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

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

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


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



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

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

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

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

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

A Remembrance Video of Mattie

Random Shots of Mattie, Family and Friends

August 24, 2013

Saturday, August 24, 2013

Saturday, August 24, 2013

Tonight's picture was taken in June of 2006. I received this azalea for Mother's Day and that weekend we finally got around to planting it. As you can see Mattie was right along side it showcasing the finished product. Though Mattie is no longer with us, there are many symbols around our deck that we have on display in his honor. Some of the special items include: butterflies (comprised of all materials), wind chimes of the sun and the moon, seashells we collected together, two fountains that he built with Peter's help for my birthday, pinecones Mattie collected, and several bird houses!


Quote of the day: You will have to make up for the smallness of your size by your courage and selfless devotion to duty, for it is not life that matters, but the courage, fortitude and determination you bring to it. ~ Muhammad Ali Jinnah


It seems to me that tonight's quote could have been written with Mattie in mind. Though Mattie did not live a long life like we expected or hoped, it was his "courage, fortitude, and determination" that made Mattie who he was and why he was so incredibly unforgettable.

Typically weekends are a nightmare for Peter and me. Still after almost four years! They are long, usually isolated in some way, and at times I feel like we are stuck in an alternative universe. However, this weekend, friends invited us out to dinner today and tomorrow. Ironically we do not even think about going out with others, it is just our mind set. But for me knowing we are going out and will be interacting with others is very therapeutic for me.

I spent a good portion of the day in our garden. I snapped a photo of my "Window with a View." This is our view from our living room, which I love during the summer months. The trees are in bloom and our balcony is filled with all sorts of plants. Many of which migrate inside for the winter, which makes our inside quite GREEN!




I entitle this photo, "Tall Plants!" Check out the two plants on the left hand side of this photo. Actually they look more like trees don't they?! One is a dracaena and the other is a rubber fig plant. They were both given to me by friends right after Mattie died. They knew I loved plants and they wanted to show they cared. When I received these plants they perhaps at best were a foot tall, from the bottom of their flower pots to the top. Now look at them, they are taller than me. Which means they are over 5 feet, 3 inches!







Keeping everything in our garden and balcony green and healthy takes work! I am constantly at these gardens during the week and the weekend. As you know, Peter and I went on various trips this summer, and if it weren't for our friend, Maria, things would have died. Though we are at the end of the summer season, everything on our deck still looks happy and colorful. When my neighbor on the sixth floor tells me how much she likes looking into our garden, I try to imagine what her aerial view looks like! I have to tell you our garden is a stop over for many birds, butterflies, and though I missed it, my neighbor tells me a hummingbird came by last week! This may not sound like a big deal for you, but we live in the heart of the city, where the typical bird is the pigeon.

Our deck is green everywhere. We have plants on the walls, outside our deck door, and in planters. In addition to plants, we are growing tomatoes, basil, and a host of other herbs. I honestly think that my cooking is better in the spring and summer because I am inspired to walk out onto the deck and pick fresh herbs to cook with. It transforms any dish for the better!



 

August 23, 2013

Friday, August 23, 2013

Friday, August 23, 2013

Tonight's picture was taken in September of 2008. Mattie was a month into treatment and as you can see he was visited by his "girlfriend" Charlotte. Mattie and Charlotte were watching a Scooby Doo video and kneeling by Mattie's side was Tricia. As our faithful readers know, Tricia was one of Mattie's favorite nurses. He told her he loved her and he knew she really had his best interest at heart. Mattie read people very well! Tricia was ALWAYS there for Peter and me and she holds a special place in our hearts as not only as an outstanding nurse but an incredible and compassionate person. To me this photo was a composition of Mattie  sandwiched between two people who cared about him, and as Peter always said, "to know Mattie was to love him." INDEED!!!


Quote of the day: ...if anything matters then everything matters. Because you are important, everything you do is important. Every time you forgive, the universe changes; every time you reach out and touch a heart or a life, the world changes; with every kindness and service, seen or unseen, my purposes are accomplished and nothing will be the same again. ~ Wm. Paul Young


Peter and I were contacted by a PhD student clear across the world from us! This individual is studying in Australia. He sent us a message because he is working in a bio lab, exploring the genetic causes for osteosarcoma. As he told me, his lab has identified genes that increase the risk of developing osteosarcoma, and specifically is trying to understand how the loss of these genes affect bone biology and lead to tumor development. Mind you his research is being conducted on mice, not humans. Nonetheless, progress has to be made somewhere.

