Saturday, July 20, 2019

Saturday, July 20, 2019

Tonight's' picture was taken in July of 2009. Mattie was sandwiched between his best buddy, Brandon and his physical therapist, Anna. The one thing we all learned quickly was that Mattie complied with physical therapy when he had a buddy. Someone to encourage him or to actually do the activities along side him, almost like a competition. To this day, I will always be impressed with Brandon, whose cancer treatment had finished months prior, but loyally came back to the hospital to visit with Mattie. I would define Brandon as a special friend!


Quote of the day: The dog lives for the day, the hour, even the moment. ~ Robert Falcon Scott


We took Sunny to the vet today to get his annual vaccine for leptospirosis. Though this is not a standard of care, I demand Sunny get this shot! What is this? It's a bacterial disease spread through the urine of infected animals. The urine of rats to be exact. About a month into adopting Sunny, I met a dog owner by the waterfront on one of my walks. He told me about the tragic death of his beloved dog. All because the dog drank from a puddle, then contracted leptospirosis and DIED. The infection is that deadly and given that we live in the rat capital of the Country and we have a herding breed which is fascinated by rats, Sunny has NO choice in my book. He gets the shot! I will always remember that dog lover that I met and how traumatized he was, and how guilty he felt for not inoculating his dog. 



While at the vet today, we learned that Sunny lost a few pounds. Which was wonderful because I did not get the usual litany of..... your dog is overweight. 

While we were talking to the vet, we asked her what breed mixture she thought Sunny was, and we all started chatting about his DNA. I have to admit, I am NOT a big DNA analysis fan for many reasons. But in Sunny's case, she explained that taking our dog's DNA can help guide his medical care. In fact, some breeds require certain medications and knowing more about his background could potentially help us keep him healthy and living longer. So it was that medical component that appealed to me. 

They did a blood test on Sunny and we get the results in two weeks. The panel will generate a report that covers:

• Extensive genetic health screening for 150+ conditions covering 16 major body systems, letting us know which, if any, he is at risk for, a carrier, or clear of
• Breed detection for 350+ breeds, types and varieties broken down into a pie chart for percentages and into a family tree going back three generations
• Extensive information about each breed and breed group found
• A predicted weight profile
• A genetic trait analysis

One thing is for certain, we all agree that Sunny is a herding dog of some type. Sunny was the ambassador today in the office. Making friends with everyone and was calm as a cucumber. I learned today as a senior dog, Sunny has to get a well visit every six months! That was a new one for me, and I chuckled because that is more mandated doctor time than even we humans face! 

Friday, July 19, 2019

Friday, July 19, 2019

Tonight's picture was taken in June of 2009. This was Mattie after his sternotomy. Which was a surgery that opened up Mattie's chest to remove the bone tumors that metastasized to his lungs. Nothing about surgery days was easy, for Mattie or for us. Keep in mind this was Mattie's third major surgery in one year's time. The waiting until Mattie got out of 10-12 hour surgeries was unbearable, however, I learned the surgery is actually the easy part for the patient. It is the recovery after a surgery that is the true heroic feat! Peter and I witnessed and lived through one medical nightmare after the other for 14 months straight. As I always say, childhood cancer is not one trauma. It is instead multiple traumas (you endure throughout the entire process) that add up and remain with you. 

Quote of the day: Certified Child Life Specialists (CCLSs) provide evidence-based, developmentally and psychologically appropriate interventions including therapeutic play, preparation for procedures, and education that support and reduce fear, anxiety and pain for children, adolescents and families. They work in partnership with families, interdisciplinary healthcare teams and community professionals within the evolving healthcare system to meet the psychosocial, emotional and development needs of children and adolescents. ~ Association of Child Life Professionals

Since 2011, Mattie Miracle has been supporting the salary of child life specialists. In all reality we decided to create the first child life program fund at MedStar Georgetown University Hospital (Washington, DC) because we were grateful for Mattie's incredible relationship with his child life professional, Linda. Linda was a God sent to our entire family and we thought providing funding for an additional child life professional at the Hospital would enable more children and families to have access to these vital psychosocial support providers. 




In the Fall of 2018, we started a second child life program fund at Children's Hospital at Sinai (Baltimore, MD). Mattie Miracle is proud to support Adina Levitan's position at the Hospital. 

