Friday, September 24, 2010

Friday, September 24, 2010

Tonight's picture was taken in June of 2009. Mattie was in the physical therapy clinic at the Hospital working with Anna (his physical therapist). Balloons became a big part of Mattie's therapy sessions. In fact, I learned more things one could do with a balloon for therapeutic purposes than I thought possible. As you can see here, Anna was trying to get Mattie to use his arms by extending them to catch and throw. What you may not recall with Mattie however, was two things. One, there were times Mattie was simply afraid to do the activity Anna presented to him. However, Anna was very good at altering the activity to fit Mattie's needs. Which was appreciated, because we both understood that if Mattie turned off to therapy, that wouldn't be good for his recovery in the long term. Mattie complied with Anna, because she gained his respect. I can assure you Mattie did not work as well with other physical therapists. Anna understood the importance of rapport and trust with her patients, and I believe in the end, that is what helped to solidify their relationship. The second thing about Mattie was he would get bored with a repeated activity easily. So this always kept Anna on her toes. He forced her to be creative, to think outside the box, and to have fun while working hard. I would say she and Mattie were successful together and if the cancer hadn't come back so soon, I do believe Anna would have made progress with getting Mattie to walk again.

Quote of the day: In the beginning, there is a whole year of those terrible "firsts" - his birthday, your birthday, your anniversary, all the holidays. Each time one came and went, however, it was a small victory, achieved with the help of those around me. My mother and my dogs formed the inner circle. Then there were the friends who set about putting pieces back together, each in his or her own way. They know who they are and I'm deeply grateful. ~ Betty White


I agree with tonight's quote, for those of you who remain committed to us, our story, and have not grown tired of hearing about our feelings and fears, we THANK YOU! As Betty White says...... you know who you are, and we are deeply grateful!

Peter and I have a Mattie Miracle Cancer Foundation board meeting coming up in the beginning of October. One of the things I worked on today was compiling a listing of all the events we sponsored and participated in over the last year. In addition, I have been able to photo document each of these events, which is important to me. Somehow seeing what we have accomplished on paper makes me understand that despite a very wicked year without Mattie, the Foundation was active, and made some important connections and contributions. I will share this listing with you shortly. I think it is one thing to talk about the activities, but to actually see them listed speaks volumes. Starting up a Foundation is challenging in and of itself, but starting up a Foundation right after your son dies magnifies the complexity in immeasurable ways. Nonetheless, despite the tumultuous year we had emotionally, Mattie's memory continues to live strong in our activities and in our hearts and minds.

As I left our home today, I noticed Mattie's sandbox had been opened and the sand was in every which direction. Some how that startled me, so when I was walking out of our deck to see this sight, I literally walked right into a door, and hurt my arm in the process. There are children in our complex that like Mattie's sandbox, and because there is no longer any room on our deck (because Speedy Red is parked there!), the sandbox is out in the common area. I have gotten used to the fact that others want to play in the box now, but there are times it still catches me off guard. Mainly I think it catches me by surprise because when I see the sand tossed everywhere, it reminds me of how the ground used to look after Mattie finished playing in the box.

This afternoon, I met up with Ann and we had lunch together and then went shoe shopping. Some women like clothes, handbags, or other fashion accessories, I happen to LOVE shoes. The irony about my foot is it changed after I had Mattie. I am not sure how that exactly happened, but I went from having a narrow foot  to now having an average width. In many ways, this enables me to find shoes that easily fit my foot. I consider that a gift from Mattie! Needless to say, I had a good time trying on shoes, but really have to wonder about some of the shoe designs these days.

Peter got home earlier than usual because he now has a headache. A very unusual occurrence for him. We are exact opposites. I have a headache everyday, and he never gets one. We went out to dinner tonight, and chatted about many things. Tomorrow Peter is headed to New York with Ann and her son, Michael. They are going to see a Yankees/Red Sox game. They asked if I wanted to go, but taking me to a baseball game is typically not a fun experience for those who really want to watch the game. Also the idea of being in a car most of the day really isn't appealing either. While Peter will be in New York, I will be attending my friend's, Mary Ann, mom's memorial service. Mary Ann's mom died from a battle with cancer. A battle I understand well. In the evening, I was invited by Tanja to her Pampered Chef party. Around 20% of the proceeds from these kitchen gadgets will go to the Mattie Miracle Cancer Foundation. I am simply touched that Tanja is hosting such a gathering. So in essence Peter and I both have a busy Saturday ahead of us.
 
