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

February 21, 2015

Saturday, February 21, 2015

Saturday, February 21, 2015

Tonight's photo was taken on January 4, 2009. We were home between treatments and as you can see Mattie was resting on top of Peter. He gave a big smile to the camera to show his pleasure with the position he selected. In the background of this photo, you maybe able to see the hospital bed that was brought into our home and placed in the living room. This bed was needed to manage Mattie's recovery from his limb salvaging surgeries. Mattie was in so much pain that he really needed to be propped up in certain positions in order to be comfortable and the mattress was unique because it would inflate and deflate with air to help compensate for Mattie's movements in bed. I also noticed in this photo that Peter was wearing an orange Mattie Miracle wrist band. Our Team Mattie care community made these wrist bands for us (we had 100s of them at one time!!!) and the bands read... "Stomp it out for a Mattie Miracle." Also featured on the bands were icons of bone bugs to symbolize the osteosarcoma "bugs" that we used to explain the concept of cancer to Mattie. To this day Peter still wears this wrist band.  

Quote of the day: Either you run the day, or the day runs you. ~ Jim Rohn


Today Washington, DC was hit with winter storm Pandora. Rather an ironic name in a way, since Pandora in Greek mythology can translate into "the all gifted" or the "all knowing." In either case in mythology, Pandora unleashed havoc into the world, and I would say this storm produced a wintry mess upon DC today. The problem with weather predictions however is they are USUALLY wrong. Today's storm was probably our most significant one to hit the area yet this winter. As you can see our birds were most happy that I got up and out this morning to feed them!!!

A rather unusual sight this afternoon.... a Robin! Peter captured him in our oak tree! However, he wasn't alone. He had four friends sitting in the tree with him. But the lighting wasn't terrific, so capturing one close up was hard enough to do. I consider Robins, spring birds! So what these birds were doing out in the snow is beyond me, because clearly spring is NOT around the corner.  

Peter and I have been trapped at home for the past two weekends working. We couldn't handle another weekend like that today. So despite the weather, we went out for a little bit. If it were just me, I would have to stay home because I do not know how to drive in the snow. I learned to drive in Los Angeles and I am smart enough to know not to drive in snow. But Peter is an excellent snow driver. I don't worry about him, I worry more about the people around him who are driving. In DC a vast majority of people are like me! Which is a concern because unlike me they go out and try to drive in the snow without having the skills or the training. 

Here is a picture of the snow accumulating in our commons space. All I know is if Mattie were alive, we would all be out there today in it. In fact tonight as I was sitting writing the blog, I could see a family of three (mom, dad, and son) behind the fence you see in this photo playing in the snow. It reminded me of days gone by and it also made me realize that if Mattie were alive I would be out there living my life rather than sitting in front of a computer writing about it. 

February 20, 2015

Friday, February 20, 2015

Friday, February 20, 2015

Tonight's picture was taken in April of 2007. Around the time of Mattie's birthday. You can see that Mattie decided to decorate this bedroom door with ribbons, which acted like streamers! Also hanging on Mattie's door was a tracing he did in his second preschool class. It was a tracing of the perimeter of his entire body, which he then colored in. Above that tracing was a sign with his name on it and a symbol. It was the symbol of a Magnet. In Mattie's second year of Preschool, he was "Mattie magnet." The children were assigned a symbol that started with the same letter as their names! This would help them learn the connection between sounds and spelling. In Mattie's first year of preschool, his symbol was the moon. Which is why so many of us still refer to him as "Mattie Moon!"


Quote of the day: There's nothing more inspiring than the complexity and beauty of the human heart. ~ Cynthia Hand


I came across a website today called Griefwatch and on it is posted articles written by people who have experienced the loss of a loved one. Clearly there are different forms of grief and loss, and I honed in on the category.... the loss of a child. I saw an article entitled, How the gifts arrive, and I was intrigued by the title so I clicked on it. I posted it below because I found it very meaningful. It is written by a father who lost his eight year old son. Not only can I grasp that loss all too well, but the scene he is writing about captures the heart of any parent who has lost a child. 