This PhD candidate attends the St. Vincent’s Institute of Medical Research (www.svi.edu.au) and is presenting in a Three Minute Thesis Competition, which is organized by the University of Melbourne on August 26. To learn more about this competition, go to: http://gradresearch.unimelb.edu.au/3MT/. The reason why this researcher was contacting me, was that he learned about Mattie through the Internet and wanted to get our permission to use his story and a photo of him in his presentation. I guess chatting about mice to an audience of humans doesn't make the same kind of impact as showing a photo of a beautiful boy struck down by a disease he is trying to research. I totally understood his point, in which he has THREE minutes to summarize his research and the disease to an audience filled with NON-scientists. I told him this was one tall order, nonetheless an important one. The goal is to bring awareness to the community at large about a rare disease. Needless to say Peter and I gave him permission to use Mattie's photo and I am encouraging him to share his video with us and to write an article for our Foundation newsletter. We shall see what becomes of this.

I know the readership of Mattie's blog is not contained to just the USA. I have received emails from people in the UK, Thailand, Australia, and even India! If Mattie knew the impact his face and story had on people, I am not sure he would believe it. But as Mattie's mom, I know he was a force when he was alive and he continues to be a force in spirit!

August 22, 2013

Thursday, August 22, 2013

Thursday, August 22, 2013

Tonight's picture was taken in September of 2008. Mattie had undergone a month of chemotherapy by that point. Despite every form of toxicity we put into Mattie's body, his spirit and energy, wouldn't give up. Mattie was typically busy on some sort of project at the Hospital. Pictured here was our own archeology dig going on right inside a PICU room. Notice the pink bucket behind Mattie, used for nausea. The bucket seems to add a dimension of reality to this photo, as to remind us that Mattie was indeed sick! Mattie had his goggles on and tools in hand to carve away at a large piece of clay. Over time within the clay Mattie revealed or unearthed plastic dinosaur bones. After he excavated them, he then would assemble them together. Mattie loved these kits and did LOTS of them!

Quote of the day: To Carol, the number five is yellow, Thursdays are dark burgundy and the elevator bell of her apartment rings in an amazingly bright magenta. ~ Wendy Leung


So does tonight's quote get you to pause?!!! Did you skip over it? Go back and check it out. I think it SHOULD make you wonder a bit!!! Does it? One of the gifts I am giving myself this week, after seeing the doctor, is the time to spend outside on our deck reading. When I went to Boston in July, I was chatting with my niece about the various books she had or is reading. In turns out we like similar books, or I should say books that process relationships, grief, loss, and psychological content. Obviously there are many years between us, but one book she was telling me about caught my attention. It caught my attention because I was UNFAMILIAR with the neurological issue she was talking about. So she lent me her book. I am the kind of person who picks up books and reads a chapter here and there. So I can read multiple books all at one time. Mind you I never did this before Mattie had cancer. My ability, or lack thereof, to focus now is different.

Most parents are familiar with the books their children read. Some parents actually read their children's books to help them process them for school or simply to share in the overall reading experience. I of course do not have this luxury. Which is why when my niece shared a book with me, naturally I felt compelled to read it!

Any case, the book's title is, A Mango Shaped Space by Wendy Mass. Now keep in mind this is our modern generation's version of a Judy Blume book. Nonetheless, I would have to say for a book written for a tween, preteen, and teen, I am enjoying it much better than any Judy Blume book I was forced to read in school. The book's main character is a teenager with an unusual issue. Colors pop up before her eyes when she sees or hears letters and numbers. You can imagine that math class would be impossible for her because as her teacher is writing a math problem on the board, she is doing double the work to decipher the numbers from the colors that are popping up in her head! This young girl has something called Synesthesia. I can tell you I have NEVER heard of this and it apparently has been an issue that has been around for decades, just not well researched.