Recently Adina provided us with a quarterly report (for the months of April to June 2019). We sifted through the report and created this overview document which we will be highlighted in our upcoming July newsletter. 

Adina provides all sorts of supportive services:

• Procedural interventions
• Coping interventions
• Therapeutic Activities
• Normalization
• Parental Support
• Education
• Sibling Support

In a nutshell, this past Spring quarter, Adina directly helped 110 children with cancer and their families and supported over 1,000 families with our Mattie Miracle Snack Cart. Which means in total she was able to interface and provide support to over 1,000 families in a three month time period! I am so glad we are capturing this data and I have to believe Mattie would be proud to know that his connection to Linda inspired us to create child life program funds. Funds that directly impact the lives of so many others like Mattie and me.  

Thursday, July 18, 2019

Thursday, July 18, 2019

Tonight's picture was taken on the first day of preschool in 2005. Mattie's teacher, Margaret, took this photo of Mattie and assigned him the MOON as his symbol. All the children were identified by a symbol, and the symbol was selected based upon the first letter of the child's name. This was how the name "Mattie Moon" became part of our lexicon. It was from preschool! It is rather ironic that Mattie would get assigned the moon, especially since we now look up to the moon to try to connect with Mattie. 





Quote of the day: Five years ago I would be the first person to admit that I’d do anything to get out of gym class. But now, I would give anything to play volleyball like the other kids and be with my friends. ~ Emma Shellenberger 


Recently I have learned about a genetic disease that impacts children and teens. It is called Ehlers-Danlos Syndrome (EDS). I have to admit I had never heard of it before. Yet two friends (who are totally unrelated) talked to me about it looking for guidance on how one manages this from a mental health perspective. 

You maybe asking yourself, what is EDS? Well Ehlers-Danlos Syndrome is a group of inherited disorders that affect connective tissues — primarily in skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provide strength and elasticity to the underlying structures in the body.

Here are the signs and symptoms of the most common form of Ehlers-Danlos Syndrome include:

• Overly flexible joints. Because the connective tissue that holds joints together is looser, your joints can move far past the normal range of motion. Joint pain and dislocations are common.
• Stretchy skin. Weakened connective tissue allows your skin to stretch much more than usual. You may be able to pull a pinch of skin up away from your flesh, but it will snap right back into place when you let go. Your skin might also feel exceptionally soft and velvety.
• Fragile skin. Damaged skin often doesn't heal well. For example, the stitches used to close a wound often will tear out and leave a gaping scar. These scars may look thin and crinkly.

After reading this description, you may be saying how bad can it be to have lose skin and joints? When you think about the important role that skin serves in our lives (as the defensive barrier to everything in our environment), not to mention joints, you begin to see that this is actually a very debilitating and long-term disease for anyone, much less a child or teen. I included an article below that captures the voice of a high school student who manages life with EDS, but at the same time wishes to educate those around her about the realness of this disease. 

Certainly I have limited knowledge on EDS, but I most definitely know what it is like parenting a child with special needs. Even before Mattie was diagnosed with cancer he was unique, given his severe sensory motor issues. As Emma describes EDS as an invisible illness, I absolutely understand. I felt this way dealing with sensory motor issues. Of course I am not comparing Mattie's issue to a genetic disease, I am simply saying that our society doesn't understand things they can't see. Children with invisible illnesses are constantly belittled or ostracized because others think they are making up their symptoms or feelings. After all if you can't see it, it doesn't exist. But unfortunately just like with any illness, there are psychosocial consequences and for invisible illnesses they are tenfold. 

I am switching gears to a visible illness.....When Mattie was diagnosed with cancer, I tried to tell his doctors that he had sensory motor issues. But they did not believe me as to them Mattie appeared to be 'fine.' Of course, they quickly learned that confining Mattie to tight scanning machines and holding him down or in certain positions was a big NO NO! Unfortunately by that point the damage was done. Because his doctors did not listen to us, what resulted was the fact that Mattie couldn't endure ANY scanning without sedation. Yet I truly believe if consideration was given for this invisible issue, we could have avoided additional anxiety and exposing Mattie to anesthetics.  

