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 5th 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!

February 11, 2016

Thursday, February 11, 2016

Thursday, February 11, 2016

Tonight's picture was taken on February 12, 2008. Mattie was in his room and jumping on his bed with his "girlfriend," Charlotte. Mattie was very fond of Charlotte, and even gave her the plastic ring he got from the dentist. When Mattie gave the ring to Charlotte, he told her it was an engagement ring. Do not ask me how he came up with this, he just did this on his own accord. I had no idea he wanted to do this. What cracks me up about this photo was the simple fact that Mattie had not only his mattress on the bed, but also an inflatable aeromattress on top of his mattress. Literally he went through a phase where he wanted to sleep like this but because of safety reasons, this did not last long. As you can see though, having two mattresses on the bed made for great jumping! Which he introduced Charlotte to that day!


Quote of the day: In all religions, the quickening spirit has been symbolically represented as a bird. At the baptism, when Jesus' body was in the water, the Spirit of Christ descended into it as a dove. ~ Max Heindel

Next week I am scheduled for an hour long MRI, which should be a pip! Especially since my head will be immobilized for the scan. However, before taking the scan, the doctor wanted me to have a blood test. So I went to Virginia Hospital Center today to their outpatient laboratory for this test. This is where I always get my outpatient labs done and never had a problem with it. However, today I learned that the outpatient lab doesn't take my insurance anymore (a new policy!). My insurer works only with Labcorp for all outpatient blood draws. Needless to say I was NOT thrilled. The lady working registration couldn't have been nicer and felt bad that I had to experience this change. I knew it made no sense to take out my frustration on her. In any case, thanks to the power of a smart phone, I quickly looked up a Labcorp facility near the hospital and got that task done.


However, when I got home, I found this sight!!! I have named my dove visitor, Lovie. Lovie literally follows me around on our deck and I suspect she has an injured wing since she can't seem to fly. At one point when I opened the door, I thought she was going to come in. It is bitterly cold outside too, so I assembled a box with a towel for her. We shall see if she migrates in there and I have left seed on the deck for her too. 

But all day, I have been wondering what it means to have a dove come visit you and STAY. Honestly this is very unusual, and I have been feeding the birds for 14 years at our home. The last time Peter and I experienced a Dove visit and encounter, Mattie had cancer, was in pain, and several months later we learned his cancer had metastasized. So I have to admit, doves are like an omen to me. 

Yet I spent a few minutes researching doves today and this is what I found..... 

Doves call you to regain your serenity. Do you feel off balance, or out of step with the world? Are you harried or frazzled? The dove reminds you to take a deep breath and release all your tension and stress.

Operating constantly with a cynical worldview is exhausting. In a situation that is frustrating or upsetting to you, a dove may be encouraging you to wipe the slate clean and start again. 

Stereotypically, the dove is portrayed as white and gentle, sweet and loving. The dove is a symbol of the Holy Spirit in Christian iconography.

Doves call you to regain your serenity.... winging their messages of love to our hearts from the spirit world.

So I would like to think that Lovie is sending me feathered messages from Mattie!


February 10, 2016

Wednesday, February 10, 2016

Wednesday, February 10, 2016

Tonight's picture was taken on February 10, 2009. Seven years old today. That alone is hard to come to terms with.... this is what our life looked like seven years ago. 

Whenever we were home between treatments, which never lasted long, I tried to encourage Mattie to use his walker and take a few steps. Each steps was exhausting and painful. What I love about this photo was Mattie's head. Even bald Mattie had an adorable and perfectly shaped head. 






Quote of the day: You can not do a kindness too soon for you never know how soon it will be too late. ~ Ralph Waldo Emerson


As I mentioned last night in the blog, Peter and I were interviewed by Karen Allyn at 8:30pm. Karen is a Washington Broadcaster, whose show airs on a local TV channel in Montgomery County, MD. 

Karen contacted me after our Washington Post article was published. She felt that our human interest story would resonate with her audience and she also wanted to bring attention to our mission and work. 

When we got to the studio we have the opportunity to chat with Karen's daughter, and the irony is my college roommate knows Karen and her family. It is a small world indeed. 

Peter and I have different conversational styles and we focus on different things at times. Which is actually a good, because with both of our skill sets we can run a Foundation. Which is no easy task, yet for me I went into this interview hoping for one thing, and landed up upset and not happy about how it went. I honestly thought we would have more time to focus on Mattie and his battle and have a discussion on how specifically that led to the formation of the Foundation, and what purpose the Foundation serves to us. All of that would be emotionally laden content, and frankly I can understand why Karen steered us away from this. That would probably be a turn off to her listeners. Yet this content to me is REAL and important and when I can't lay the ground work for the Foundation and our work, I get frustrated. 