I wanted to end tonight's posting with a message from a young lady I only met once. Carly was a student physical therapy intern, training with Anna. Despite only meeting us once, Mattie captured her heart on that day. I wasn't aware of this, nor did I know Carly was a blog reader, until I received this beautiful e-mail last night. For those of you who have the courage to write to me, I THANK YOU! Carly wrote, "I have been wanting to write to you for a very long time to say thank you. I crossed paths with you and Mattie last summer during one of your clinic visits I was shadowing Anna as a physical therapy student. I had a chance to talk with Mattie and he told me that he had a website and I have been reading daily ever since. Even though he was not up to PT that day he still took time to talk with me and I could see that he was making greater impacts on the people he met than the people that tried to impact his life. Since then I must say even though it was a short meeting I feel as though Mattie helped to guide my career. I took a rotation this past summer at a childrens hospital in Rhode Island and could not help but to think of you and Mattie almost every day. As I look to start my career as a physical therapist in January at University of MD Med Center I knew I wouldn't be where I am today without influential patients and families like you. So all I really can say is thank you for sharing Mattie and your heart with all of us who read the blog each day it is just inspiring and heartwarming to see the strength that you and Peter carry with you in keeping the spirit of Mattie alive.  Ps. I can not look at butterflies without thinking of Mattie and I was wondering if you have ever heard of a butterfly bush? It is a flowering bush that attracts butterflies, we have one at my house and even my dad noticed this summer the butterflies have been so plentiful and I just think to myself, thank you Mattie."

Thursday, September 23, 2010

Thursday, September 23, 2010

Tonight's picture was taken in June of 2009. Mattie was working with Anna, his physical therapist, in the PT clinic. As you can see, Mattie was sitting on a platform swing, and Anna was trying to have Mattie stretch Steve (the name of Mattie's right leg!) and straighten out his knee as he was swinging. The irony about this picture is when Mattie was first introduced to a platform swing at his occupational therapist's office (at around age 2), Mattie was scared out of his mind. In fact, Mattie despised ALL swings and motion when he was a toddler. Kathie (Mattie's occupational therapist) worked with Mattie and I for two and a half years. I literally participated in all therapy appointments because I wanted to learn whatever techniques Kathie was doing so I could integrate them into Mattie's everyday life. Needless to say,  occupational therapy with Kathie was a beautiful thing for Mattie. He slowly developed into his own person who wasn't afraid of swings, motion, textures of things, the feelings of certain foods, and a host of other sensory things. In fact, from an early point in Mattie's life, therapy was simply a part of our world. I learned a great deal about physical and occupational therapies through Mattie, and though Mattie was the identified patient, I was gaining skills and support from these vital ladies in our lives. To Anna and Kathie, I will always be grateful.

Quote of the day: I don't know why God makes people and then takes them back while they're still having fun with the life He gave them in the first place. Just like I don't know if I'm supposed to celebrate the fact that Gilda (Radner) was in my life, or feel cheated that she's not here anymore. But even though her body grew to betray her, spirits just don't die. And that's what Gilda was. ~ Alan Zweibel

This is a powerful quote to me, because it is stating many of the same questions and feelings I have on a daily basis. Why did God take Mattie back, when he was having fun and still living? How am I to deal with this loss, am I to "celebrate" that Mattie was in my life or feel "cheated" because he is no longer here? I honestly do not have answers to either question, but I see others share this same quandary and disbelief as they try to understand and navigate their losses. Not that I take comfort in this notion, but knowing that others have these same fears, thoughts, and feelings does help me feel less isolated. As I look at photos around our home this week, and I stare into Mattie's eyes, through these two-dimensional illustrations, what jumps out at me is Mattie's spirit in all dimensions. Mattie was filled with an infectious energy and personality, and you can almost sense these aspects of him by staring into his eyes or gazing at his beautiful smile.

This afternoon, I met Ann at a local shopping mall. She needed to purchase something at the Apple store. I must admit I have NEVER ventured into an Apple store before. But I must say it was a total experience. On a Thursday, at 1pm, I was stunned to see this store packed with people. People of all ages. Ann and I wanted to know why the children we saw weren't in school, and why were all these adults shopping?! The way things work at the Apple store is there is no checkout lines, no cash registers, and really no centralized location in the store to get help. The store assistants are simply dispersed around the store and literally buzzing around helping people. In fact, Ann went through three people, until we found one person who would stand still long enough to answer her questions. Three is a charm, and this third guy was something out of a sitcom. Honestly I should have taken out my camera, but I knew that would have been over the top awkward. This person, like all the other assistants was wearing a blue t-shirt, and was holding what looked like an iphone in his hand. However, this was no ordinary gadget. It was like a remote cash register, but it was no bigger than the size of a pocket calculator. Needless to say he was able to swipe Ann's credit card and do just about everything with this tiny hand held device. I was simply perplexed by this whole operation and I started asking him what does he do if a customer hands him cash or wants a paper receipt. He had logical answers to both questions. By the time I finished with him, I am not sure who found who more entertaining. Ann was mediating this dialogue, and once her transaction was complete, I found that in five minutes I had laughed more than during the entire week. I literally had tears in my eyes. My hunch is, we may have been his guy's funniest customers for the day!

