MATTIE MIRACLE VIRTUAL WALK WAS AN $110,000 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

October 8, 2010

Friday, October 8, 2010

Friday, October 8, 2010

Tonight's picture was taken in October of 2007, at John's house, a preschool friend of Mattie's. John had a wonderful Halloween party, and as you can see Mattie was dressed up as an air force pilot. Pay close attention to what Mattie was doing here! You will see that he was holding a roll of toilet paper, and transforming someone into a mummy! Take one guess who he was wrapping up? If you guessed me, you would be correct. In fact, myself and Julia (a friend and preschool mom), were the focus of attention at the party, and before we knew it, we had children surrounding us and covering us from head to toe. Mattie was on a mission that day, and as always, I was his side kick!

Quote of the day: I'm loving you, I know you're there yet I'm not sure where you are, are you sitting here beside me, or were you the bird that flew? I feel the wind blow in my ears, and I'm wondering if it's you. Are you reading over my shoulder? Are you holding my hand right now? I want to tell you I love you, I'm not sure if I know just how. I can feel you wiping my teardrops, and asking me, please, not to cry. But I'm missing you, loving you so much. And I'm wondering why you had to die. ~ Brandy Sively

Today was a busy day from start to finish! As I was getting ready for my counselor licensure meeting this morning, I received a call from my doctor's office. They wanted me back in for more testing and antibiotics. I hadn't factored that visit into my day, but clearly because we are going away tomorrow, there is no way, I was going to take any chances. After a four hour licensure meeting, one of my board members asked if I wanted to go out to lunch with her. In the days before I experienced cancer, I most likely would have said no. No, because I would have been focused on heading to complete my next task for the day, rather than stopping to further connect with someone. However, despite a full day, I did stop and I did go out to lunch. We had a lovely lunch together and we got to know each other better. We both are cancer survivors, and have an understanding and appreciation for one another. My colleague also makes her own jewelry, and I have always admired her work throughout the years. In fact, I bought one of her pieces years ago, pink pearls with sterling silver, and it is one of my more unique and special necklaces that I wear on occasion. Talking about her jewelry today inspired me to learn how to do this. I think it would be very therapeutic and would be a wonderful way to create pieces for the Foundation.

After lunch, the chores began. I had to come home and capture Patches, our cat, and take her to the vet for boarding. Nothing was simple about that process, as she was playing hide and go seek with me, and refused to get into her cat carrier. I finally retrieved her and we were on our way. The vet simply LOVES Patches and as soon as she enters the building, she becomes calm and relaxed. Not surprisingly, since this was her second home while Mattie was undergoing cancer treatment. From there I ran to the doctor, the pharmacy, and then back home to contend with laundry, dinner, and packing.

This is the first big trip that Peter and I have taken since Mattie died. It is a very challenging feeling to know we are going on a family vacation, and our most energetic and important member is no longer with us. There is definitely guilt associated with leaving and I continue to try to put this into context. Peter is coming with me for a week, and during that time we will be driving to see the Grand Canyon and Sedona, Arizona. He then will return home and I will remain in Los Angeles for the second week with my parents. We appreciate your good wishes on our trip and the next time you hear from me it will be from Los Angeles.

October 7, 2010

Thursday, October 7, 2010

Thursday, October 7, 2010

Tonight's picture was taken in October of 2007. Mattie was about five and a half years old and was in kindergarten. Our October tradition was venturing to Butler's Orchard in Maryland to pick a pumpkin literally off the vine in a pumpkin patch. A wagon full of hay, pulled by a tractor, would take us to the patch. I am not sure which part of this adventure Mattie enjoyed more, the wagon ride or the picking part. Mattie and I were always in search of the perfect pumpkin, and we would drive Peter crazy as we could spend thirty minutes or more searching through a small patch! In fact, it is hard for me to look at pumpkins now without thinking of our time together.

Quote of the day: Love like ours can never die! ~ Rudyard Kipling

Rudyard Kipling said it best! The love Mattie and I shared with one another was very special, very close, very unique, and will never die. I have the memory of this love forever in my mind, however, on some days the memory of this love just doesn't seem like enough. Or perhaps it is having experienced this love and then having it taken away from me in such a painful way that makes living without this bond seem almost impossible. I know just what I am missing, and all the future opportunities I will be missing as well.