There was a lot of content to cover in 26 minutes, but Peter did a stellar job at highlighting the Psychosocial Standards, why they had to be developed and the next steps needed to get them implemented. 

However, Karen asked us a good question.... why haven't standards been created before now? Mainly because it seems like a no brainer that such psychosocial support would be needed. 


However, despite the fact that this may seem like a no brainer, I think the majority of health care professionals do not understand or value the importance of psychosocial care. In fact, the overall stigma of mental health issues is pervasive in our society but they are also prevalent in our medical system. I truly believe that some physicians can't grasp that toxic cancer treatments have devastating psychosocial effects on children and their families. I know it was true in our case. After Mattie's surgeries we reported PTSD like symptoms and the responses we kept getting from the medical community were that Mattie was having a reaction to pain medication. Of course upon psychiatric assessment, we learned that indeed Mattie had profound issues that produced several diagnoses: clinical depression, anxiety, and medical traumatic stress. So part of the explanation for the fact that psychosocial care is not included in comprehensive cancer care has to do with the acceptance within the medical community and because most of this care isn't reimbursable, it gets looked upon as an adjunct service. If it can get funded by private philanthropy great, but if not, no problem.

The other issue is there needs to be a demand. The childhood cancer community, which includes family advocates have to start demanding this type of care. When there is a demand and pressure, systems tend to comply. Cancer advocates are great about beating the drum for bio-medical research and drug development. Yet research shows that psychosocial care increases medical adherence to treatment, helps to manage pain symptoms, and enhances overall quality of life. Therefore, if the WHOLE child is effectively treated, both the bio-medical and psychological aspects of care must be addressed. It is a mindset change that is needed for effective 21st century cancer care. 

February 9, 2016

Tuesday, February 9, 2016

Tuesday, February 9, 2016 --- Mattie died 334 weeks ago today.

Tonight's picture was taken on February 18, 2009. The lady next to Mattie is Katie, one of Mattie's HEM/ONC nurses. Mattie loved playing with Katie's grey sweater. Which she wore in the hospital when she was cold. The beauty of this sweater is it had a belt. Mattie loved to use his feet and tug on the belt and pull it through the loops to remove it from Katie's sweater. It was a running gaming they had with each other. In this particular case, Katie was wearing a yellow gown because Mattie probably had a threat of an infection. Mattie had many of these near misses in the hospital, but usually after extensive testing of his blood, it was negative.... meaning he did not have a bacterial infection. 


Quote of the day: Sometimes, when one person is absent, the whole world seems depopulated. ~ Allphonse de Lamartine


A couple of weeks ago I was contacted by Karen Allyn. Karen is broadcast journalist, who was intrigued by our article in the Washington Post. So she asked whether Peter and I would do a guest spot on her internet based talk show. I had to get up to speed about what an internet show was even about, because I understand TV and radio, but am not familiar with the internet version. 

So this evening, we will be interviewed at 8:30pm in Rockville, MD. We will be talking about Mattie, our experiences with childhood cancer and why we started a Foundation. Hopefully I will have more insights to report tomorrow night. 

Forward Motion:
http://fomoka.weebly.com/

February 8, 2016

Monday, February 8, 2016

Monday, February 8, 2016

Tonight's picture was taken on February 19, 2009. Mattie was quarantined in his room because of the fear that he had a contagious infection called c-diff. Needless to say they tested his blood numerous times and thankfully within a day or so we learned Mattie did not have this bacterial infection. Which was a blessing because it was hard enough to be isolated for a day, but once you have c-diff, you are isolated for three weeks for treatment. Can you imagine being isolated in this postage size room for three weeks?

That day in isolation, Linda (Mattie's child life specialist) and Anna (Mattie's physical therapist) came into the room to do a therapy session with Mattie. Despite the isolation there were rockets going off in our room and as usual it wasn't boring. In the doorway was Brandon, Mattie's best buddy. Brandon was in the hospital with a ruptured appendix and had to have surgery. Though Brandon couldn't come into the room, notice it didn't stop him from interacting with Mattie and being a part of our day!


