around $200,000 to the hospital. This doesn't include the thousands of dollars we provide through gifts in kind EVERY year! In 2011, we established the Mattie Miracle Child Life Program Fund at the Hospital. A fund that we truly believe in because Mattie, Peter, and I would never have made it through the horrors of Mattie's cancer battle without this very necessary psychosocial support. We saw it work for Mattie and wanted other children at the hospital to have access to these services. Last year, we started a new initiative.... adding a child life specialist on the weekends. Prior to our funding, children and families did not have access to a child life specialist on Saturdays and Sundays. I have been told by all medical staff that this addition makes things run smoother and families are happier. 

In the past we always had the check presentation event in the child life playroom in the pediatric units. This is the first year, we moved it! I asked for it to be moved because many of the nurses and other psychosocial professionals I had come to love, have left Georgetown. When staff you know leave a place your child was treated at, it feels like another loss. A loss because with them, they take the institutional knowledge that included Mattie. Now when I walk the hallways I meet many medical professionals but most of them do not know my story or Mattie's. So when our philanthropy contacts suggested meeting before the hospital board, I agreed. In fact, the hospital board said this was the first NON-PROFIT that has ever come to speak to them! Hard to believe! But I feel it is important for them to hear from someone who directly experienced their Hospital and continues to financially support it. There were 20 board members in front of us today, and they all eagerly listened to our story. Some were crying. 

Pictured from left to right:
Tricia Grusholt (Mattie's favorite nurse), Ann Henshaw (Mattie Miracle board member), Michael Donnelly (chief of pediatrics), Vicki, Jessica (Child Life Specialist), Peter, Michael Sachtleben (Hospital president), Katie (Child Life Specialist), and Jess (Child Life Specialist)

Mattie Miracle donated $30,000 today to MedStar Georgetown University Hospital's Child Life Program. We had the opportunity to talk to the executive management team of the Hospital and to meet Michael Sachtleben (Hospital President) and Dr. Michael Donnelly (Chief of Pediatrics). We shared Mattie's story, the Foundation's mission, and our commitment to psychosocially support children with cancer and their families.

This donation goes to fund a weekend child life specialist at the Hospital. Prior to the Foundation establishing this position, children and families did not have access to child life on the weekends. Child life is a necessary and vital part of comprehensive cancer care and we are thrilled to be able to provide this much needed coverage to thousands of children and families a year.

December 4, 2016

Sunday, December 4, 2016

Sunday, December 4, 2016

Tonight's picture was taken in December of 2008. Mattie was truly depleted, running a fever, and absolutely miserable. In the midst of that, Santa came into the clinic to visit with the children who couldn't attend the hospital party. Even if Mattie did not have a fever, he wouldn't have gone to the party anyway. With each successive month of treatment, Mattie chose isolation over socializing with people. This made an isolating existent even worse. Mattie did not like hearing noise, people talking, and he especially did not like me leaving the room. 

In this particular case, Santa visited Mattie and Mattie truly struggled to lift his head. Santa brought presents for Mattie, and despite how sick he was, Mattie lifted his head, thanked Santa and then collapsed two minutes after this photo was taken. 

Quote of the day: If you live with dogs, you'll never run out of things to write about.  Sharon Delarose

Peter and I took Sunny to his Canine Good Citizen test today. We arrived at the dog training center 15 minutes early like our instructor adviced. In theory it was good advice, because one would hope that you would be assigned a testing time based on the order you entered the ring. FORGET it! The head testing evaluator today had her own plans. 

I have to admit I have certain needs in the world.... one important need is for order and structure. When I sense noise and chaos, I don't like it and given certainly circumstances, I will simply remove myself from the scene. The head evaluator today had a disposition that rubbed me the wrong way, yet I had to manage it because she most likely would be the one of the two evaluators assessing Sunny. 

The training ring is freezing by the way. There is no heat in there and so it is as cold inside as it is outside. So that was problem number one. Problem number two was the fact that Sunny had to wait around until his turn came up for testing. Testing is done in a big training ring, so you are being watched by others in attendance with their dogs. Needless to say we were there for close to two hours. 

The test prep course was vital for me. Because the handler of the dog is being assessed as much, if not more, than the dog. If the handler leads effectively than the dog should follow and comply. 

The main test evaluator asked her dogs to do some things that the other test evaluator didn't ask her dogs to do. Specifically she wanted to see if Sunny knew the sit and down commands. I know Sunny knows them, but that doesn't mean he always follows them. Given that our test prep class did not cover this, it wasn't something I was working too hard on. Yet Sunny rose to the occasion..... or he is just smart. Because I observed this main test evaluator and sized up the situation quickly. I started working with Sunny at the side of the ring on the down command. I kept showing him a treat and bringing it down to the floor. We did it several times, so that by the time it was testing time, when I said down...Sunny went to lie down on the floor expecting a treat! 