I had the opportunity to spend some time with my friend, Junko today. Many of my faithful blog readers will recall that Junko visited me on a regular basis at the Hospital. When she came she always brought me something wonderful to eat. I always looked forward to her lunches and I can recall amazing lobster and other fresh seafood salads and sinful chocolate treats. But her generosity did not stop there. She would bring all sorts of gifts for Mattie and never left without giving me a back and neck massage. I have to admit that during my days in the hospital I was so stressed out that touching me the wrong way, could produce intense pain. Afterall, I slept at night (if you call three hours sleeping) in a chair for weeks on end. However, by the time Junko finished with me, I felt almost like a whole person again, ready to take on another round of intense stress from Mattie's treatment. As I told Junko today, I have the best sock collection now thanks to her. Over the course of Mattie's illness, she would bring me incredibly cozy and warm socks. In addition, she would bring me thermacare heatwraps, that I would stick in my jacket pockets because I was always freezing in the hospital. These are acts of kindness, love, and compassion that I will never forget.

Junko and I walked together for about an hour and we covered 2.8 miles. The irony is the time went quickly and I wasn't even focused on walking because we talked the whole way through. It was a fabulous way to exercise and catch up and reconnect. When I told my lifetime friend, Karen, that I was walking with Junko today, Karen wrote me back a very funny e-mail. She basically wanted to know if I have been actively recruiting friends to join my walking club, and whether I was giving out t-shirts for participating. It was the way she said it that had me cracking up!

After our walk, we went out for tea and scones and continued talking. In August, Junko and her family went to England, and along her journey she brought me back a gift from Buckingham Palace. I was very honored and touched, and it is a travel size jewelry case, which Junko felt would be a great way to transport some of Mattie's beautiful jewelry on my upcoming trip. The case has a beautiful rose fabric on the outside, and seems to capture my love for flowers. However, upon further examination of the fabric, it incorporates hidden profiles of Queen Victoria and Prince Albert within the rose pattern. Very clever! So it was a morning of walking, talking, and sharing.

Later this afternoon, I went to the hospital to visit Mary, Ann's mom. By the time I got there, she had completed physical therapy and was back in bed, looking exhausted, and yet unable to shut off. We spent a good part of the afternoon chatting. However as the day was wearing on, I could see that Mary was growing more and more uncomfortable. I deduced that she was feeling very dry and wanted some sort of moisture on her face and hands. If you have spent any significant amount of time in a hospital, then you can relate to how Mary was feeling. The air in a hospital is not only cold, but it is very drying. It literally sucks all the moisture out of your body. So I looked around Mary's room for lotion, and I highly disliked the smell of the hospital lotion. So instead I went rummaging through my purse and pulled out a rose fragrant lotion. Mary appreciated the attention and my goal was to make her relaxed and comfortable. It never happened. As the evening set in, I noticed she was laboring to breathe, and it looked like she was gasping for air. In all reality seeing this reminded me of Mattie instantly. I called in Mary's nurse, and Mary was given some oxygen, but in the mean time, Mary's nurse paged the respiratory care department for a consult. Minutes later, just as Mary was beginning to settle down (naturally this is always the way in a hospital!), in pops a respiratory therapist. Now I admit I am biased because I couldn't take ANY of the respiratory therapists assigned to Mattie at the hospital. However, Bernadette was quite different. She was knowledgeable, concerned about Mary, and more importantly had vast experience and compassion for helping others. In fact, she told me she worked in the ER and trauma units for many years dealing with respiratory care issues, and now would like to focus solely on working with older adults in a hospice setting. She began to tell me about the respiratory care issues of those who are dying, figuring I wouldn't know. Inside I was screaming, because I wanted to say, "believe me, I know!" But here is the interesting thing about Bernadette. When she entered the room, she and I looked at each other, and for some reason, we both seemed to recognize each other. In fact, Bernadette greeted me by saying, I KNOW YOU! After Bernadette gave Mary a breathing treatment, she came up to me, shook my hand, and said that she and I are kindred spirits and that is why we connected tonight. It was a chance encounter, but in a way a very uplifting and meaningful one.

As I head into Friday, I have my third meeting for the week, a counselor licensure board meeting. After that I have to bring Patches, our cat, to the vet to be boarded while we are away, and then begin packing. It seems like a non-stop week of sorts, but as always I appreciate you all sharing it with us.

October 6, 2010

Wednesday, October 6, 2010

Wednesday, October 6, 2010

Tonight's picture was taken in March of 2009. Linda (Mattie's childlife specialist) snapped this picture of Mattie in the childlife playroom. Based on Mattie's activity, I can tell it was chemistry day on the floor. The Georgetown Chemistry Club came to visit the kids every friday, and they would also have a neat experiment to do with the kids that captured their attention. Mattie loved the experiments and he got along famously with the president of the chemistry club. That particular day, they were making ice cream, using dry ice. As you can see in this picture, Mattie was neutropenic (or his white blood cell count was low, and therefore he was susceptible to infection) and had to wear a mask in public spaces. I must admit I was vigilant with Mattie on a lot of things, but mask wearing and gown wearing wasn't one of them. Having cancer was daunting enough, living in a bubble was just over the top for me. Instead, I would be cautious to what I exposed him to during the times he had low white blood counts, but I couldn't see holding him back with masks, gloves, and gowns. His life was limited enough physically! What I love about Linda's picture was it captured Mattie's curiosity, his love for doing hands on activities, and really his joy in learning (even when so sick and not feeling well!).