Ann and I had lunch together and we chatted about a host of different things. Time went quickly and I literally put my issues aside for a period of time, which made me feel lighter. When I got home, I spent time in our garden, Patches (our cat) joined me outside, and I caught up on other chores. However, I received an email from my colleague and friend, Nancy today. In our email dialogue we talked about a word I don't always use, but it is definitely a vital word when coping with traumatic grief, and that is SAFETY. When your world falls apart around you, and you see your child suffer and then die in a horrific way, this shatters normalcy and it also eats away at any thoughts of safety. It is hard not to be deeply affected by Mattie's loss and to not live in fear. Fear that everything you thought you understood about the world NO longer makes sense. So the question is how to go about feeling safe again? Again, I have no answers to this question, other than I know I need certain people and activities in my life to make me feel safe and to make me feel secure. In time perhaps this will change, but for now, I take comfort in knowing that I at least have some protective factors in my life.

I began tonight's posting with a quote about Gilda Radner, and now I would like to end tonight's posting with a quote from her.  "It's such an act of optimism to get through a day and enjoy it and laugh and do all that without thinking about dying. What spirit human beings have!" ~ Gilda Radner

Wednesday, September 22, 2010

Wednesday, September 22, 2010

Tonight's picture was taken in June of 2009. Mattie was in a physical therapy session with Anna. Anna understood that therapy for Mattie had to be creative, fun, and stimulating. She did not disappoint. In fact, I would imagine that Mattie pushed Anna in many ways as a professional, and unlike others, Anna not only could handle the challenge but managed many difficult occasions with us beautifully. In this picture, Mattie was racing "Steve," the name that Dr. Bob gave to Mattie's right leg, on a mirror with paint. We timed his right leg versus his left leg. Mattie's left leg, "George," was quite a leg. This was the only extremity that Mattie did not have an operation on, and George could do just about anything an arm and hand could do! Mattie's nurses knew this first hand. George was skilled at pulling belts off of sweaters and rumaging through nurses pockets and pulling out all sorts of things.

Quote of the day: I remember the first minute that Carl (Sagan) and I fell in love. The gates of the world opened up, but at the same moment I had a sense of awesome liabilities. When you love someone that much and you are that happy, you know that if something happens to the other person you will be smashed. Still, I have learned in the last six months that when you love someone with your heart and soul, you are left with something that is enough to sustain you. Loving on what is essentially a tiny pale blue dot, as Carl called the Earth, and having that soaring experience is what makes the vastness bearable. ~ Annie Druyan (remembering her husband)


I had a slow start to the day, but I finally pulled myself away from the computer and got it together and went out this afternoon. The weather was simply glorious, in the 80s and humid. It could stay this way year round, and I would be absolutely happy. Sometimes when I feel as down as I do, it is hard to want to leave our home. But I decided to go for a pedicure, which forced me out into the world. However, this week where ever I go, I have my stack of research papers in tow with me. The papers are all addressing the psychosocial risks of a pediatric cancer diagnosis. It reminds me of my days in graduate school when I was trying to write my dissertation.

Later in the afternoon, I stopped by Ann's house, and we had lunch together, and I spent time in her gardens. Her praying mantis was in his usual spot today and unfortunately was successful at capturing a butterfly and was eating half of it while I was watering the plants.

This evening, Peter raced home so that we could head to a play called, The Talented Mr. Ripley. Some of you may be familiar with Patricia Highsmith's novel, or perhaps have seen the movie with Matt Damon. I was familiar with neither, but when I read that the play was a psychological thriller, it caught my attention and I bought tickets. The irony is I never knew about this playhouse in Maryland until I recently won tickets to this theatre from Mattie's  preschool 2010 auction. The Roundhouse Theatre in Bethesda, MD is a charming theatre and the quality of their performances are solid and creatively done!

The synoposis the theatre provided about the play was: Enigmatic conman Tom Ripley is determined to gain wealth and social status by any means possible. The perfect opportunity arises when American financier Herbert Greenleaf sends him to Italy to track down his son, who has been living the high life there with his beautiful girlfriend. His mission takes on a sinister twist as the lives of Ripley and young Richard Greenleaf become inextricably entwined – with murder the only way out.

The character of Mr. Ripley was truly disturbing. He literally lives in his own world, where abusing people, killing people, and having no remorse for any of his actions are all acceptable. He occasionally has private moments where you can see he is tortured by his actions, but he quickly finds a way to talk himself through those thoughts and these talks only seem to strengthen his psychopathic personality. During the intermission, Peter and I walked out into the hallway of the theatre. I told him to pull out his blackberry because I wanted him to read the criteria for Antisocial Personality Disorder. As Peter glanced through the criteria, he said, "absolutely, you are right."