This dad describes the anguish he feels over buying a Valentine's day gift for his son. A tradition that he had each year, except of course now his son is no longer alive. Yet this is a tradition that is a part of him and though he doesn't verbalize this.... what would happen if he did not buy the Valentine's day gift this year? What would that symbolize?! How would that make him feel? Would that be dishonoring his son, dishonoring his memory, and make him feel less of a dad? Yet the torture of going to a store and having to pick out a gift for your child, followed by waiting on line to check out with other parents and children fearing that they could ask you at any minute about your deceased child is beyond overwhelming. I remember it well!

It takes years of dealing with grief to know how to handle this question...... do you have children? I suppose I could tell people I have no children and spare myself having to explain the story or what happened. But in reality that would make me MUCH MORE UNHAPPY. Mattie was my child and is a part of my life and he is my story. So yes I always report I had a child, to anyone who asks me. I really feel if someone should ask me whether I have children then one should be prepared for the reality of the answer! 

As grieving parents, we all have our own traditions and ways in which we need to remember and honor our children. This Valentine's Day gift story touched my heart and I really felt this dad's anguish and admired his decision to do what he felt was in his heart to stay connected to his son. In the end it is what helps us keep the memories alive and to remember that ultimately counts!

------------------------------------------------------------------------------------------------
http://www.griefwatch.com/how-the-gifts-arrive

How the Gifts Arrive  by Mike Kleiman (mikekleiman@cs.com)

Buying Valentine’s Day flowers for my eight-year-old son is always terribly difficult. There never seems to be an arrangement suited for a young boy that also expresses profound parental love. My heart is naturally drawn toward the pink, red and yellow flowers but they certainly don’t speak the same way to my son. He’d be more satisfied with an arrangement involving a monster truck. I look at each flower arrangement that touches my heart and I think of my son; would he like this, does it shout-out his name? Most of them don’t shout-out his name so I pick something bright, sunny and cheerful...
Picking a balloon will be far less draining than the flowers. No other object better represents a child’s spirit than a helium balloon. Helium balloons - happy and fearlessly dancing excitedly above our heads - lost in an imaginary world. They bounce and sway and play innocently above our world while yearning to be set free - to fly as high, as high can be. Helium balloons come in all shapes and sizes and they are so much like our children. Selecting a balloon is easy - they all work.
Buying his valentine card tends to be a repeat of the flower episode with an added emotional twist. The loving poetry strikes emotional surges in my heart and throat. I desperately struggle to suppress my sentiment but my eyes threaten to announce my secret. The urge to become disconnected is overwhelming; like a marathon runner whose body conspires for a rest, I feel the overpowering need to settle for the next card. But the card must be true. I have to find the right card. I have to stay together long enough to find the right card. 
The truly difficult quests are now behind and I just have to decide whether to get a gift or not. I’ve given him one every year since he was born so it just wouldn’t feel right to stop now. He’d love something electronic but I don’t want to buy anything too elaborate. I truly can’t endure another difficult decision so I settle for a teddy bear like I did the previous year.
Standing in the checkout line with the other parents always threatens to destroy my delicate façade. If I actually allow myself to connect with them, to think about their love, to envision them giving these gifts to their children; I will definitely explode in an uncontrollable emotional meltdown. To sidestep this catastrophe, my mind has to lock into a mantra - pay the bill and get to the car; pay the bill and get to the car... I get the balloon safely into the car and prop the flowers so they won’t tip. I don’t need to sign the card until I’m with my son. That’s the way we always do it.
The shopping trauma transforms the drive into a complete blur. I go into a trance and rely on my mental autopilot to safely deliver me to my destination. I arrive physically intact and am relieved to be alone because I desperately need solitude to salvage my senses. The first thing I do is tidy the place up a bit. Then, I arrange the gifts. I place the flowers on the ground and make sure they won’t easily tip. With the balloon fastened to the teddy bear’s wrist, I nestle him near the flowers leaning him comfortably back. There’s a bench near my son where I sign the card.
An eternity of extreme emotions passes as my face goes from lapped hands to the sky and back to my son. I search for the words from so much to say... there’s so much to say. Emotionally drained into a calm, I prop the card upright on the slab and touch a kissed finger to his picture, which is forever sealed on his stone.
When you see the gifts adorning the stone fields, please know, “this is how they arrive.”