Quote of the day: No light that was born in love can ever be extinguished. ~ Darcie Sims

I woke up this morning and to my dismay, my cell phone was not working. That may not seem like a major issue to some of my readers, but for me, this is a serious problem. From my days in the PICU, my cell phone has been my life line and my mobile support network. Though our cancer crisis is technically over, the aftermath is that I still live parts of my life in crisis, and I believe it will take a great deal of time to normalize (if that is even possible). With my phone not working, there are at least three people that I need to alert to this otherwise, my lack of response during the day will cause great panic in them. So I let Peter, Ann, and Karen know that my lack of emails and text messaging was a result of a blackberry issue, and did not signify that something was wrong with me.

At 10:30am, I was invited to Mattie's upper school campus, to attend their weekly chapel. Meredith, Tamra's daughter, was going to be giving a talk at chapel and I knew she integrated Mattie into her talk somehow. Meredith and her sister, Louise, got to know Mattie when he was battling cancer. They sat and played with him many times, so Peter and I could go out and take a break from our caregiving roles. I believe it was through these playful moments that Meredith and Louise learned a great deal about life, ironically from a seven year old. I wasn't really sure I absorbed that message at the time, but after Meredith's talk today, I can say this did sink in. I appreciated Meredith's talk SO much, that I asked her to send it to me electronically tonight. I want you to experience what I heard this morning. Frankly, I know Mattie profoundly changed my life, but hearing these words out of a 17 year old made me pause. Meredith captured in a most eloquent way the manner in which Mattie has changed her world view, and better yet, through Mattie she has discovered that life's true beauty is experienced in helping and being there for others. Though her words are powerful, her delivery was memorable. She was witty, charming, humorous, and serious all at the same time, and what I noticed was her style captured her audience's attention.
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Meredith's chapel talk


Good morning my name is Meredith Bentsen and I’m a senior. If it weren’t a Wednesday, I’d be telling you to sit down right about now. But it is in fact Wednesday, and you’re sitting down so that takes care of that.

So anyways, before I went on that tangent and did the cliché chapel introduction, a parable was read. This parable, formally known as the parable of the workers in the vineyard, is a pretty simple one to understand.

One guy works hard, the other doesn’t, but both get the same amount of payment. The harder working guy gets upset because he thinks he deserves more, and God says that the payment was good because every person is created equal and that if the hard working guy wants to be a good person, he’ll live this lesson.

Easy right? Well yeah, it’s easy to understand, but it isn’t always easy to follow. We are fierce competitors, which can be a very good trait to have. You always hear about those kid geniuses that skip like five grades, just because they can. But then when they’re doing graduate research instead of going to prom or making friends, they often feel unfulfilled and depressed, even though they may have developed an amazing cure.

Accomplishing things is great, but if you don’t step back every once and a while to appreciate everything and everyone that you have, life is worthless.

Before late 2008, I had not learned to balance competitiveness and being thankful. My competitive nature started over seventeen years ago. I competed with my mother’s doctors throughout the labor process. I was due in August, but I wanted out early. On July 3, 1993, I tried to kick myself out. I kicked my mother so hard that I broke one of her ribs. Ironically I was born two weeks late on August 16,1993. On my birthday, I really wanted out. I even broke my collarbone being born because I pushed myself forcefully through too quickly.

This competitiveness became a pattern in my adolescence. A couple of years after the “birthday brawl,” I broke a bone yet again when my sister and I were racing to the kitchen for cut up hotdogs and broccoli with cheese on top, our gourmet lunch staple. My sister said she didn’t mean to shut my finger in the door but I’ve always thought differently.

At age twelve, I broke my leg in a dance off with my cousins. I spent New Years of 2006 in the emergency room of the only hospital in McCallen, Texas.

Fast-forward three years to my sophomore year. I was a fifteen-year-old battling trigonometry and scientific notation. I hung out with friends on the weekend and went to school during the week. I did clubs, and played sports, and life was pretty good, but I always felt like something was missing in my life.

In the winter of my sophomore year, I met Mattie Brown, known fondly to my sister and I as Matticus Brownus. As many of you know, Mattie Brown was a kindergartener at school who battled osteosarcoma, a severe form of bone cancer. My sister and I babysat and became friends with Mattie for a number of months during 2008 and 2009.