The terminology antisocial is quite misused in our society. Because we assume people are being antisocial if they are being aloof, unfriendly, and standoffish. However, this is NOT what antisocial means according to the DSM-IVTR. I included (below) the criteria one needs to meet to obtain such a diagnosis if you are interested.

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Diagnostic Features:

Antisocial Personality Disorder is a condition characterized by persistent disregard for, and violation of, the rights of others that begins in childhood or early adolescence and continues into adulthood. Deceit and manipulation are central features of this disorder. For this diagnosis to be given, the individual must be at least 18, and must have had some symptoms of Conduct Disorder (i.e., delinquency) before age 15. This disorder is only diagnosed when these behaviors become persistent and very disabling or distressing.

Diagnostic Criteria:

Three or more of the following are required:

1) Failure to conform to social norms with respect to lawful behaviors as indicated by repeatedly performing acts that are grounds for arrest

2) Deceitfulness, as indicated by repeatedly lying, use of aliases, or conning others for personal profit or pleasure

3) Impulsivity or failure to plan ahead

4) Irritability and aggressiveness, as indicated by repeated physical fights or assaults

5) Reckless disregard for safety of self or others

6) Consistent irresponsibility, as indicated by repeated failure to sustain consistent work behavior or honor financial obligations

7) Lack of remorse, as indicated by being indifferent to or rationalizing having hurt, mistreated, or stolen from another

Since these antisocial behaviors are commonly observed in children and adolescents, this disorder is only diagnosed if these antisocial behaviors persist into adulthood (i.e., if age is 18 or older). The diagnosis of Antisocial Personality requires that there was evidence of delinquency (Conduct Disorder) with onset before age 15 years. This is in contrast to the (non-DSM-IV) diagnosis of being a psychopath which does not require a prior diagnosis of Conduct Disorder. The diagnosis of Antisocial Personality Disorder is not made if the occurrence of antisocial behavior occurs exclusively during the course of Schizophrenia or a Manic Episode.
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The Talented Mr. Ripley is NOT upbeat by any stretch of the imagination. The sad part about this play is that there are individuals in our world like Mr. Ripley's character. Nonetheless, the play was stimulating, and portrayed a scary insight into the depths of this personality disorder and the effects this disorder has on others. I did not come away from this play happy, but it did take my mind off of my own issues for a while, and it gave Peter and I the opportunity to spend time together doing things we used to enjoy at one time.
 
I would like to end tonight's posting with a message from my friend and colleague, Nancy. Nancy wrote, "So often, when you write I am moved beyond words. Then there are times that I need a 'crib sheet' to catch all my key points and comment. This is one of those times. First of all, I am so proud of the way that you approach each day. Just as you spoke of partner relationships, it is true that many do not let anyone in when dealing with so intense a grief. Many times you provoke and promote others to question where they are. You inspire others to deal with their present value system and decide if there are holes. Commentators of the blog have often stated how their lives have been changed by all of your family. This is another reason to keep the blog going. It is something that you can do on the Foundation page as a shift when you want to stop this blog. My idea is: as word spreads about the foundation, families will have questions and I see a Dear Vicki column in the making. A family would have a link to ask questions and you or someone on the foundation board would be able to respond. As far as you going on this new board. All I can say is "You go, Girl!" Peter's comment shows how well he knows you and your devotion to a cause, this cause, especially. In an ironic way, having the board chair and you, as mothers who have lost their children, will bring a well needed balance. It is a spiritual message! I see you beginning the study of this community and funneling your energy into changing the current policies and procedures.This is doable unlike getting our governmental lobbyists to see the value in giving money towards research and more importantly supplemental services for families. I was reflecting on your comments regarding a marital relationship and the many couples who drift apart and may break as the result of a trauma like yours. It is more common than what Peter and you exhibit. In learning about your relationship, you were friends and co-workers before Mattie. You were individuals who learned how to balance different styles and interests and decide to make a commitment to your union. I believe Peter and you have gotten even closer with Mattie's death as now you have each other once again. Unfortunately, you didn't get to your Empty Nest in a happy way. Yet, so many couples go through this same issue when they haven't established who they are outside of being parents and later divorces, affairs result. There is more to explore here too. My final comments are about the 'Mattie" messages. Mattie and Charlotte - a love story. Your Mattie was an old soul in a young body. Each of these images and/or pictures that show Mattie going through a life's passage before its natural time expresses an unexplained sense of closure on his part before anyone else knew it. There is a sweetness about little ones focusing on their later life. For Mattie, it was his trying new things or thinking outside the box that is amazing. It is cause for a smile. You've said earlier how the children keep reminding you that they are so connected with Mattie's soul too. Katharina's wanting to send a picture of the caterpillar to you and her calling out "Oh, Mattie." took my breath away. And Kristen, staying connected after this amount of time is another example of the unique care that Mattie, Peter, and you received. This may be unorthodox because doctors are to move on, yet, during a family's need to be heard is immeasurable. I imagine that Kristen's connection is made stronger, too, because now she is a parent and her understanding of the fragility of this relationship is heightened by her care and personal loss of Mattie. Thanks for allowing me to share my thoughts and stimulate my heart in such a meaningful way. I embrace my family with a renewed sense of love and understanding. I wish you an easier day today, a day where you can take a breath and realize that all you do is exhausting. With love always and in all ways."