Synesthesia (derived from a Greek word meaning senses coming together) is a neurological condition in which stimulation of one sensory or cognitive pathway leads to automatic, involuntary experiences in a second sensory or cognitive pathway. People who report such experiences are known as synesthetes. Some scientists believe synesthetes have more connections in the brain, so that a scent, for instance, may set off visual signals as well as olfactory responses. This condition tends to run in families. I added this colorful visual because this is how synesthetes perceive numbers and letters. In color! Though most of us see print in black and white, this is NOT true in a synesthetes' world.

Only 5% of the US population has this condition. Of the various manifestations of synesthesia, the most common involves seeing monochromatic letters, digits and words in unique colors, this is called grapheme-color synesthesia. One rather striking observation is that such synesthetes all seem to experience very different colors for the same graphemic cues. Different synesthetes may see 3 in yellow, pink or red. Such synesthetic colors are not elicited by meaning, because 2 may be orange but two is blue and 7 may be red but seven is green.
Even more perplexing is that synesthetes typically report seeing both the color the character is printed in as well as their synesthetic color. For example, is both blue (real color) and light green (synesthetic color).


Daphne Maurer, a developmental psychologist at McMaster University, suggests all human brains produce a multitude of connections. But over time, depending on how much those connections are used, some are strengthened and others are pruned. “What seems to happen in synesthesia is less pruning, so you end up with a brain with extra connections,” she says. Another possibility is that these extra connections are inhibited in individuals without synesthesia. Dixon notes that people using the drug LSD commonly report seeing colors when listening to music – a common experience of synethetes. “Something in the LSD is turning on a neural connection between sound and color that is normally turned off, whereas synesthetes have these turned on all the time,” he says.
Beyond teasing out the oddities of the human brain, scientists believe there are practical applications of studying synesthesia. Synesthetes, for example, tend to have heightened memory, and Dixon says the way they make memory associations could teach the rest of the population how to improve memory.

But having synesthesia can have its downside. One woman reported experiencing colors and shapes when she hears music and when she has intense emotional experiences. Because of this, unpleasant experiences can sometimes be difficult to forget, and pain is much more vivid. She claims to get the pain two ways: physically, but she can also see it. Yet despite this, this woman says she had never wished to be “cured” of her synesthesia, even if it were possible. She says (as do many others with this issue): “I couldn’t imagine my life without it. Because of the beauty in it – the music and the art, the words and the patterns, all of that – I would keep it.”

I am intrigued by synesthesia and, of course from a psychological perspective, I am fascinated by how people react to the character in the book and how this condition impacts her life, both positively and negatively. Of course for me no book would be complete without someone dying. I haven't gotten to this part yet, but I sense this book is going to discuss the loss of a cat. This young girl is very close to her cat (perhaps her closest friend), and feels the cat embodies the soul and spirit of her deceased grandfather. So given my timing with our loss of Patches, I shall see how I feel about all of this.

I end tonight's posting with this beautiful photo of sunflowers. As I was out and about today, I drove passed a house in Arlington with these HUGE sunflowers in front of the door. I must admit this seemed like an awkward place for these beauties, but their heads were enormous. They caught my attention. Thankfully there was a traffic light and it was RED. So I pulled out my camera and snapped this photo.


 

August 21, 2013

Wednesday, August 21, 2013

Wednesday, August 21, 2013

Tonight's picture was taken in August of 2009. A week after we learned about Mattie's terminal status. If I had to entitle this photo something, it most likely would be, "come one, come all!" That afternoon, in the child life playroom, Mattie got the attention of Jenny and Jessie (his art therapists), Linda (his child life specialist), child life volunteers, and even Liz (who was a resident artist who met with in-patient kids on occasion to write and create poetry). Honestly, we needed all that support to make it through that moment in time. As the staff knew, by this point, Peter and I were frazzled and were just delivered yet another blow. Certainly it was the job of the Hospital's psychosocial support staff to help us, but many of these women weren't just staff to us. They became part of our family, and like any good family, they rose to the occasion and showed us what they were truly made of. It saddens me that many of our Hospital family no longer work at Georgetown anymore!


Quote of the day: Sorrow makes us all children again -- destroys all differences of intellect. The wisest know nothing. ~ Ralph Waldo Emerson


As many of you know from my postings, I haven't been feeling well for a week. I finally did see the doctor yesterday and she put me on antibiotics. The power of almost 1700mg of antibiotics a day!!! I feel so much better today and can function. I have felt so lethargic for days! Even Peter was worried, especially since he saw that I could do VERY little without being exhausted. I am slowly coming out of a fog, which is a good feeling. I met Peter for lunch today, but before meeting him, I walked around Foggy Bottom. The students are moving back into the George Washington University. Things are VERY different from when I went to college. The University has a whole "bellhop" program, where a team of students will actually help you move into your dorm. I saw them roaming all over campus today!