February 19, 2015

Thursday, February 19, 2015

Thursday, February 19, 2015

Tonight's picture was taken in February of 2009. This was the classic cupcake monster at work! Mattie was stuffing a mini cupcake in his mouth. I used cupcakes as incentives for him to comply with physical therapy. If he tried a task or took a few steps, that earned him a cupcake! I rarely got home, but when I did in between treatments, out came the baking tins. 

We honestly were never home long because as soon as we got home Mattie typically developed a fever and got sick due to his low white blood counts, which is a typical side effect of high dosage chemotherapy. The problem with developing an infection as a cancer patient, besides not having the immunity to fight it off, is that you typically can't receive more chemotherapy when symptomatic with a fever. If you can't receive chemotherapy, then you can't fight off the cancer. So it is a vicious cycle..... you need the chemotherapy, but the chemotherapy is bound to make you sick with low blood counts. Yet the trick is how to manage the infection and get the patient back to having a normal blood count again in order to receive more toxic chemo, just to make the patient sick again, etc....!  


Quote of the day: And now here is my secret, a very simple secret: It is only with the heart that one can see rightly; what is essential is invisible to the eye. ~ Antoine de Saint-Exupéry





Today has been a long work day for me. So I did not feel much like writing. However, interestingly enough I have found a wonderful file on my computer filled with little videos of Mattie. I have begun to watch them. Some days I can do this, and some days I can't. Today I found a precious clip taken on November 7, 2007. I captured this video of Mattie after he came home one day from kindergarten. He had cut out a heart in class with his teacher, Ms. Williams. You can hear him talking about it, what it means to him and who it is for! Frankly I must admit that I did not remember this moment in time at all. So thankfully I captured it, because it is darling and it speaks to Mattie's closeness to me. He and I had a very tight bond. We were very much alike in many ways emotionally and seeing this interchange reignited that memory in me tonight. Not that I did not know this, but without feedback from a little one to remind me it can be hard to sometimes believe it and accept it as reality now. The video was that confirmation. 

February 18, 2015

Wednesday, February 18, 2015

Wednesday, February 18, 2015



Tonight I attached a video instead of a photo of Mattie taken in February of 2009. It was taken during a physical therapy session on the inpatient floor of the hospital. This was what a typical session looked like with Mattie. In the lead of the session was Anna, Mattie's physical therapist. Behind Mattie were Jessie, one of Mattie's art therapists and Linda, Mattie's child life specialist. Mattie had a whole entourage when doing physical therapy. He really needed this moral support because movement for Mattie was painful and required a great expenditure of energy. So he truly needed people to encourage him, to egg him on, and to he needed an audience. Sometimes he needed people to even compete against. It just depended on his mood and the situation. Because Mattie practically lived at the hospital and we were always roaming around on the floor, all the staff who worked on the floor got used to seeing us pass by. Many would wave to Mattie. Though this video clip doesn't show it, I can assure you there were some therapy session where we were blasting ABBA's Dancing Queen on a boom box to motivate Mattie to move his body. When Dancing Queen was blaring every office door would open to see exactly what was going on in the hallway. As soon as people would see Mattie trying to do physical therapy with his merry band of followers people couldn't help but smile! 


Quote of the day: You have power over your mind - not outside events. Realize this, and you will find strength. ~ Marcus Aurelius


When I reflect on Marcus Aurelius' quote and one having "power over your mind," I can't help but think about parents who help care for their children who have cancer. Particularly I am thinking about moms, since I was a mom and today I communicated back and forth with two moms who are helping their daughters battle cancer. One mom I know very well, she is my friend and her daughter was diagnosed around the same time Mattie was diagnosed with cancer, and another I was just recently introduced to. In any case the mom I was recently introduced to contacted me because she needed some information and help. Information that I did not know but I knew that my friend Cathy could supply her with it given that I consider Cathy a guru in stem cell transplant issues. Needless to say I text messaged Cathy and within seconds she responded and literally within minutes one mom was connected to another mom. I have no doubt that Cathy was able to help this other mom, but you should know that my friend Cathy is knee deep in helping her own daughter with cancer. 