Usually I’m uncomfortable with sickness and people in pain, but this was different. Even in the most excruciating pain and treatment, Mattie remained a loveable and laughable child.

Mattie Brown died on September 8, 2009. He was seven.

Mattie was a fighter; he was a light in this dark world. I didn’t realize, however, until his ceremony, how much he taught me. Slowly but surely, Mattie unraveled my tightly closed heart, and revealed a new attitude towards life.

Those nights of playing in the tipi tent, and days of looking for Easter eggs, sharing jokes, and outsmarting me every time gave me a appreciation for one of God’s greatest gifts: companionship.

Amiss every assignment and task I had to compete for those truly few months, Mattie gave me a light in the tunnel. Seeing a mere child in such pain with such demeanor and charisma changed me.

I believe that Mattie was a gift from God, sent to make me realize that there’s more to life than competing against someone or something, and that the special people around you won’t be there forever.

While Mattie and I shared a fierce competitiveness, he fought with the most dreadful and heart-breaking disease in the world, while I took down opponents on the squash court, his ability to fight while remaining a happy child was amazing.

One of my favorite songs is “Give Me Your Eyes” by Brandon Heath. Disclaimer: it’s a Christian rock song, but I like it anyways. The lines that most stuck out to me were in the chorus when he sings “Give me your eyes for just one second, give me your eyes so I can see everything that I keep missing give me your love for humanity.”

I think that God sent Mattie to the world to open my eyes and the eyes of others. He helped me see the true meaning of life: not to be focused solely on succeeding but on loving one another and loving God.

Every morning when I get out of my car, I take a minute to look at a very special charm on my keys. It is a simple one, just four letter beads. But what the letters mean is most important to me. The letters MMCF stand for the Mattie Miracle Cancer Foundation. A foundation founded by Mattie’s parents, Dr. Victoria Sardi and Mr. Peter Brown, to try to educate people about childhood cancer and to lobby congress for more funding for childhood cancer. Every morning when I look down at those letters, I remember to appreciate everything and everyone that I have. I remember what Mattie taught me, and that he is still with me everywhere I go and with everything I do.

Seniors, class of 2011, my peers, and my friends: Next year we will be freshmen yet again. But thankfully, that’s nine months away. Don’t take these months for granted. Try something new at school, make friends with someone you’ve never talked to before, appreciate everything that we have here before we are handed diplomas and sent on our way. Nine months seems like a long time, but it's going to go by before we know it. Embrace this community before you have to leave it.

And to everyone, if we all open our eyes even for “just one second” as Brandon Heath sings, we can see what God wants us to see. A world where being the best is loving the most, and winning is helping someone else see the light.

Amen
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After Meredith's chapel talk, I stayed after for a while and had the wonderful opportunity to chat with Joan Holden (Mattie's head of school), Larry Jenney (Mattie's assistant teacher, who now works at the upper school and is an assistant head football coach and is the assistant director of the summer camp program at the school) and Dave Holm (a major Mattie supporter and head football coach at the St. Stephen's and St. Agnes School). Dave and I landed up in tears together, as we reflected on the fact that we will never be able to see Mattie attend high school. Mattie will never be like one of the young men I saw in attendance at chapel today. That is a harsh and painful reality, and that was enough to set me off, and Dave as well. I found it extremely touching to hear how Dave and Larry were touched by Mattie's life and I so appreciated their time and sensitivity today. You should note that Dave wears Mattie's wristband (that was created for the 2009 Walk) everyday, and it has changed colors from orange to yellow from such good use. I also had the opportunity to chat with Mary on campus as well. Mary was Mattie's technology teacher and many of my faithful readers may recall that Mary came to the hospital on a regular basis to have computer time with Mattie. These individuals made coming back onto campus today meaningful, and I am touched by their commitment to keep Mattie's memory alive. You should also know that when I asked Joan if we could use the campus again this year for a Cancer Walk, her response was that it was the school's honor to participate in such an important event! This continued support means a great deal to Peter and I.