Before meeting Peter, I took myself out for hot tea and to read a book (one of the many books, I am reading. This one, was given to me by my niece. She thought I would like the psychological content of it, and she is correct!). While having tea, one of the servers started talking to me. Mainly because it was such a beautiful weather day, it just puts you in a talking mood and I was sitting outside. Any case, I learned this was his second job after retiring after 20 years from working for the District government. I asked him about his former job, and it turns out he was a counselor in a juvenile detention center in DC. He explained to me that his own protective factors growing up were his parents and sports. He said without those things, he could have easily landed up in prison. He has spent his life trying to help young boys in DC and he shared with me some of the issues these boys had with their family of origin and the various other hardships they experienced. All of it was heartbreaking. Despite the grief and loss I live with, I am most definitely able to hear other stories, to know there are others far worse off than me, and to appreciate that I have a roof over my head and the finances to manage it. It was a humbling encounter that affected my mood all day.

The highlight of my day was lunch with Peter. We meet occasionally out of our home environment to reconnect. Some days we just need emotional support or a friendly face. I know it helps me! I then spent the rest of the day at home doing chores. But my day didn't end there, in fact I was surprised with TWO gifts of kindness. When I opened my front door to get fresh herbs in my garden, I was greeted with this beautifully painted birdhouse. There of course is a story to this! Years ago a friend gave this birdhouse to Peter. But it had rusted out. Our complex's painter, a wonderfully kind gentleman, came to paint our door one day months ago and noticed this old birdhouse. But he did not say anything. Any case, when we got back from our trip to North Carolina in June, I noticed our birdhouse was missing. Which is unusual! In all the years I have lived here, NOTHING has been stolen from our deck. Now today, months later, when I opened up our door, I saw this cutie. Derrick is a Baltimore Orioles fan, so he painted this Red Sox birdhouse in Orioles colors. I just love it and I particularly love the oriole on the perch. It is this kind of act of kindness that get me to pause and get re-energized about our world. A world in which even on a good day, I don't feel a part of.

The second act of kindness came in an email form. A young girl wrote to us. She saw Breland's video and has been inspired by Lauren's Bows for Hope. She wanted me to know that she makes things like purses and other items and wanted to know if she could sell her items in her community and donate her proceeds to Mattie Miracle. She had specific questions about how we use our funds and whether we directly help children. Naturally our supporters know the answer to this is a big YES!!! I did let this young lady know the details surrounding our Foundation, and I am encouraging her to tell me about herself, so we can feature her in a newsletter. None of this would be possible without Lauren! Lauren is a force, and at the young age of 15, knows how to get things accomplished!
 

August 20, 2013

Tuesday, August 20, 2013

Tuesday, August 20, 2013 -- Mattie died 205 weeks ago today.

Tonight's picture was taken in August of 2002. Mattie was four months old and full of energy. My joke was that Mattie was born 'ON.' He rarely napped and did not seem to need much sleep at night either. One of the things Mattie loved to do at that age was examine his stuffed animals that I kept for him in a basket. I say "examine," because Mattie did not actually like playing or cuddling with these creatures. He was more interested in feeling their texture or hearing the noises they would make. Some were stuffed with jingle bells inside and some would make a cute sound if he squeezed them. Either case, Mattie got a chuckle out this basket and I got a kick out of observing his reactions.


Quote of the day: Sure, friends and family have been supportive, but it’s proven to be the case with me that there is a mandate as for how long their unwavering support, patience, understanding, concern and empathy lasts. The truth is, the situation is so unbearably sad that it becomes incredibly emotionally draining on the other person. The realization that they can’t fix your sadness sets in, the frustration builds because not even they can see an end in sight, then gradually it starts to impede on the happiness in their life. They haven’t lost their child so why should they spend all their time sad about yours? ~ Samantha Hayward

My "friend in cancer" sent me a link to an article written by Samantha Hayward. Samantha is a mom of four children. However, her eldest daughter (19 days old) died unexpectedly FOUR years ago. I emphasize FOUR years ago and yet even today this loss continues to send Samantha into a tail spin. I actually think that Samantha's article is a very courageous, passionate, and honest account of what it is like to lose a child. Her child did not die from cancer, yet the similarities in the aftermath for both of us (and probably for all parents who lose a child --- whether they want to admit or not) are quite uncanny and similar.