Cathy's daughter is a truly special young woman who is witty, humorous, and very introspective. She deeply cares about her family and the world around her and yet she was struck down with cancer at the age of 15 and has been in and out of hospitals ever since. She is 21 now, and hasn't had the opportunity to really live a normal life. The average 21 year old would be sulking in the corner and pitching a fit, but not Bridget. She finds a way to cope and courageously plot through her six year cancer journey. I do think having a committed and loving family by her side helps tremendously. Cathy is a steadfast mom who is focused, determined, diligent and can talk as intelligently as most medical doctors. She knows every treatment option available out there and is very familiar with the major medical institutions on the Eastern seaboard. I met Cathy and her husband George early on in Mattie's treatment phase, and I always remember that they were in awe of me for what we seemed to be enduring. But as I told Cathy today.... she is my hero, because I admire the incredible role she plays in her family's life. Despite all Cathy is balancing, she found the time to help another mom and child today with cancer. That to me leaves a lasting memory. Not surprising coming from the source, but it speaks to the way that childhood cancer unites us.  

This morning when I looked outside my window I was greeted with a "Hi" sign!!! Peter created this cutie last night in the snow. I am sure all our neighbors are enjoying this.... as I know they are enjoying watching the birds at our feeders! 














Today my good friend Mary Ann sent me a photo of the rose bushes near her home. I endearingly call these bushes.... "Margaret's" rose bushes. I like to track these bushes at all times of the year! Of course these bushes are not Margaret's. But my friend Margaret loved to grow roses. When Margaret died in June, Mary Ann was walking by these rose bushes and sent a photo of them to me in honor of Margaret. As soon as I saw the photo, I told Mary Ann that they reminded me of Margaret. So to this day, we both refer to these bushes as Margaret's rose bushes! 

February 17, 2015

Tuesday, February 17, 2015

Tuesday, February 17, 2015 -- Mattie died 284 weeks ago today.

Tonight's picture was taken in February of 2009. If Mattie was using his walker, I know that meant he was involved in a physical therapy session of some sort on the floor. Rarely could I get Mattie to walk otherwise. It was just too tiresome and painful. Walking caused Mattie to expend a great deal of energy, energy he just did not have given his intensive chemotherapy treatments and the fact that he never had time to regain strength from his limb salvaging surgeries. Of course for Mattie it was very depressing and upsetting to be immobilized and so dependent on everyone and this explained a great deal of the personality changes that took place within him as his disease took further hold of his life. He no longer wanted to engage with others, let them in his life, and he did not want to be a part of the healthy world. The healthy world did not understand him and even at age seven he was perceptive enough to know that he was different. 


Quote of the day: I was never really insane except upon occasions when my heart was touched. Edgar Allan Poe


Poe's quote seems so poignant and telling! For me experiencing Mattie's cancer touched my heart in unimaginable ways. As a human being and as a parent. Which maybe why at times while caring for Mattie in the hospital I felt like I was going insane and now while grieving the feeling remains. It is a different feeling of hopelessness and despair, but it a feeling nonetheless. We all have different things that drive us to what Poe would call "insanity." But I do agree with his sentiments that what can cause and wreck havoc on the mind and body are mostly driven by emotions.

This was the scene today from outside my window where I work! Peter went outside to shovel part of our commons area..... to clear at least a pathway to our bird feeders across the way! 






Notice the birds are waiting on the fence for Peter to fill up the feeders! These birds really rely on us DAILY!!!! We feed several hundred birds every day and I am not exaggerating when I tell you we go through 80 pounds of bird seed a week. 



Our happy sparrows in the snow!












February 16, 2015

Monday, February 16, 2015

Monday, February 16, 2015

Tonight's picture was taken in February of 2009. It was close to Valentine's Day and Mattie received this huge lollipop from one of his classmates at school. Mattie thought it was hysterical, especially since it was bigger than his head. Pictured next to Mattie was one of his nurses, Erin. Mattie decided to give Erin one of his lollipops, and as you can see, Erin held up the candy to compare sizes! Clearly no comparison to Mattie's super sized lollipop!!! Erin was an amazing nurse and one of our first nurses we experienced at the hospital. But not unlike many of the oncology nurses, Erin did not remain long at the hospital. I suspect there is a great deal of turn over because of burn out and other issues that arise. Nonetheless, I will always remember Erin because despite her youth, she was an extremely competent, caring, and intuitive individual. She helped me and listened to my feelings in and out of the room on many occasions. In addition to that, one night Mattie was having a super challenging night of pain and agitation! She tried to distract him and encouraged Mattie to draw her a picture. He did just that and later she put that creation on her refrigerator. She even sent us a photo of Mattie's picture on her refrigerator and Mattie and I were honored!