I had lunch today with my friend Mary Ann. I met Mary Ann in graduate school and have remained friends throughout the years. Mary Ann lost her mother to cancer this July. Though clearly our losses are different, we do have similar feelings on many issues. In a way cancer has forced us to see clearer and to value people for who they are, despite the differences we may share. I can see that grief has left us tired all the time, emotionally drained, sad and depressed, challenged when engaging with the outside world, and constantly seeking the safety and security of certain people in our lives. We had a fascinating conversation about religion and God and we both came to the conclusion that God loves us whether we attend church each Sunday or not, and he loves us regardless of the faith we choose. I think it is people who like to interpret religion who place guilt upon their followers, but I personally feel that God loves all of us, and he doesn't care whether we worship in a church, temple, or mosque. But I believe it is our actions, behaviors, and how we treat one another that matters to God. Through cancer, Mary Ann and I have learned about our families, and the simple fact that such a disease doesn't always bond people closer together. In fact, it can tear families apart, and without understanding, work, and sensitivities, these connections can be permanently damaged. However, we both have discovered our need for gardening and connecting with flowers and natural beauty. I do not think this is happenstance, I think this is a direct response to experiencing death. Seeing, hearing, and smelling death in someone you love are traumatic, and in order to try to re-engage with the living again, seeing natural beauty is almost imperative. After lunch, Mary Ann showed me her mom's house in Alexandria, and we chatted about the beautiful flowers that she and her mom planted at the house over the years. It is hard to say good-bye to a family home, and the feeling of leaving the emotional connection of your loved one behind is heart wrenching.

After lunch, I met up with Peter to solve my phone crisis. He took me to the AT&T store to replace my blackberry. The poor salesperson did not know what hit him today. He was trying to get me to move into the 21st century with an i-phone or a touch screen. Forget it! I told him I wanted the equivalent to my current phone. So by the time he realized I wasn't budging, he started the transaction, and transferring my data. He then asked me if I was aware of the fact that I produce over 1000 text messages in one year. Since I have an unlimited plan, I wasn't sure where this was going. He seemed curious to know who I was talking to you, and I then retorted back that...... I couldn't be the only person who walked into the store who generated a lot of text messages. Any case, he transferred things onto the phone and I when I tried to use it and I couldn't get it to work. So he assumed I was some sort of clueless wonder and took the phone and tried it himself. He then said to me that the phone responded slowly because I had TOO many text messages stored on the system. Well that did not sit right with me, and I said to him I am not technologically savvy, but shouldn't the new phone respond quicker than my old phone? My old phone had NO problem with storing my messages. His manager came over and heard this dialogue, and before I knew it, the phone he was selling me went into the trash bucket and a new phone came out. My joke is I went through three cell phones in just one day. Needless to say, he got the point, I wasn't leaving that store without a functioning phone.

At 6pm, Peter and I attended the Mattie Miracle Cancer Foundation board meeting. This is an eight member board and despite busy schedules everyone either attended the meeting live or on conference call. I appreciate the commitment of these professionals, and I am learning to manage being on the phone with groups. This is not a format I prefer for communication, I much prefer live contact where I can see someone's face and determine how they are feeling and connecting with others. Peter did a great job keeping us organized and setting our agenda. I tried to highlight for the board some of the psychosocial interests I have for the Foundation and gave them an overview of my visit to Georgetown University Hospital yesterday. They liked this direction and helped me flesh out some of the other ideas I have been brainstorming. I will be sharing them with you soon as I begin to work on them. Needless to say, it was a productive meeting and I appreciate the board's input and suggestions. I also appreciate that several of the members are also looking out for my emotional well being, so that I do not take on more than seems physically and psychologically possible.  

October 5, 2010

Tuesday, October 5, 2010

Tuesday, October 5, 2010 -- Mattie died 56 weeks ago today.

Tonight's picture was taken in March of 2009. I selected this picture because I wanted to show you, or remind my loyal readers, the type of leader and charmer Mattie was. This was a scene from a typical physical therapy session for Mattie. It was not unusual for Mattie to participate in therapy with a loyal following. In the front row you can see Brandon, Mattie's big buddy (who even sang and dance to ABBA for Mattie, now that is a friend!), and Meg (one of Mattie's favorite childlife interns, who was Mattie's racing buddy and knew how to pull him out of some major funks). Right next to Mattie was Mary, a wonderful childlife volunteer. Mary was a force too, and literally you needed to be bold to handle Mattie. On the other side of Mattie was myself! As you can see the praying crane origami mobile came with us as well. It was what made Mattie's IV pole stand out from others, and the cranes were a conversation piece as we traveled through the hallways. The fifth floor got used to our ABBA sessions, and at times we had people sing and dance along with us! So clearly there was a great deal of pain in fighting cancer, but also through the battle, we met remarkable people who helped Mattie and I in extraordinary ways.