Before I continue writing, I did want my readers to know that I included a link to the article below. As any writer knows, and frankly I consider myself a writer by now. After all, I have been writing since July of 2008. Our readership continues to be in the hundreds daily, so though you are not buying my words, something inspires you to come back and keep reading. Of which I am grateful. So Mattie has made me a writer. Back to my point, as any writer knows, we get critiqued. Every now and then someone lets us know we either upset them, offended them, or made them think and laugh. A whole range of feedback. I have found at times when I am more upfront about what pains me, I land up hurting someone's feelings. Which is why I may have an internal blog inside my head, one that doesn't get posted. But one that would make excellent content for a book. Some of the things Peter and I have experienced regarding interacting with others, post-Mattie's death, are noteworthy both positively and negatively.

If you look at Samantha's article you will notice at the bottom of the article, people left her comments. Many of the comments are supportive and empathetic, but one in particular is NOT. In fact this one person wrote to Samantha and said that her writing is "aggressive and dismissive." I wish I could say I was surprised by this reaction, but I am not. Sometimes when we write about our true emotions and the disappointments we have particularly with people who we perceive are no longer there for us emotionally it sets off a chain reaction of negativity and defensiveness. As Samantha indicates the best way to heal and cope with the loss of a child is to be able to talk about it and about one's memories and feelings. Not just once but over a lifetime. It becomes equally depressing when those closest to us, who we think will be on this journey with us forever, chose not to be over time. These are the people who grieving parents are most likely to turn to and trust, but that can't happen when these individuals feel like their tour of duty is up and over. So who does a grieving parent talk to when those closest to them have had enough??!!!

Samantha's article resonated with me on so many levels. I think she had the courage to write about several things which I just can't touch upon in this blog. As tonight's quote points out, Samantha talks about a "mandate" of time. Meaning that she observed in her journey that after a set period of time, people started pulling away and their unwavering support began to die off. Naturally this happens for many, many reasons. People's lives are busy, other crises may arise, and frankly as Samantha points out the simple fact is mothers of deceased children and mothers of living children are DIFFERENT. We can impede the "happiness" of others and others also feel helpless because they realize they can't change the facts or the future for us. Therefore, when helplessness sets in, pulling away naturally occurs. Unfortunately this pulling away is devastating for grieving parents. More devastating than Samantha elaborates on or which I care to go into detail on Mattie's blog.  

Samantha details in her article the top ten points to remember or reflect upon when interacting with a parent who lost a child. I am not covering all ten, but I have to say a few are mentionable. The first point is KEY! The first one has to do with time. We have a real misnomer in our society. We think after a year of grieving life goes back to normal!!! Newsflash... IT DOESN'T! I am not sure what Samantha's mandated time was, but mine was a year. After a year, things changed in terms of the support we received from others. For them, this probably did not seem like a big deal to end the support. Whereas to me, it seemed like the end of the world. I guess my advice if you are helping someone who is grieving is to discuss the support you are giving them and discuss what happens after the one year mark. Not having this conversation can be harmful because it leaves the griever more confused, feeling isolated, and just unsure about what the future holds. Having an honest conversation, though hard, will spare the griever in the long term. The last thing you want the parent to experience is MORE grief from the loss of your support!  

Samantha's next two points center on the fact that others want us to be happy and to return to the person we once were. Others most definitely want this for us, and certainly no one wants this more for ourselves than we do. Do you think we enjoy living with this pain, sadness, and anger inside of us? When we aren't happy and we do not return to our "old" selves, it usually leads people in our lives to tell us to seek counseling! I recall early on, I took in a lot of feedback from others, people who thought the only way to survive Mattie's death was through counseling. Being a counselor, I am well aware of the benefits to therapy, but I also know its limitations and given my circumstances I did not feel talking to someone who didn't know Mattie or his battle was going to be helpful to me. But others kept doubting my feelings, so one day I went to visit Mattie's social worker at the hospital. She listened to my concerns and then stopped me. She said, "Vicki who would you be going to counseling for, yourself or for other people?" It was a great question and spot on. I valued her feedback because she could tell given her experience as a grief counselor that I wasn't dangerous or diagnosable, I was grieving. Grieving, which is a process that Samantha in her own way points out lasts a lifetime. Or as she states it, she won't stop thinking about her daughter until she dies and lands up with her.