I also remember quite vividly how people reacted to seeing Mattie.... bald, with scars on his limbs and in a wheelchair. In fact, some of the looks people would give me out in public were noteworthy! Sometimes it would make me so mad, I would want to give people a talking to. But I never did as I did not want Mattie to get upset or to further absorb the nastiness that sometimes surrounded us. To this day, when I think of Nat's stadium, I think of the horror of bringing Mattie there and the commotion his presence seemed to provide to those at the park. 

So what's my point to tonight's blog? It is easy to dismiss an illness (both invisible and visual) as being NOT THAT BAD. In fact, we may want to believe this because it is hard to accept that children and teens live with immense pain and physical/psychological problems. But the point is, educate yourself. Listen to the person describing the symptoms and issues. It is hard enough living with a debilitating disease, but not being understood by a health care provider, teacher, or friend only compounds the situation. 

To My Teachers, From Your Student With Ehlers-Danlos Syndrome:

https://themighty.com/2017/04/teacher-letter-ehlers-danlos/?fbclid=IwAR0F_UcuRXiFr-TlERxxnZ2yB5jnkyGsFz-6KD8L-3xZJcUmCDowzKT9A4w

Wednesday, July 17, 2019

Wednesday, July 17, 2019

Tonight's picture was taken in July of 2009. Mattie was home between hospital visits. That day, Whitney came over to spend some time with Mattie. We met Whitney at the hospital, as she was one of Mattie's favorite child life interns. Mattie clicked with Whitney from the moment he met her, and I was grateful she was willing to come over to our home and play with Mattie. By that point in Mattie's treatment, Peter and I were both exhausted. As treatment left Mattie agitated and needing little to no sleep. Which meant that we were filling a nurse, playmate, and parent role 24/7. 


Quote of the day: That’s one small step for man, one giant leap for mankind. ~ Neil Armstrong


As this week commemorates the 50th anniversary of the Apollo 11 moon landing, there is a lot of coverage on TV. Last night we watched a show entitled, The Armstrong Tapes, on the NatGeo channel. The show gave the audience a 60 minute glimpse into the life of Neil Armstrong. I am always fascinated to learn about the person behind any achievement. As it comes to traveling to the moon and landing on it, I think it took a certain personality type to say good-bye to one's family and be willing to do something no one ever had before. To many of us this would be deemed a great sacrifice he made in order to advance science, to unite the Country, and to claim the USA as being the first to land on the moon. 

What caught my attention about Armstrong was that he had a daughter named Karen, who was diagnosed with brain cancer. She died in 1962, and a few months later he joined the NASA Astronaut Corps. Given that I have the insight on childhood cancer loss, hearing how Armstrong and his wife coped with Karen's death intrigued me. Or as the recording of his wife indicated..... they never talked about Karen as a couple and she really did not know how he felt about Karen's death. One could say that Neil Armstrong was an engineer and therefore focusing on his feelings and emotions was not second nature to him. Perhaps, but in all honesty I would say that it was his incredible focus, skill, and passion to design machines to fly that enabled him to accomplish things only most of us can dream of. I do not believe that Armstrong was cold and unfeeling, especially as it related to the death of his daughter. Instead, I would like to imagine that he chose to sign up to be part of the space program as his own way to coping with child loss. As I have learned the only way to survive the long term grief that comes from the death of a child is through diversions or distractions. Of course flying to the moon isn't your everyday distraction I realize. But then again Neil Armstrong wasn't just any man. 

I came across an article below that addressed the movie "First Man." Which is about Neil Armstrong. The article discusses how the movie takes liberal license and therefore portrays Armstrong as a sentimental man who brought memorial items (of Karen's) to the moon such as a bracelet and released this bracelet into space to honor Karen's memory. I get it! Sounds lovely but in all reality this is a Hollywood spin! A spin that is just ridiculous! A spin that clearly doesn't understand the depth of child loss. 

I do think that when a parent loses a child to cancer, we get good at compartimentalizing our lives. In fact, to some extent this is necessary otherwise we may never function. Which is why I know that there would be NO way that Armstrong would have the emotional where with all to get into a lunar module land on the moon and then step out onto the moon and begin to acknowledge his daughter's death. He couldn't have let his mind or heart go there because then his mission would never have been accomplished. I view him as a man who did not want to mix his personal life with his professional world. Yet of course, I also could understood his first wife's frustration and sadness and why their marriage ended in divorce. 