Quote of the day: A wife who loses a husband is called a widow. A husband who loses a wife is called a widower. A child who loses his parents is called an orphan. But in Yiddish they say there is no word for a parent who loses a child. That's how awful the loss is. ~ Jay Neugeboren

It is hard to believe that today signifies the 56th week of Mattie's passing. How could all this time slip through our hands and yet it seem so fresh to us? This quote says it all! There is NO word to describe a parent who has lost a child. It simply is not natural, and worse it is so devastating and painful, that there is no word in the English language to capture the feeling! I couldn't have said it better myself. In addition to reflecting on the loss of Mattie today, I also have to pause and reflect on Ann's dad who died one year ago today. As I was in shock last year after Mattie died, and running on pure adrenaline (from 24 hour, 7 day a week care of Mattie for 15 months), I needed another crisis to move to in order to function and focus upon. Ann's dad died about a month after Mattie, and helping her with her dad's care right after Mattie died was my coping mechanism. I am not saying this was an effective way to handle my grief, but it is what I did and how I managed living day to day. My participation also seemed natural based on the closeness that Ann and I developed in her role as our Team Mattie coordinator. The unfortunate irony is that through helping each other through Mattie's death, and her dad's death, this brought us closer together. So on this Tuesday, I pause and think about my Mattie, and Ann's dad, Sully.

I woke up this morning after a horrible night of sleep. I was up and down all night and couldn't get comfortable. So I knew I had to make a doctor's appointment today. However, the only time the doctor's office could see me was 45 minutes before my meeting at Georgetown Hospital. I wasn't thrilled by this, but I know my health is important, and when I feel this way, antibiotics are the only thing that helps. The logistics of getting from where my doctor is at one hospital to Georgetown Hospital in this tight time frame is literally mission impossible. When I got to my doctor's office, I saw her new nurse practitioner. When she entered the room, she commented on my purple sweater and how she felt purple was my color. She continued on about colors, and her warmth caught my attention. I later learned as we continued talking that she was an adult oncology nurse at Georgetown University Hospital. It figures, she had that special quality about her. She then asked me why a person who lives in DC, goes to a VA hospital. I explained it was a long story, I told her Mattie was born at this VA hospital and went to school in VA. But then I broke it to her that Mattie died of osteosarcoma. She was saddened to hear this news, and then began to talk with me about this loss. She said that losing a child is NOT a loss one ever gets over, and she couldn't get over what I have been through so far in my life. As I was going to get off the examining table, she grabbed my hand, helped me down, and said that I deserved to be cared for in a special way. Needless to say, I was deeply touched by her concern and empathy, but frankly it is the empathy that only could be given by someone in the medical profession who understood the battle I faced.

After this appointment, in which I secured antibiotics, I jumped into the car and drove to Georgetown University Hospital. I am usually not adventuresome at trying short cuts, since I am directionally challenged, but today, I moved beyond my comfort zone, and navigated my way. I must confess I have watched Peter enough over the years, since he is outstanding at getting from point A to point B in the most direct manner. Today, even Peter would have been impressed by me. I did get to Georgetown late, but I had sent Mattie's social worker a message alerting her of my delay. When I got there, Dr. Shad (the director of the pediatric HEM/ONC clinic, and the doctor who helped Mattie die with some sort of peace), was just arriving to the Hospital. So it was good timing. I met with Dr. Shad, one of the pediatric psychiatrists, Mattie's social worker, the lead pediatric social worker, and the head of the pediatric art therapy program at the Lombardi clinic. We went through my handouts, I showed them the actual psychological instrument (or questionnaire), and we discussed how this instrument is currently being used at other facilities. It was a very productive 90 minute discussion, and I felt good to know that Dr. Shad felt that I explained the instrument in a succinct and effective manner, so much so that it made it very easy to see the importance of having such a screening instrument. The mental health team will discuss their thoughts about my presentation later in the week, but I felt as if I did accomplish what I set out to do today. In addition, Dr. Shad and I discussed other ideas I have to help support families psychosocially who are touched by cancer. I appreciate her openness to brainstorm them with me, and for also being so supportive of the Foundation.

Later today, I went to go visit Ann's mom, Mary, who was admitted to the hospital. Having spent a great deal of time with Mary during her last hospitalization in January, I am very familiar with her needs and the pace of things at the hospital. In a matter of hours, Mary was visited by so many different teams of doctors. However, she was tired and wanted to sleep. I tried waking her up a couple of times, but had no success, until one young doctor came into her room. She happened to like this doctor when she met him in January, and until this day she can recall his name and his demeanor. When I told her that this doctor walked in the room, out of a deep sleep, her eyes popped open and she let out a beautiful smile. This spoke volumes to me about the power of the human connection. Mary complied with what was being asked of her because she developed a rapport with this doctor. However, he remembered her as well and asked specifically to work on her case this week. So it is mutual admiration. I also met another team of doctors today, who I fell in love with. This team was from palliative care division. As Dr. Shad has educated me, palliative care doesn't mean end of life care. It can, but what it really means is holistic care. Care in which every aspect of the person and his/her life is taken into account. What a concept. This particular doctor sat down with Mary and I today, and he really wanted to get to know her, and by the time he was finished I asked him how on earth he manages to deal with the perspective of other medical professionals, who typically focus upon their one specialty or part of the body. We both laughed, and we came to the conclusion that holistic care is vital, because in understanding the whole person, you can also have a better perspective of the presenting problem. He and I were on the same page. As I was sitting with Mary today, she told me that I should have been a nurse. She feels that I have the skills necessary to perform this job. Since I deeply admire Mattie's nurses, I take this as a high compliment. But between Ann and I we had Mary covered today. Transitioning to a hospital is a major ordeal for anyone but especially for an older adult. Mary needed the support of managing all the doctors who came in to examine her, and the host of other things she was bombarded with. I always feel for those patients who are brought to a hospital and are asked to manage this daunting task alone.