Samantha's fourth point is about milestones like birthdays, anniversaries, or holidays. I think everyone knows that the FIRST of anything is always harder for a grieving parent. But what is also confusing and hurtful to a grieving parent is the lack of consistency. We live with uncertainty, we saw Mattie battle a horrible disease, we saw that despite our best efforts nothing could save him, and now we live day to day wondering about the future. A future in which we aren't parents, a future where we can't relate to the highs and lows, ups and downs of having a preteen (the age Mattie would be today). When support is offered to us from friends and family, I hate to say it, but to many of us grievers, we believe this support will be long lasting. Maybe we cling to that because we are left raw from the loss we have survived. This support makes us feel alive and part of the world. So when the first birthday, anniversary or milestone is acknowledged but not subsequent ones, we are left confused. We are left to think that the child who died doesn't matter and perhaps neither do we.

I imagine right about now, some of my readers are saying WOW! Yes wow is right, Samantha evoked certain emotions, none of which are new or novel to me, just some of which I do not care to elaborate on here. But as Samantha appropriately acknowledges there are very FEW resources for bereaved parents, very few which speak open and honestly. I believe there is a reason for this. I could write on several of the topics Samantha highlighted for days, but I will spare you further commentary. I am happy she wrote the article and even happier she broke the barrier about some topics. I encourage you to check out Samantha's words and insights:

How to talk to a parent who has lost a child. From someone who's been there. Click on the Link: 
http://www.mamamia.com.au/parenting/ten-points-i-wish-every-person-knew-about-the-death-of-a-child/


I end tonight's posting with a photo of a little Train that takes visitors around the city of Toledo, Spain. Karen tells me Toledo is very hilly and to transport tourists around, this cutie is used. Mattie would have loved seeing and riding on this train, which is most likely why Karen sent me the photo! As today marks the 205th week Mattie has been gone from our lives, a red train seems appropriate.

August 19, 2013

Monday, August 19, 2013

Monday, August 19, 2013

Tonight's picture was taken in August of 2008. Mattie had just begun chemotherapy (no surgeries occurred yet) at that point and therefore still had his hair and was still able to walk and use his arms. We really had no idea the horror that awaited us, which was probably a good thing. Since you can only handle horror and trauma in small dosages. Pictured with Mattie were his amazing art therapists, Jessie (on the left) and Jenny (on the right). Neither one of these ladies are at Georgetown Hospital anymore, but thank goodness for us they were there when Mattie was battling cancer. As you can see they knew exactly how to stimulate Mattie's creativity and they were not only therapeutic for Mattie, they were essential for me. Mattie had an amazing support team at Georgetown, comprised of Linda (Mattie's Child Life Specialist) and Jenny and Jessie. None of them had children at the time (which they do now!) and yet they understood the complexities of Mattie's diagnosis, the stresses, the fear, and the need for support that we all needed on a daily basis. A threesome never to be forgotten.


Quote of the day: In these moments I understand that whatever idea one has that one has control over one's children's lives or one's own life or their collective futures is transient at best and absent at worst. ~ Dr. Mark Greenberg


As my faithful blog readers know, I have become connected to a mom who lost her only child to cancer in June. Since our connection, we reach out to each other daily in some shape or form. My "friend in cancer" sent me an email while I was in Europe filled with some very meaningful links. One of the links that I will write about tomorrow truly resonated with me. Since I mark Mattie's loss by the number of Tuesday's (the day of the week Mattie died) that pass, I figured talking about the impact of cancer on my life through referencing this article should appropriately happen tomorrow. 

One of the other links my friend sent me was an 18 minute long YouTube video featuring Dr. Mark Greenberg. Dr. Greenberg is the Chief of Oncology at The Hospital for Sick Children, and for a decade co-chaired the national Canadian Childhood Cancer Surveillance and Control Program. Today, Dr. Greenberg is a senior advisor and past medical director of the Pediatric Oncology Group of Ontario (POGO).