Quote of the day: The train blows, just when I was forgetting. Forgetting that I am here alone. And I wonder if those cars got held up by its passing, just as I have yours. ~ Kellie Elmore


I went to visit the next doctor in my arsenal today, an orthopedist. I wanted to consult this doctor on the neuropathy (weakness, numbness, and pain from nerve damage) I am having in my leg and arm. I discussed my theory that I feel I got these symptoms after taking a long term anti-inflammatory drug for Costochondritis, which I got after my surgery in November. My internist said such a reaction wasn't possible, but the orthopedist doesn't disagree with me. She says it is possible. But to be honest no one can really explain why I am having these symptoms which is why next week I am headed for an hour long MRI. It is pretty awful to go into an MRI chamber head first for an hour. I know the prospect of such a test used to freak Mattie out, which was why he was always sedated. I totally get that. 

I love when the MRI was prescribed to me, the doctor basically said it is just an MRI, no big deal. I actually laughed because I could have given her a lecture over that comment alone. I would think for the average person, taking an MRI for an hour would be daunting. It is a tight space, when your head is involved, they actually put something over your head to keep it in place, and then you have these ridiculous sounds blaring at you and jostling your body. It isn't good, but then on top of that I also have all the memories associated with Mattie and his MRI scans. So in all reality when she says the MRI is no big deal, it is actually quite a big deal indeed. 

I am signing off for today because I have been dealing with a non-stop migraine for three weeks now. This happens periodically for me and when it does it is absolutely debilitating. I have no warning as to when this will come on nor when it will dissipate. 

February 7, 2016

Sunday, February 7, 2016

Sunday, February 7, 2016

Tonight's picture was taken on February 6, 2009. What I love about this photo is it illustrates the entourage that accompanied Mattie on his physical therapy sessions. Standing behind Mattie was Jenny (one of Mattie's art therapists), Denise (Mattie's social worker), Jessie (one of Mattie's art therapists), and Anna's physical therapy intern. Who you can't see was Anna, but she was there leading the pack, holding Mattie's IV and pushing his IV pole. This may seem cute or perhaps over the top, depending upon your advantage point. But in all reality Mattie needed this kind of energy and support from those around him who cared for him. Mattie was physically exhausted from treatment and was in pain from both surgeries and battling cancer. Therefore, this incredible show of support was the exact motivation that Mattie needed and I will never forget. 


Quote of the day: I feel I’ve lost every part of me…there’s nothing left but the parts I’ve given to you. I need you to hold those pieces together. Please don’t forget who I was…then…then there really will be nothing left. ~ Cassandra Giovanni


Not being a football fan, I have trouble with the obsession over the Super Bowl. I am not sure what troubles me more, the sport itself or the OUTRAGEOUS amount of money spent over this production. It is most definitely a production, starting with the half time show (which with every successive year pushes on us LESS and LESS musical talent, and instead makes up for this lack of class with lights, animation, and special effects!) and ending with the many TV commercials generated for this special night. 

One of the ads this year is called "Super Bowl Babies." Basically it highlights children who were conceived in the city of the winning team, nine months after the win. In the CBS News ad below, it says, "for 49 years, our fans have rallied around their favorite teams on Super Bowl Sunday and passed their pride and passion down to the next generation," said NFL Chief Marketing Officer Dawn Hudson. "We are excited to celebrate our football families by shining the spotlight on 'Super Bowl Babies,' those fans born into a lifelong love of their team and the game."

This commercial seems to directly point to our society's misdirected priorities and yet, I bet it becomes a very popular and well watched ad. But to me, we are more wrapped up as a society over a sport and the "family" such a sport produces than bringing attention to more serious minded topics such as childhood cancer. I see it daily on social media sites.... it points to what our society wants to see and "likes." What is liked and goes viral is typically zany, spoofy, or happy things, certainly not sad topics or substantive messages. 

Ideally I would love to tell them to hold the half time show, forget about each Super Bowl commercial and put the money spent on all this nonsense to something tangible that will benefit our communities. Of course, I realize I am in the minority!!! If you haven't seen the ad I am referring to, I posted an article about it below and the link to the ad itself. 

http://www.cbsnews.com/news/super-bowl-50-nfl-ad-celebrates-super-bowl-babies/

The actual ad:
https://www.youtube.com/watch?v=9KqekigARfE&feature=player_embedded

February 6, 2016

Saturday, February 6, 2016

Saturday, February 6, 2016



video

Tonight's video was taken on February 18, 2009. It was clearly the night time, as you can hear our sound machine (sounds like rain) running in the background. We used a sound machine to drown out the beeping of machines and the chaos in the hallways of the PICU. However, I captured Mattie on video because when he did not want to be touched or have his broviac catheter accessed. When Mattie felt this way, he would try to curl up in a ball. Which wasn't easy for him given his extensive limb salvaging surgeries. In the video you can hear me talking, but I honestly can't recall who was in the background talking with me. It had to be one of Mattie's nurses, but I can't place her voice. 