Tuesday, September 21, 2010

Tuesday, September 21, 2010 -- Mattie died 54 weeks ago today.

Tonight's picture was taken in June of 2009. Mattie was visiting his "girlfriend," Charlotte. Charlotte's mom, Ellen, invited all three of us to her house for dinner. That particular night Mattie actually ate, which was a rarity! We were sitting outside, and the kids were having a good time playing and eating together. It was a very memorable evening. As it became time to leave Charlotte's house that evening, Mattie and Charlotte started to chase each other around the first floor. Now mind you Mattie did not walk at all, but somehow he found a way to hobble around and be playful. It was that night, I saw my seven year old be transformed into "the kissing bandit." Literally he and Charlotte joked about kissing each other, and finally they stopped the chasing game and actually kissed each other. I was in total shock, and naturally the more shocked I was the more they wanted to repeat the action. As I look back at that night, I of course smile because of the happiness Mattie felt, and I also realize that to some extent Mattie died knowing what it felt like to be loved by a girl (other than myself of course!). When Mattie was healthy he talked about marrying Charlotte all the time. He even gave her an engagement ring which he won at his dentist check up, and I assure you watching Mattie give the ring to Charlotte was a SIGHT! When you look at this picture though, to me Mattie looks healthy. He looks happy and he looks like he was given another chance at life. As I have learned though, pictures can be deceiving!


Quote of the day: Only the person who is incapable of love is entirely free of the possibility of grief. In the words of a dying man: "The agony is great and yet I will stand it. Had I not loved so very much, but goodness knows I would not want to diminish that precious love by one fraction. I will hurt and I will be grateful for it. For it bears witness to the depth of our meanings and for that I will be eternally grateful." ~ Scotty, a hospice chaplain


Today was another challenging day. I spent the entire day at home. I felt very tired, run down, and really unable to muster the energy to do much. I did try to spend the morning doing literature searches for our Foundation work. I want to learn as much as I can about the psychosocial risks present in families whose child has been diagnosed with cancer. I also want to know what interventions are provided in a hospital setting to address these risks, and how the effectiveness of these services offered have been measured. As is NO surprise to me, there isn't much research in this entire area! So I spent a good part of the day by the computer, researching and reading. As the day wore on, so did I, and at some point, I had to put my head down and rest.

This evening I attended my first Georgetown University Hospital pediatric parent advisory board meeting. I applied for a seat to sit on the board, and was accepted. I had the opportunity to meet the parent chair of the board a few months ago. She is a lovely individual and we share the fact that we both lost our sons at the Hospital. The other board members are comprised of Hospital staff and fellow parents. However, it is very hard for me to sometimes hear these success stories. In fact, before the meeting started the parent members were all talking about their children. Certainly a natural thing to do, but I had nothing to talk about. I could relate to what they were saying, but I couldn't participate in what they were saying because I am no longer a parent. That was a hard rude awakening. In fact, revisiting the hospital was also a rude awakening. As I was leaving the hospital, which was around 9pm, I was walking down the hallway, a hallway I walked many months with Mattie. It was an eerie feeling which left me feeling more alone, isolated, and upset.

I had the opportunity to learn about the board's mission tonight as well as brainstorm some of the activities we would like to work on to help improve the quality of lives of pediatric families at the Hospital. Keep in mind that there are three pediatric units on the fifth floor of the hospital. This was the floor where Mattie spent a good chunk of his cancer life. On that floor is the PICU unit, the HEM/ONC unit, and the transplant unit. The chair of the board was explaining to the new members that a family care survey was created by the board and is now being distributed by the PICU staff. The survey is designed to capture the feelings and insights of families regarding the level and quality of care they receive at the hospital. However, what caught my attention is the fact that the only families allowed to participate in this survey right now are PICU families. The other two units on the fifth floor do not have access to this survey. I am not sure what message that sends out!!! Maybe HEM/ONC and transplant families are not as important?! As a parent who spent an enormous amount of time on the fifth floor, I feel like I can safely say that I have a solid understanding for the dynamics, responsibilities, and culture of the fifth floor. Each of the three units has its own dynamic, and what other board members may not realize is that living in this community for over a year, makes me privy to insights that an outsider may not know about. Insights as it relates to how units get along with each other, and the overall climate of the units and the floor. You may ask how do I know this? Well all I can say is when you spend an inordinate amount of time in one place, you make observations, you get to understand the cast of characters, and the problems in your community. It is equivalent to getting to know your neighbors.