I attached the link to the video below in case you would like to see it for yourself. To be honest, I watched the video three times because I wanted to capture the essence of what he was saying and to write down several things word for word. Dr. Greenberg is not only an oncologist but he lost a child to cancer. As he humbly lets his audience know is that in some circumstances he can neither cure nor heal. I like his honesty, because that is indeed correct! Doctors aren't God, though some do have a very high opinion of themselves. The insights from Dr. Greenberg resonated with me because here is a doctor who acknowledges that cancer treatment is NOT just about the biology of the disease. As I always say, cancer is much much more than the chemotherapy, the radiation, the surgeries, and immunotherapy treatments!!! A small percent of doctors (emphasis on SMALL) understand this, but I suspect Dr. Greenberg learned this poignant lesson in a very harsh manner. Through the diagnosis and loss of his child to cancer.

Dr. Greenberg stated, "childhood cancer is not a disease of cells, genes, proteins, arms, legs, blood, bone, and brains. It is all of those, but it is a disease of mothers, fathers, sisters, brothers, grandparents, and the extended society in which they live. When cancer intrudes on your home its impact never goes away." Absolutely and his psychosocial approach to medicine comes shining through in just 18 quick minutes!

In fact, he goes on to say that the impact doesn't go away whether the child lives or dies and I believe from my own personal experience this is very correct. In his video clip he discusses the issues that arise with a life threatening illness. The psychological impact of having to make life and death decisions about your child's cancer care is daunting! As Greenberg aptly points out and I apply it to our case, when Mattie was getting treated, I did not just make one life or death decision, I was making them DAILY. Some days hour by hour. I can't tell you the type of stress and havoc that can put upon a human being both physically and mentally. Which may be why Dr. Greenberg stated, "life threatening illness changes everything for everyone!" The crisis maybe technically over, but the crisis remains within me. It clouds every avenue, thought, and feeling in my life. I know this intuitively but when I heard an oncologist say this from his own professional and personal experience, I felt vindicated. I live in a world where the majority of people around me don't speak my language (thankfully, otherwise we would have an even more depressed world than already exists!). Grief and loss of a child produces a new language, some people may try to study the language and even be empathetic enough to get some of the language's nuisances. But the language is truly unique for those of us who live in this nightmare of a club.

Dr. Greenberg discusses how we live in a society that loves CONTROL! He is totally correct. We live in a world where parents have their children programed from morning to night, they enroll them into every program and activity under the sun, and the list goes on. For the most part we humans are under some delusion that we can control outcomes and we mostly live by the motto that if we work hard and do the right thing, a positive outcome will occur. TOTALLY WRONG!!! If that were the case, Mattie would be alive today! Also if you doubt what I am saying, I encourage you to talk to any parent of a child with a life threatening or worse terminal diagnosis. As Greenberg aptly points out, parents like myself have learned the harsh lessons in life and that is that things are NOT in our control. So what happens to people like myself who have learned this truism early in life?!!! Should I just close up shop, knowing that life doesn't make sense and is unfair?! It is hard to say, but I know one thing is for certain, I do not share the same mind set and priorities as those in my life who have healthy children. I would love to delude myself into thinking that what I do impacts the future, but I know better. Which is why Greenberg feels that a pediatric cancer diagnosis permanently impacts a family's life. How could it not!?

Greenberg mentioned that he was able to technically "cure" children of cancer, and yet some of these families were not "healed." They aren't healed because like our Mattie Miracle new slogan states....... "It's not just about the medicine!" There are emotional, social, and psychological components to the disease that actually make the overall treatment extremely complicated. Whether a child survives or dies, Greenberg stated, "life that emerges as a consequence of cancer can not escape the circumstances that created it. The impact of cancer reverberates throughout time." Indeed, I couldn't have said it better myself. As the fourth anniversary of Mattie's death approaches, I can safely say, the pain, sadness, depression, and anger remains. Can I put it somewhere, certainly? I suppose I do, which is why many of you think I am highly functioning, but as I say often............ don't judge a book by its cover. Mattie's death is ingrained within me and to accept me, means to accept this simple fact. So whether this is Mattie's fourth anniversary, tenth, or twentieth, that is just a number.... it still matters and feel as if it were his first anniversary. 