Quote of the day: Death laughs, no one else does.Amy Neftzger


Peter and I spent most of the day at home. However, by late afternoon we walked and even went out to dinner. On our walk home, we passed the White House. I couldn't get over what I was seeing because the fountain (closest to the gate) looked like it was colored GOLD. Since the childhood cancer community couldn't get the President to light the White House gold during childhood cancer awareness month, this has become a hot topic and sensitive issue for those of us touched by childhood cancer. So I chuckled to Peter and said.... this must be an accident, because the fountain looks like it is lit in Gold lights. 



I received this comment today on the blog from one of Peter's clients in Oklahoma. Melody said, "While Peter was in Oklahoma, he showed us his new office space. While I love the idea of just being able to talk to the person next to you without having to move an inch, I hated the no personal items policy. Glad he put the kabash on it! Love the windowsill! Fat chance there isn't a picture of Mattie on his desk :) Been following the blog for years! Glad I found the comment box."


I was thrilled to receive Melody's comment tonight. For many reasons. The first of which is Peter loves traveling to Oklahoma. When Peter travels there, the first thing I hear about is how nice people are on the plane. Which to me is unheard of traveling coast to coast. Peter tells me that people have chats and conversations with each other and I honestly laugh because on each coast of the United States, I think we are trained NOT to engage with those around us. I am not saying it is healthy, but it seems to be our reality. Yet I love connecting with people, so I have a feeling Oklahoma would be right up my alley. 

Peter always has a wonderful visit with his colleagues in Oklahoma and this particular visit that he just came home from this week sounded very special. The group went out to sing Karaoke together, and it just sounded like a wonderful way to further relationships and get to know one another better. Clearly not all business travel is pleasant, so when Peter comes back energized this captures my attention.

Of course what captured my attention is that Peter told me that several of his Oklahoma friends read the blog. I am very touched and honored to hear this and again it tells you about the importance of personal connections in Oklahoma. I think I am living in the wrong state! I appreciate Melody's comment because when I heard about Peter's office having a NO personalization policy of one's desk space, I laughed. I laughed because when you spend, in Peter's case 12 hours a day, in a space it is important that you can make your space comfortable and identify it as your own. After all not having an office with four walls and a door is a major adjustment, but asking one to work in a sterile, white washed, no character environment is unreasonable. Naturally decorating with some taste and discretion is important. But it was nice to hear Melody's perspective and to know our feelings weren't unusual.... and she is right.... there is definitely a photo of Mattie (well a few!) on Peter's desk.  

Melody, if you are reading this.... you and your colleagues have made my day! Thank you for reading the blog and following our grief journey with me. Hopefully one day I will meet you in person. 

February 5, 2016

Friday, February 5, 2016

Friday, February 5, 2016

Tonight's picture was taken on February 5, 2009, seven years ago today. Which is hard to imagine in and of itself. Mattie was pictured with Sally, the story book lady. Sally is immensely talented and one of the only visitors Mattie NEVER turned away. Sally made stories come alive and allowed the children to actively take part in each tale. Whether that was playing a part, making noises and sound effects, or you name it. Sally had a way of totally getting to know each child, so every time she visited she knew instinctively what motivated and intrigued each child. 


Quote of the day: The loss of a loved one is like that of a limb; time may heal the anguish of the wound, but the loss cannot be repaired. ~ Robert Southey


I went out to lunch today with a friend who I have gotten to know quite well this year. We got connected through mutual friends on Facebook. In any case, over lunch my friend asked me who do I talk to about Mattie? This wasn't a clinical question, it was more of a simple and honest question about who hears my tales about Mattie when he was well and of course also listens about the pain and anguish associated with Mattie's cancer battle and death? She asked excellent questions, but my answer truly isn't simple. 

It isn't simple because I would say the loss of a child is not a topic anyone really wants to hear about for a long period of time. I noticed it scared many people away in the first year after Mattie died, and then of course if you survive the first year, most people think that life moves on and things get better over time. However, that of course isn't the case as anyone who has suffered a traumatic loss knows. The loss walks with you always, but you learn to live with this feeling. 


When I got home today, I found Mr. Falcon perched on our bird feeders. He maybe beautiful, but he scares away all our birds. He is just a mean looking thing, don't you think?! 











He is awaiting his next prey! The piercing eyes, the talons, and that beak are all very intimidating to me!