At the end of the day, I am glad I saw this show and I had the opportunity to learn more about the person behind Neil Armstrong. I think it makes us understand that he had human frailties just like the rest of us. Yet perhaps because he suffered the greatest loss a parent can experience, he was able to risk his own life to go into space and land on the moon. An achievement that the world will be talking about into eternity. 


First Man’ shows Neil Armstrong mourning his daughter on the moon. But did that really happen?

https://www.washingtonpost.com/history/2018/10/12/first-man-shows-neil-armstrong-mourning-his-daughter-moon-did-that-really-happen/?utm_term=.4e747f85af09

Tuesday, July 16, 2019

Tuesday, July 16, 2019 -- Mattie died 512 weeks ago today. 

Tonight's picture was taken in July of 2007. Look at that happy face??? Mattie loved this big kiddie pool we had on our deck. I remember pool time..... it wasn't just about getting wet. Instead, Mattie would bring many of his toys out, throw them in the water, and design all sorts of play schemes around them and the water. 











Quote of the day: The world breaks everyone, and afterward, some are strong at the broken places. ~ Ernest Hemingway


A few weeks ago, I was connected to a child with cancer who is being treated at the National Institutes of Health in Bethesda, MD. He was referred to us by a fellow childhood cancer non-profit. I learned that this 9 year old boy wants to go into law enforcement or the military. In fact, he loves visits from these extraordinary service providers. 

Though Mattie Miracle typically doesn't work one on one with a child and family, I decided to step beyond our mission and try to support this family. Especially since fellow advocates asked us to get involved. I gave it a lot of thought as to who to reach out to in order to request visits from law enforcement and service members. Thankfully, my friendship circle is vast. I credit that to Mattie in all honesty! While Mattie was ill, I met the most incredible people in our community who stepped up to make the impossible, slightly more bearable for us. Mind you I did not know most of the members of Team Mattie in the beginning, but over 14 months of Mattie's treatment, some became very close friends of mine. 

I will never forget toward the end of Mattie's journey, his care community wanted to grant him a wish. Something we could do as a family to make lasting memories. Several people knew Mattie loved boats and wanted to be ship captain. I can't tell you all the amazing outings that were planned for Mattie. One of which included boarding an aircraft carrier, meeting the crew, and the captain. Unfortunately Mattie wasn't physically well enough and emotionally was too fragile, therefore, we never got to visit the aircraft carrier. I have learned with childhood cancer, that if a child wants to do something, you do it. You don't wait for remission or for stability (which is actually what was recommended to us, but I think it's bad advice). Which is why I want to find ways to grant this little boy's wishes for visits. 

So what did I do? I reached out to three friends. One works for the National Capitol Police, another is a Sergeant in the Army, and my third friend was in the Navy. I can't tell you what these three amazing individuals have accomplished so far! Everything from personal visits, gifts of military badges, hats, t-shirts, and even lunch at the Pentagon. Truly remarkable the community that we have, who not only supported us with Mattie, but are there to help us carry out the mission of the Foundation! 

Monday, July 15, 2019

Monday, July 15, 2019

Tonight's picture was taken on July 15, 2007. How do I know? I know because I see two wine glasses on the table. Not just any wine glasses. These wine glasses belonged to my paternal grandparents. They used these glasses to toast their own wedding anniversaries over the years. What was the date of their anniversary? The same as ours.... July 15th. That day, Mattie and Peter went into his pool on our deck. After which we had lunch in which we celebrated our marriage together as a family. 


Quote of the day: The secret of a happy marriage is finding the right person. You know they’re right if you love to be with them all the time. ~ Julia Child

As today is our 24th wedding anniversary, I think it's appropriate to share some photos from our wedding. Keep in mind that when we got married in 1995, my parents were living in Los Angeles, Peter's parents were in Boston, and we were living in Washington, DC. We chose to have our wedding in NY. You can picture the logistics of that!!! We chose NY, because most of my relatives lived there and it was closer for Peter's family. We got married in the same church I received the sacrament of confirmation. In fact  my confirmation and our wedding had the same officiant, Monsignor Hugh McManus.