The Difference between Curing and Healing: Dr. Mark Greenberg
http://www.youtube.com/watch?v=6wj6i0lijK8


I would like to end tonight's posting with a photo of the wonderful creations designed by my "friend in cancer." My friend gave me a lovely gold HOPE bracelet today, and an orange support ribbon bracelet. Notice the heart shaped charm hanging from the bracelet which reads, "together we can make a difference." Certainly she means she and me together, but she also means everyone. We can't bring awareness to such an important issue without the help of our friends, family, and supporters.

August 18, 2013

Sunday, August 18, 2013

Sunday, August 18, 2013

Tonight's picture was taken in August of 2006. This was a typical everyday scene with Mattie. Legos everywhere!!! Mattie incorporated Legos into all his play schemes, and with Legos his imagination came alive. The long Lego design here was supposed to represent an airport runway. What I also love about this photo was Mattie's big smile. With Mattie, I learned all about Legos and building outside the box. Mattie preferred to build from his imagination than from a plan. Though he could follow any Lego plan without a problem. He was, as I called Mattie all the time "our little engineer."


Quote of the day: I've reached the point where I hardly care whether I live or die. The world will keep on turning without me, I can't do anything to change events anyway. ~ Anne Frank


At first read, Anne Frank's quote may seem depressing. However, given the circumstances she was living under, she had a lot to be depressed about. Nonetheless, anyone who has lost a loved one, can probably relate wholeheartedly to Frank's sentiments! Why? Because the hardest thing to come to terms with after someone you love dies is the simple fact that the world does keep on turning. I remember when Mattie died, for me the world ended. I am not sure what I was expecting, maybe on some level I was expecting others all around me to be sad and worn down too. Mattie's death seemed earth shattering to me, so much so that I felt EVERYONE would be equally traumatized. This of course did not happen! I was stunned to see people going out to Starbuck's and buying coffee and socializing. I was also stunned to see people in restaurants laughing and being happy about living. I wanted to shake these people and let them know that while they were laughing a beautiful seven year old just lost his life!!! I couldn't wrap my head around any of this since for me there was no world. It stopped existing as I knew it on September 8, 2009 (the day Mattie died). 

Four families lose a child each day in our Country to cancer. This isn't well reported but it is a reality. I know that we live in a culture in which the vast majority gets its facts from the media! Big mistake!!! Unlike other newsworthy deaths, which frankly the media covers for their political gains and sensationalism, children are dying daily. But I bet you won't hear about this on NBC, CBS, and ABC!!! Two classrooms of children are being diagnosed with cancer daily too. But where is the media coverage???!! None of them were by my side on the day Mattie was diagnosed or the day he died. You maybe saying, why would Vicki expect the media to be there?! Well I didn't but I am trying to make a point. The point is my child's death was just as important to me than anything else the media could possibly cover. I am sure thousands of other parents who also lost a child to cancer would agree with me. Where is the justice?!

Anne Frank felt there was nothing she could do to change her reality or future events. I can appreciate her loss of hope and her feelings of helplessness. Parents who have children with cancer and worse those who lose a child to cancer, relate to Frank's helplessness. After all, how do we change our culture's thinking?! How do we get people to focus upon this healthcare crisis, a crisis in which more than 13,000 children are diagnosed with cancer a year?!!!  I have no answers, other than we just have to keep on writing, verbalizing, and advocating for the needs of children with cancer and their families. Will all my advocating bring Mattie back?! Certainly not. So why do it? The answer is I primarily do it because it keeps Mattie's memory alive. My small life keeps on turning, in the larger picture of the world, because Mattie remains a part of my life. He is in my thoughts, my writings, and my daily work. 


I am still not feeling well, but throughout the day, my lifetime friend Karen was sending me photos from Madrid. She sent me many wonderful cow photos. Some were alive and some were paintings. Why cows? Well my faithful readers know I love cows. I particularly love Holstein cows, the black and white ones. The photo I am sharing with you tonight I entitled, "olives and chocolate." Clearly Karen saw this and immediately thought of me. Though I have never thought about chocolate and olives together, now that I see it I say, WHY NOT!!!!! My two favorite things!!! Needless to say it brought a smile to my face.