So when I heard that only one unit was asked for family feedback, I took great issue with this. Mainly because the parents in the HEM/ONC and transplant units spend a large amount of time hospitalized. If you want accurate feedback, asking these folks in my opinion would be your best bet. Many of the patients in the PICU are short term stays and a good deal of patients are intubated and can not participate in many of the services even offered to the children. So seeking feedback from short term stays doesn't seem to compute in my mind. In addition, I wanted to know why these other two units were not represented by hospital staff in these board meetings. When I came home and told Peter what I was saying, he simply made me laugh. He said the PICU staff is most likely saying, "oh SH** she is back again!" Needless to say, I needed that funny line after how I was feeling all day today. When I joined this board, my goal was to help all of pediatrics, not just the PICU, and after our 15 month battle dealing with cancer, I feel it is important that these families are adequately represented.

After the meeting was over, I had the opportunity to chat with the chair. She too is experiencing an anniversary of her son's death, and through our conversation we both landed up in tears. She was saying many of things I felt. That time doesn't help. Even after four years, the loss of her son is very real, and at the same time, we both struggle to remember the happy details. The gruesome ones are on the forefront of our minds. We also talked about the impact of such a death on a married couple. For those of you reading this blog, who are married and have children, I ask you to reflect on what you and your spouse talk about!? The most likely response would be you talk about your children. Their days, their goals, issues, problems, and their successes. Okay, now picture that you wake up tomorrow and you have NO children. They were taken from you, and they aren't coming back ever. Now what do you and your spouse talk about? You have been programmed for years to talk about your children, but now what? What unites you? What keeps you moving on toward a future? The answers aren't so clear, and it takes a great deal of healing to find a way back to finding one's self, much less finding and repairing a relationship.

Peter updated the Foundation website today and gave a beautiful detailed overview of the September 16th pediatric cancer caucus we attended. If you want to read more, please visit: https://www.mattiemiracle.com/Pediatric_Cancer_Caucus.html

I received this wonderful picture tonight from Tanja. Check out this gigantic caterpillar resting on her parsley! Mattie would have been thrilled to receive this picture. Tanja wrote, "As I walked into our yard to get some parsley for some soup I was fixing, I was startled and got the chills when I saw so many beautiful, colorful and huge caterpillars on the parsley. I have never seen such gorgeous and big creatures before in my life. Mattie really got me!!!! I'll send some pictures, soon. I rarely get the chills about any creature but this sighting was too much. Needless to say, I got very little parsley because I could not disturb these magnificent animals. When I told Katharina about them, she said: oh Mattie!!!! You have to send the pictures to Vicki."



I would like to end tonight's posting with a message from Mattie's oncologist and our friend, Kristen. Today is Tuesday and represents the 54th week of Mattie's passing. Kristen has not forgotten. I learned pretty early on in Mattie's treatment process that Kristen is just as sentimental as I am, and it does not surprise me in the least her level of devotion to us even after Mattie's passing. What a doctor, how do we create more physicians like her?!!!!!!!!!!!! Kristen wrote, "Today is Tuesday. It is not just another Tuesday either, because I realize all of the "other Tuesdays" ended 54 weeks ago. Now, every Tuesday is a statement and a testimonial. Every Tuesday is a remembrance and a reorganization of priorities. Every Tuesday is a reminder for me to tell two of the most amazing parents in the world that I am thinking of them. Thinking of you this Tuesday and every day."

Monday, September 20, 2010

Monday, September 20, 2010

Tonight's picture was taken on June 15, 2009. The day of Mattie's sternotomy. In fact we were waiting in the pre-op area, and as you can see from Mattie's eyes, he was already being sedated. I will never forget this pre-op area. Basically it is one big holding room, partitioned with curtains. All the patients in there (the three times we were there) were all adults. Mattie was the ONLY child. The space was chaotic, doctors and nurses were running around and firing questions at you. In fact, we met Mattie's anesthesiologist for the first time in such an environment. During the first major limb salvaging surgery, the anesthesiologist and I were at odds with each other. She made me tense, she did not want to hear from Peter or myself, and even worse, she seemed to have contrary opinions about pain management from Mattie's surgeon, Dr. Bob. During Mattie sternotomy however, we had a wonderful anesthesiologist who was trained in Rome. He had a very warm and competent personality, and I think he really related to the nightmare we were living. In any case, in tonight's picture, you can see that Linda (Mattie's childlife specialist) attached a note to Mattie's gown. The note said: "Dr. Chahine, give us a Mattie Miracle." Mattie, Peter, and I were talking about a Mattie Miracle before the surgery (in that once all the lung tumors were removed, he would be cancer free), and we told Mattie the story of how my dad wrote a note to his surgeon and taped it to his leg before he was carted off to the operating room. Mattie thought that was a clever idea, so Linda put our thoughts down in writing, and taped it to Mattie! I hear Dr. Chahine got a chuckle out of this note! Dr. Chahine is a wonderful surgeon, and a very devoted doctor. He and I connected immediately, and he visited Mattie once or twice a day, post surgery. One day, he even came in and brought Mattie a toy. Dr. Chahine was just as mortified as we were when he learned that Mattie's cancer spread only six weeks post-chemo.