This photo was taken right after passing his test! He got a blue ribbon, and his certificate will come in the mail. The teacher of our prep class liked us so much, she invited us to attend her obedience class in January. I plan on doing it because I want to learn dog commands and know that Sunny and I can communicate effectively. Especially if my goal is to eventually bring him to a hospital for pet therapy. 

My instructor explained to me that the pet therapy program that I hope Sunny can get into acclimates dogs to hospital equipment and the environment, but doesn't teach obedience. So to me that is first and foremost. 

December 3, 2016

Saturday, December 3, 2016

Saturday, December 3, 2016

Tonight's picture was taken in December of 2007. We took Mattie to the US Botanical Gardens. That was a great place to visit around Christmas time. For many reasons. First of which it is kept as warm as a hot house inside which is deeply appreciated on a frigid day and second because the gardens are decorated for Christmas. They are stunning and magical! That day after touring around Mattie paused under a hanging plant. We got a kick out of it because it looked like his hair exploded! 

Quote of the day: Whoever said dogs can't speak was never interested in learning another language. ~ Mark Winik

Tomorrow is the big day for Sunny! At 2pm, he will enter the dog training ring and get assessed! For the past month Sunny has been enrolled in a Canine Good Citizen Prep class. I am thrilled I took this class because I had a lot to learn!!! Though Sunny is the one being assessed, it is his handler (ME) that ultimately wins it or loses it for Sunny. As he is supposed to follow my lead. 

If I want Sunny to apply for pet therapy school/certification, he must first pass the Canine Good Citizen test. So in essence it is a pre-admission requirement to get into pet therapy school. 

Sunny gets assessed in ten catagories. For the past month in class we have been working on each one of these requirements. For the most part Sunny does great, except for #6. In #6, I have to instruct Sunny to sit. He is attached to a VERY LONG leash, like 15 to 20 feet. He is supposed to sit, while I walk away from him dropping the leash as I go. For the most part, each time I do this, Sunny follows me rather than complies with my command. Believe me I have been practicing this at home too, as Peter made me a make- shift long leash. 

The problem with all of this is Sunny is one of ten dogs being assessed tomorrow. They do not tell you what time is your test. So there is a lot of waiting around in a tight space, watching other dogs being assessed. Not something any of us excel at. 

The hopes is Sunny passes his test tomorrow, and is awarded a certificate that looks like the photo!

December 2, 2016

Friday, December 2, 2016

Friday, December 2, 2016

Tonight's picture was taken in December of 2007. That day, I visited Mattie's kindergarten class and read them the story of the "Gingerbread Baby." This was a story Mattie's preschool teacher and my friend, Margaret gave to me. She liked the story because it was written by one of her favorite children's authors, but also because the story featured a main character named "Matti!" In any case, that day I read the children the story and then after the story, I brought in homemade gingerbread cookies..... as I always believed in hands on activities! The cookies were huge and could be easily decorated. I made the royal icing from scratch and brought in all the candies. The children absolutely loved it. The actual cookies looked like the gingerbread baby in the book! It was a day I won't ever forget. 

Quote of the day: A little nonsense now and then is relished by the wisest men. ~ From Willy Wonka the movie (1971)

In recognition of the fact that 10,000 pounds of candy is officially delivered, I feel this cute video sums it all up perfectly. It is from one of my favorite movies.... Willy Wonka. I could get a new nickname... the candy lady! Enjoy!!!

The Candy Man:

I drove to Mattie's school this morning and met up with the Dean of Students, Mattie's kindergarden teacher, and five student volunteers who help me deliver the remaining 4,000 pounds of candy!

This was our first stop.... MedStar Georgetown University Hospital. The candy provides a year's supply for our snack/item cart. 
Our second stop was at Covenant House. Because we collect SO MUCH candy, I am able to donate some to two homeless shelters. One is in Reston, VA and the other is in DC. This shelter is for homeless children. This is my third year working with Covenant House and the children absolutely love these treats especially around the holidays.

The student volunteers from Mattie's school were delightful..... hard workers and patient! They also listened to me as I told them a little bit about Mattie Miracle and why we host a candy drive. I wanted to give them context, so I explained that Mattie was a kindergartner at their school in 2008. After completing kindergarten Mattie developed cancer. The school became an important part of our care community. A community which delivered us lunch and dinner everyday for 14 months. In addition, to that, they also gave us gifts and chocolate treats, practically daily. I realized we were lucky on that front because most of the other families in the hospital did not have such incredible support. In any case, once Mattie died, we decided to continue the candy tradition on a larger scale, with the snack cart and candy drives! 

Since I was going to be out all day, Peter took Sunny to work. Believe it or not, Sunny is requested to come in. On days that he doesn't come in, people miss him. That should tell you about Sunny! Sunny has attached himself to Mark, at Peter's office. Apparently Sunny reminds Mark of his late dog. 
In between work and meetings, people play with Sunny! Peter tells me that his colleagues consider Sunny therapeutic to have in the office!