Needless to say, I visited three hospitals today, and it has been a very full day. I continue to feel ill tonight, and I am hoping that sleep happens. Tomorrow morning, I will be heading to Mattie's upper school campus to their weekly chapel. Meredith, Tamra's daughter, is a senior and is going to say a few words to the school community about Mattie. So there is no way I would miss that opportunity. Tomorrow evening is our Foundation board meeting, so the meetings continue on for me this week. I appreciate so many of you who wrote to me to wish me luck today!

This evening, in the midst of writing the blog, my friend, Tanja, has been text messaging me back and forth. She is trying to come up with more natural ways to help my physical ailments. I appreciate her time researching different remedies, and most of all, in her last message, she stated the importance of taking care of myself because I am needed for so many different reasons by so many different people. I am not doing justice to her messages, but it means a lot to hear how she feels. It takes courage and also a willingness to be vulnerable when you tell someone how you truly feel.

I would like to end tonight's posting with a message from Mattie's oncologist and our friend, Kristen. Kristen remembers us each Tuesday, and clearly you can see that we have a special connection with her. Kristen wrote, "It was nearly one year ago that we collected in Georgetown to celebrate Mattie's beautiful life. So much has happened in the last year that has changed the world...and Mattie is one of those things. The ripple effect of his life and his courageous fight has continued to touch lives far removed from the hospital, his school, and this city. States and entire countries away, Mattie is making his cause known...even today, on this Tuesday. Thinking of you on this Tuesday and everyday. Enjoy your trip out west! "

October 4, 2010

Monday, October 4, 2010

Monday, October 4, 2010

Tonight's picture was taken in March of 2009. It was a nice spring day, and we wanted Mattie to get outside and have some fresh air. Peter and I strolled with Mattie to the Washington Mall, where the reflecting pools are located. The birds were in their glory that day, and unlike my usual trips to the Mall when I would bring bread or crackers, that day I forgot. However, there was a man and his son feeding the birds. The man could see that Mattie also wanted to participate, so he was nice enough to hand Mattie several slices of bread. As you can see Mattie had quite a flock around him including seagulls and mallard ducks! You can see the smile on his face with this special bird turn out. The funny part about Mattie and feeding the ducks was Mattie always loved eating the bread himself. He would usually eat a piece, and throw a piece to the birds. He was very entertaining to be around and I miss his energy and his infectious smile. In fact, if I think about it enough, I can easily recall Mattie putting his forehead against my forehead, and he would smile and stare into my eyes. He would do this often with me, and I miss those tender moments.


Quote of the day: God is closest to those with broken hearts. ~ Jewish Saying

Tonight's quote makes me stop and wonder. When I read it, my first reaction was..... well then, GOD MUST BE VERY CLOSE TO ME! But then I thought about the quote some more and two things seem evident. Perhaps God is close to those with broken hearts, like myself, because his help is truly needed. Almost a level of divine intervention is needed when you have experienced and survived such a traumatic event. The other way I look at this quote is that through one's own individual suffering, it brings you closer to God. Not that I recommend this at all, but having a broken heart, forces you to re-evaluate your life, your priorities, and how you live your life. It has caused me to stop and spend more time listening to friends and it has caused me to want to connect more deeply with those around me. In a way these are qualities I attribute to a higher power. I am in no way equating myself to God, but what I am saying is that through the actions and behaviors of connecting with others, it enables me to become closer to God.

I had the opportunity to meet with Christine today for lunch. Many of my blog readers know that Christine is Campbell's mom, and Campbell was a very close kindergarten pal of Mattie's. While Mattie developed a friendship after school with Campbell, I developed one with Christine. Christine and I always related to each other because we both worked and also were full time moms. It was a balancing act that on the best of days seemed challenging. There were a couple of afternoons, I recall, when I was lost in paperwork, and knew I would never make it to the school pick up line in time. On those days, I called Christine, and she would pick both boys up and then meet me on the school playground. I will never forget those days, or knowing that I had someone reliable and trustworthy to call on for help.