Quote of the day: I don't care what they say with their mouths--- everybody knows that something is eternal. And it ain't houses, and it ain't names, and it ain't earth, and it ain't even stars--- everybody knows in their bones that something is eternal, and that something has to do with human beings. All the greatest people ever lived have been telling us that for five thousand years and yet you'd be surprised how people are always losing hold of it. There's something way down deep that's eternal about every human being. ~ Thornton Wilder

This morning I went to go pick up Patches at the vet. We boarded her over the weekend because she is a sickly cat who needs to be monitored. Taking her to other people's homes is now out of the question. Patches' vet is in the heart of Dupont Circle, in Washington, DC. So literally it is hard to park a car there midday. So I parked many blocks away and had to walk to get Patches. On my walk, I was captured by this colorful garden outside a brownstone building. I noticed this garden on Friday too, but today, I figured since I was passing it again, I should stop and take a picture of it. The combination of colors is breathtaking, and there are herbs growing in this garden too such as rosemary and basil. In essence this garden was an unexpected surprise for me, and in addition to this, the weather was glorious today, so I wanted to somehow capture this moment in time.

I met up with Ann for lunch. Before she arrived, I sat at a table, and read a book. The book is not sad at all, but while reading I became teary many times. Why? Well it is hard to explain, most likely a host of reasons. The main one of course being Mattie's absence, but the others revolve around feeling tired, dealing with non-stop headaches, and an overall feeling of being unable to focus on anything. I have had these moments before in the grief process, and at the present time am going through another low. Certainly while I am in this mood being able to concentrate on next steps forward for the Foundation are hard for me. However, while sitting with Ann, I was able to verbalize two things. The first thing is each Foundation decision and activity deeply reflects on Mattie and our love for him. Therefore, I do not want things to fail or not do justice to his memory. That sounds simple enough, but in all reality that puts an extraordinary amount of pressure on me, and with my current state, such pressure lands up paralyzing me.

The other thing I discussed at lunch is my disillusionment with pediatric cancer research. Every pediatric cancer organization is out there beating the pavements saying it is vital to raise money for more effective and innovative pediatric cancer treatments. I certainly agree with this wholeheartedly, or at least in theory. This week, I feel more cynical. In all reality we could throw millions of dollars more at the problem, but will this really help? After all, there isn't ONE type of pediatric cancer, there are over 12 major categories of pediatric cancers, and pediatric cancers behave much differently from adult cancers. In addition, in comparison to adult cancers, the numbers of children available to study with each form of cancer are SMALL. With Mattie's type of osteosarcoma, Multifocal Osteosarcoma, we were told that perhaps one child a year in the entire world develops this disease. If that! So I guess today I felt a feeling of hopelessness fall upon me, and I am not sure if I am angry at a scientific community that failed my son, or whether I am just simply mad that cancer exists. Either case, the more I think about the complexity of the problem the more I realize that throwing money at a major problem is not going to solve it. The problem is bigger than money, it is bigger than science, and while we wait for money to be generated and science to make strides (strides which haven't been really made in DECADES), children and families sit and wait, and also suffer.

Today's lunch conversation carried over into my dinner conversation with Peter. He saw my point, and we then started to discuss actual ways the Foundation can help families psychosocially. So I started doing some literature searches this evening because I wanted to know what others are doing in this area, and how we can either bring this to Georgetown or expand upon it. After dinner, while writing the blog, I noticed I received a text message. When I opened it, it was from my 10 year old buddy, Katharina. We had fun chatting back and forth this evening about a whole host of things, and it leaves me in awe of the beauty of technology.

I received this lovely poem from my friend and colleague, Nancy. She wrote it in honor of Mattie's first anniversary and the struggles and feelings we continue to experience.

OUR LIFE, NOW............ or WHAT IS THE POINT? by Nancy Heller Moskowitz


Each day brings a challenge, a crossroads in my journey.
Do I reach out or stand alone?
Deciding takes longer than I like,
And, at times, decisions change like the wind.
I used to know my plan.
I used to be confident that all would work,
Until,
The day you were taken from us.
So now, I question if others will continue to care.
As your first anniversary has come and gone,
Allies, once present, decided I should move on.
Their silence is something I don't comprehend.
I could count on you, to need me, to want me.
Now I turn to find you not there.
And, I sob; "It isn't fair."
I welcome a signal, however small,
And cherish them whenever they fall,
From the sky, like a butterfly flapping its wings
Or the rustling of the wind through a chime
To a bird eating, at the feeder, on "Your" tree.
Whenever, wherever, I know I will make the time.
So this is the point of a life worth living,
To live and love and cherish each moment,
That heaven allows.