We were married in Scarsdale, NY and our wedding reception was held in Rye, NY. I thought I was going to love our photographer, given the sample photos and albums we showed up before the wedding. But in actuality, he snapped few candids like I had wanted. This maybe my favorite photo, as it was natural and not posed.   

With my parents. What you can't see is that it was 100 degrees outside that day. 

With Peter's parents and brother. 

Our wedding party. 

My bridesmaids. From left to right are Jen, Karen, Colleen, and Christine. I went to graduate school with Jen and Colleen; I have known Karen since 6th grade; and Christine went to college with both of us. 

Peter and our groomsmen. From left to right: Rich, Dave, Chris, and David. 

Peter grew up with Rich. Dave is a friend of ours from college. Gifted physician and musician. In fact, Dave was staying in the college dorm we were in during the summer of 1989. The summer I met Peter. Dave verified for me that Peter was in choir with us, since I frankly did not believe Peter when he told me we sung together at school. It is the running joke Peter and I have with each other!  Peter's opening line to me was.... 'how is choir?' My response was.... 'why? You are not in choir.' I honestly thought Peter was trying to hood wink me, until Dave said.... 'YES Vicki, Peter is in choir!'

Chris is Peter's brother, and David is the husband of my friend Jen. 

My maid of honor, Karen. I traveled to Philadelphia with Karen recently  to celebrate our birthdays. 

The beauty of our table settings at the reception! We worked hard at getting the look we were after, as there was a Victorian theme to the wedding. 

Of course there is a story to the bride and groom on top of the cake. This topper is a Lladro piece. Any case, when we transported this piece to the bakery, the bride's left hand fell off. We glued it back together and she made a glorious come back for the actual wedding. However, our joke is we call her 'leftie.' Most people do not know our inside joke. When I was moving my parents last summer, I found Leftie at their house in a closet. I have now brought her back to our home. The topper is on display and of course I always get a chuckle at our inside joke!  

Sunday, July 14, 2019

Sunday, July 14, 2019

Tonight's picture was taken in July of 2009. Mattie was off chemo by this point and all of his surgeries were behind him. For a VERY short period of time, we were under the delusion that treatment was over, and we could focus upon rehabilitation. Of course, I know much more about cancer now, and in hindsight, I realize Mattie was never going to have NO EVIDENCE of DISEASE. Mainly because treatment did not cause his tumors to disappear. Therefore, he was always living with disease inside of him even when it was undetectable by scanning. 

This photo showed Mattie working hard with Anna, his physical therapist. They had a special bond. Anna got to know Mattie quickly and assessed what she had to do to get him to actively participate in therapy. It typically involved games and bugs. Do you see the big plastic roach on the floor? Mattie had to try to walk to it, to pick it up, and then most likely would used it to freak me out. Which was the anticipated reaction Mattie was looking for!


Quote of the day: It is an absolute human certainty that no one can know his own beauty or perceive a sense of his own worth until it has been reflected back to him in the mirror of another loving, caring human being. ~ John Joseph Powell

Tomorrow will mark our 24th wedding anniversary. In honor of the occasion, we went out yesterday to have lunch at Chez Francois. This restaurant is located in Great Falls, VA. It is a one of a kind restaurant and experience. I absolutely love their outdoor terrace, which is surrounded by farms (in which many of the vegetables and herbs are grown for the restaurant) and greenery. Before heading out, Peter snapped a photo of me on our deck at home. 

This is the terrace at Chez Francois. It is truly bucolic. I always felt that Monet would have appreciated this setting and I can just imagine his impressionist interpretation of this space. What you can't see is the fountain. So you hear that sound, the sound of birds, and always see MANY butterflies floating by!

See the fountain behind Peter? The restaurant is special. The service is old world, they provide you with a four course meal, and you are NEVER rushed. You don't hear others talking or loud noises either. It is truly peaceful and serene. 

You can see some of the greenery around us!

Our waiter snapped this photo of us before lunch began. 

In honor of our anniversary, they treated us to this wonderful meringue, surrounded by raspberry sauce and chocolate ice cream! Honestly the meringue is so special, like no other I have tried.