However, the point to my story is that I know the stresses that Christine must feel now as she balances work and her family, and in a way, I am happy that I could give her an excuse to take an hour or so off, to just meet, have lunch, and chat. Without these moments in life that get us to stop, we would just continue working, and in the end life wouldn't be as meaningful. We had a delightful and tasty lunch, as Christine introduced me to a Lebanese restaurant I had never been to before. We caught up with each other from where we left off about two weeks ago, and we even chatted about the Matisse and Picasso project that I would like to do for Donna's (one of the kindergarten teachers at Mattie's school) classroom.

When I got home this afternoon, I found that I was falling back into my weekend slump. I can always tell when this is happening, because I can devour chocolate in a matter of minutes. So instead of eating half of a chocolate factory, I decided to walk. Mind you it was cold and rainy today, so I decided to use our complex's treadmill. When I walk, I disengage from the cell phone and the computer. In a way, I view walking as my time. I walked 2.7 miles today, and during that 40 minute time period, I even began to jog on the treadmill. I only did that for four minutes, because I am still trying to build up some sort of stamina from years of living a sedentary lifestyle. Nonetheless, after walking, I felt a bit better, and was able to continue to prepare for tomorrow's meeting at the Hospital in which I will be introducing the psychological instrument I wrote about previously on the blog. However, as I write tonight's posting, I have begun to feel as if I am coming down with one of my many long standing medical issues. This of course is concerning since I have one meeting after the other this week, and then I am scheduled to travel on Saturday. So think good thoughts and please send them my way. I will give you the update tomorrow on the meeting and its outcome.

October 3, 2010

Sunday, October 3, 2010

Sunday, October 3, 2010

Tonight's picture was taken in March of 2009. Mattie was home from the hospital between treatments and playing in his bedroom. Despite not having the strength to walk much, that day he found a way to stand up, and decided to get dressed up like a knight. Mattie's cousins sent him the knight gear, and he always enjoyed playing with it. When Mattie was a knight, I was usually the person in the play scheme who felt the blow of Mattie's sword! As I look at tonight's picture, I can actually see components of Mattie's room. I can see his book shelves and computer (which he rarely used, since electronic things did not fascinate him as much as building and creating). The sad part is I can't see any of these things now in Mattie's room. All I see is bins and boxes, piled up and blocking off the things I once saw. It is as if someone has moved into his room and yet as forgotten to unpack. The sad part of course is the boxes are the remaining pieces of our lives with Mattie, which make them very difficult to touch.



Quote of the day: In time we can accept a great loss if we have somebody loving us through it. God sends friends and companions to love and support us. ~ Robert Schuller


Based on the difficult way I ended my day yesterday, that mood continued to follow me through the morning. Fortunately between Peter and Ann, I found a way to pull myself out of how I was feeling and I  began my day by working on a handout of materials to bring to Georgetown Hospital on Tuesday. I had started this document earlier in the week, but needed to complete this task today. As tonight's quote accurately reflects, there is NO possible way I could cope with such a devastating loss without the love and support of people in my life. It makes a big difference on down days to hear from those I am close to that my presence is important, that what I feel and think matters to them, and most of all that they understand why I am upset, sad, or down.

I met up with Ann this afternoon, and we went for a walk in her neighborhood. We managed to walk 2.6 miles! It was a cool and overcast day, and despite that, I walked. This is a major change for me, because even a week ago, I would have looked outside and most likely would have thought there is no way I feel up to walking, and instead would have remained sedentary. I do find that walking does impact how I feel about myself energy wise and it does wonders for me emotionally. So for now, I am walking!

After our walk, Ann's daughter, Katie showed me her new dress that she will be wearing to an upcoming party. She wanted my two cents on it, and it was easy to give it to her since it is one of my favorite colors. The irony about Katie, who is now 12 years old, is in just one year's time, I have seen her be transformed from a young girl into a teen right before my eyes. It is almost hard to believe this metamorphosis, but it is special that I can see this through Ann's children. Since naturally this is not a joy I will be seeing for myself with Mattie.

Tonight Peter and I decided to cook dinner together using a recipe from one of our cookbooks. The recipe was a different twist to an alfredo sauce. It smelled good cooking, but eating it was a different story. We had more fun laughing about the consumption of this sauce, then we did making the meal. As we head into this week, I realize I have a lot to accomplish since I am heading to California to visit my parents for two weeks on Saturday, October 9. Just setting up the blog for my two week departure will take some time this week, but it is my hope to share my adventures with you as we go to the Grand Canyon for the first week and then I head to Los Angeles during the second week.