Sunday, September 19, 2010

Sunday, September 19, 2010

Tonight's picture was taken in June of 2009. At that point Mattie had completed his chemotherapy treatments and had all three surgeries behind him. It was our thinking that Mattie was on the road to recovery and rehabilitation. In June of 2009, Mattie was still coming to clinic weekly for his MTP-PE infusions (an experimental immunotherapy). That particular clinic visit, we decided to take the elevators upstairs and visit our HEM/ONC nurses on the fifth floor. They were excited to see us, and I naturally pulled out my trusty camera to document the moment. Pictured next to Mattie is Tricia on the left, and Kathleen on the right. These two nurses became very close to Mattie, they understood and respected him, and he told each of these nurses that he loved them during the course of his treatment (a word he did not use freely!). Standing next to me is Bernadette. Bernadette is a nurse tech and was one of my favorite people on the floor. She always greeted me with a smile and was always there to help with just about anything. Needless to say, these three women will never be forgotten.

Quote of the day: Human beings do not live forever. We live less than the time it takes to blink an eye, if we measure our lives against eternity. So it may be asked what value is there to a human life. There is so much pain in the world. What does it mean to have to suffer so much if our lives are nothing more than the blink of an eye? He paused again, his eyes misty now, then went on. I learned a long time ago, that a blink of an eye in itself is nothing. But the eye that blinks, that is something. A span of life is nothing. But the man who lives that span, he is something. He can fill that tiny span with meaning, so its quality is immeasurable though its quantity may be insignificant. ~ Chaim Potok


As many of my readers know, my friend Denise sent me this very touching book of quotations recently. I plan on pulling a quote from this book each night, until I have shared every quote with you. Tonight's quote spoke to me as I read it. For centuries human beings have questioned the meaning and purpose of our existence. Especially when you consider the fact that we are only present in this world for an insignificant amount of time, or a "blink of an eye." What captured my attention in this quote was the response to this existential question. It is not the amount of time we are here, nor is the number of blinks or tasks we complete. Instead it is the quality we put into our lives..... meaning how we wish to invest in friendships, in our jobs, and in our society as a whole. Doing activities and living life with meaning and purpose make our lives immeasurable. So for all intensive purposes, the quantity of Mattie's life was beyond ridiculously small and insignificant. Yet, the way he lived his life, and the way he forced those around him to live our lives, is SOMETHING of quality. Something significant.

Yesterday, while outside in Ann's garden, I had Peter come outside with me, because I had a green friend I wanted to show him. For the past two weeks, I have noticed that there is a praying mantis that lives in the African Daisy I planted in Ann's front yard. This bug comes out during the daylight hours, especially when it is sunny, to capture his prey (bees, flies, butterflies, moths, etc....). Peter was just as fascinated by this creature as I am, so I handed him my camera and he captured some wonderful pictures. Mattie would have been beside himself with this sighting. In the picture below, Peter was able to capture nature in motion. If you look closely you will see the praying mantis (green and to the left of the yellow flower) stalking a moth. It was simply fascinating to watch the antennae on its head as well as the spikes on his legs that look like claws. Our presence did alter the likely outcome, and the moth did fly away to safety. However, I am not sure I have ever been this close to a praying mantis before, and I am simply intrigued how he has made a home in this daisy!

Peter and I spent part of the day with Ann's children. Ann and Bob got back this afternoon, and once they were settled in, Peter and I headed out to lunch. At lunch, I reflected with Peter what my reunions with Mattie were like when I returned home from a trip. First of all, I rarely left Mattie, even when he was healthy. I am not sure why, but I did not. I recall my friend Alison and I discussing this once and she said perhaps I spent those intense hours and days with Mattie throughout his life because a force greater than myself knew this was necessary. Necessary because our time together was going to be cut short. That comment has stayed with me, because there maybe truth to this. On the occasions I did leave Mattie, our reunions were always very memorable. Memorable because Mattie made me feel very special upon my return. He actually would almost leap right into my arms, and cover me with kisses, and practically squeeze me to death. As I was recalling this with Peter today, I could almost feel that actual reunion feeling. As if it were happening to me at the restaurant. However, I naturally felt at the same time extremely sad because this amazing little person who was full of love is no longer in my life. 

Peter and I are now home, and of course are getting acclimated to our quiet existence. Being around children does liven one's world, and at times, like today, it is challenging to accept our reality.