Quote of the day: Lack of compassion is just as vulgar as an excess of tears. ~ Dowager Countess Grantham (Downton Abbey)

Today I received a package at my front desk. The package was sent to me by my friend in cancer. The gift inside was very touching and it came from the Ty Louis Campbell Foundation. In fact the jewelry sold benefits the Ty Louis Campbell Foundation, which gives 100% of the proceeds to childhood cancer awareness and research. The founder of the Ty Louis Campbell Foundation lost her son, Ty, to brain cancer in 2012. She now designs jewelry to raise cancer funds and to fill the need for awareness jewelry that isn't made of rubber or plastic. 

Here is a photo of the beautiful locket! But the locket came with a lovely card! Inside the card it read.............

"I carry your heart" locket that I have worn in memory of Ty ever since my unbearable loss. The poem (see below) holds such deep meaning for me, and helps me honor the deep and undeniable love I share with my son, my greatest gift, despite losing him. The locket has since been gifted to dozens of grieving moms who lost their precious children to cancer, and I hope to be able to give many more over time. 

Inside the locket is the lovely pumpkin photo of Mattie!!! 

The card continues on...........
"My heart continues to break every day as I watch and read about each child lost to cancer over and over again. In an effort to provide just a shred of comfort to more and more moms who share the same broken heart, we launched a program that allows others to sponsor an anonymous gift to a mom who lost her child to cancer. We hope the enclosed does just that for you. Know that your child is loved and remembered by so many. To learn more visit, www.prettystore.org."


"I carry your heart" ... I carry it in my heart! by E.E. Cummings


The sentiments of the poem are beautiful and the symbolism of the locket is quite meaningful. The locket is in essence a representation of how grieving parents live their lives! Grieving parents keep their memories, feelings, and thoughts of one's child locked away from the real world. Trying to look normal, together, and perhaps shiny and golden like the exterior of this locket. But internally grieving parents carry their child's heart with them always and just like the inside of the locket, their minds are filled with memories, pictures, and things that are intangible and unforgettable. 

February 15, 2015

Sunday, February 15, 2015

 Sunday, February 15, 2015

Tonight's picture was taken on Valentine's Day of 2009. I do not typically show this photo. Instead, I usually post the photo from last night, since it is my favorite. But this photo captures the box I was describing last night. Mattie made me a hearts crown, Valentine's Day cards, and this lovely box filled with all sorts of paper crafts that he cut out for me and decorated. As you can see he also designed the outside of the box in a very festive manner. Needless to say, I still have this box and all its contents. We posed for this photo in the child life playroom and frankly if I were an outsider looking in, I would assume most kids in the hospital meet at the playroom to play and gather. But in all reality that is a false assumption! Most kids are either too ill or are dealing with a contact isolation issue (due to infections) or neutropenia (low white cell counts) and therefore the playroom in many cases is a ghost town. Yet I know whenever we could get out of the hospital room, we ventured to the playroom. It was like our escape! 


Quote of the day: It is good to love many things, for therein lies the true strength, and whosoever loves much performs much, and can accomplish much, and what is done in love is well done. Vincent van Gogh


It was another day of being glued to the computer. I have several projects on my 'to do' list, one being a philanthropy type application that is due at the end of the month, which I need Peter's help with. So despite being a three day holiday weekend, it is NO HOLIDAY for either of us. With the Foundation, I am always working around the clock, and Peter in essence works two full time jobs. When he is done working his real job, he comes home and works on the Foundation. So down time really doesn't happen for us. Any one who runs a small business knows exactly what we are talking about, which is most likely why small business owners are frazzled, worn out, and carry a great deal of liability and stress. Of course the main difference is as a non-profit do not share in any of the profits or benefits that we are working so hard to generate.... it all goes to the community. 

Yet with each application we work on and each document we generate, they overwhelmingly illustrate how much we have been able to achieve in just five short years on a shoe string budget. People always complain that they don't have the money to accomplish what they want to achieve. Of course money helps!!! All organizations want it and could use it, but it should not be the excuse for lack of productivity! Sometimes it is having a vision, working non-stop, and putting together a group of committed and passionate people (like we have done with our psychosocial researchers and clinicians) who share your vision which enable all things to become possible.