Friday, March 2, 2012

Friday, March 2, 2012

Tonight's picture was taken in August of 2002. Mattie was four months old and truly loved rice cereal. In fact he loved the notion of eating and like all babies had his favorite tastes. The things he did not care for (anything with apples in it!!) came right out of his mouth and then he would make an hysterical facial expression. Almost like he was sucking on a lemon. Peter and I would crack up from laughter seeing that lemony face. What I want you to notice was Mattie was eating in Peter's lap. Mattie wasn't wild about his high chair, and particularly disliked being confined and strapped down into it. I would say that Mattie taught us one thing as parents.... the importance of creativity and that there are always multiple solutions to a problem.

Quote of the day: I would rather make mistakes in kindness and compassion than work miracles in unkindness and hardness. ~ Mother Teresa

Over the course of Mattie's battle with Osteosarcoma, my faithful readers know that Peter and I switched oncologists. I am not sure my readers know the full extent of why I switched, but one day, when I write my book, you will learn in detail about this decision. However, the doctor we switched to managing Mattie's case was Kristen. When Kristen took over Mattie's case, she already knew Peter and I by reputation and had several interactions with us in clinic. One may say that you pick a doctor because he/she is competent and is highly skilled. Yes I agree with that, but especially in oncology, you need skill, but you also need to find the right personality match to work with that respects your whole family system. Kristen was that match for us. What Kristen was able to achieve, was our TRUST! Kristen was always honest with us, yet hopeful, but also included us on decision making and treatment plans.

I overnighted my scans to Kristen at Vanderbilt University. She met with the head of the oncology department today to review my scans and discuss next steps. Kristen called me today and we spoke for about 40 minutes about the consultation and she referred me to my next doctor visit in Bethesda. To a person who has skills with a flexible scope, who may potentially be able to get a deep tissue scraping near my mass. The ironic part is Kristen said after seeing my scans, she can see why I have bladder issues. I stopped her and asked her why. Because you have to understand that the last four people I consulted with said there is no connection between this mass and my bladder issues. Kristen let me know that the scans indicate that my bladder is being pressed on by this mass, which explains why I am running to the bathroom and feel pressure all the time. Finally SOMEONE who is making sense to me!

So next week, I will be adding the sixth person into my treatment plan, with hopes that he can actually shed some light on being able to get a tissue sample. At first Kristen thought the doctor in Bethesda who I am being referred to may be retired, but then she said if anyone can convince someone to reverse his retirement decision and come back to work, it would be me. Fortunately that won't be necessary since he does have a private practice in Bethesda and is associated with Georgetown Hospital. 

As Kristen knows, dealing with me medically, when there is a serious issue, is challenging. I am a force to be reckoned with, and not every doctor can handle me. Not because I am emotional, which I can be, but because I ask a lot of questions, and I remember everything you say to me. If I find you tell me one thing about my condition, and then later sing a different tune, I am going to call you out on it. I don't accept what a medical doctor tells me outright (assuming we are talking about a serious medical issue), and frankly no one should. What I do know is that a good doctor can handle the criticism and is open to exploring options and questions with you. As my doctor friend, Dave, in Washington State said to me.... "Vicki you have every right to ask as many questions as you want and to seek as many opinions that make you comfortable." Yes Dave is my friend, but in essence to me that is the response of a competent and effective doctor. As I told Kristen, she had no idea that signing up to care for Mattie was really a package deal, and now she is dealing with me. However, her response was that there is nothing she wouldn't do for me. See why I love her? Competent, capable, and compassionate!

Thursday, March 1, 2012

Thursday, March 1, 2012

Tonight's picture was taken in August of 2002. Mattie was four months old. What I love about this picture is two things. First, Peter snapped this picture while I was playing with Mattie on the couch and what I can clearly see was Mattie staring directly at me. Not the camera and not at his toys. Second, from my perspective, Mattie looks just like a doll sitting in and amongst the toys. He had a precious face and cheeks as soft as a rose petal.


Quote of the day: For beautiful eyes, look for the good in others; for beautiful lips, speak only words of kindness; and for poise, walk with the knowledge that you are never alone. ~ Audrey Hepburn

I began my day with a conference call with the five psycho-oncologists who will be presenting at the Foundation's Symposium. I appreciate the opportunity to get to know these professionals and to hear about their research and their clinical experiences. Experiences which I can relate to after surviving Mattie's cancer battle. In a way, it is a very exciting time for the Foundation because in our own way we are doing something very novel and are charting new territory on Capitol Hill. The Hill is very used to hearing people beating the pavement about the need for funding medical research, but they are not used to professionals and parents coming before them to talk about the psychological and emotional experiences of cancer, its treatment, and its lasting side effects. This is where the Foundation's Symposium comes in and sheds a broader light on the day to day struggles and challenges of living with childhood cancer. The chemotherapy, radiation, and surgeries are really a small component of the treatment process. However, it is the impact of these treatments that have very tangible and day to day consequences on patients and their families. If you doubt this, just ask anyone who has experienced chemotherapy administered through a port or broviac. The infusion can take minutes to several hours, but the resultant ill feelings and lethargy can last for days! Such physical feelings can in turn produce very real psychological effects such as anger, sadness, fear, and shutting out the one's you love. In so many ways it is surviving the day to day battle that makes cancer so overwhelming and at times hopeless. Therefore, I am working hard on creating the best event possible and I am pleased with our registration numbers so far.

Our Symposium Scientific Chair, Dr. Anne Kazak, developed an online resource called the Health Care Toolbox, which guides children and families as they cope with illness and injuries. On the website today, Anne posted the following link, which I invite you to check out. The link discusses the Foundation's legislation and upcoming Symposium...........................

http://www.healthcaretoolbox.org/wordpress/?p=343

This afternoon, I was treated to a delightful lunch at the Ritz Carlton in Georgetown. The lunch was coordinated by Ellen, one of the Girl Scout troop leaders I have gotten to know. Ellen wanted to introduce me to two talented, energetic, and knowledgeable fundraisers and event coordinators at Georgetown University. It was a very fruitful conversation, which also gave me the opportunity to tell them about Mattie Miracle. The conclusion I have come to about running a non-profit is its success has a lot to do with having the right connections within the community and building a solid network of supporters who share our vision and passion for childhood cancer.   

Wednesday, February 29, 2012

Wednesday, February 29, 2012


Tonight's picture was taken in July of 2002. Mattie was three months old and getting baptized. Father Jim Greenfield baptized Mattie and he also presided over Mattie's funeral. I met Jim at the George Washington University. Jim was the head of the Newman Center at the time and I paid him a visit one day when I was looking for my very first client to counsel for a course assignment. Jim is not only a gifted priest but a wonderful counseling professional. Jim was an outstanding supervisor to me and even after I finished counseling his parishioner, we stayed connected. Jim gave Peter and I precana, which is a process couples must complete in order to get married in the Catholic church. So after I gave birth to Mattie, Jim was the natural choice for us to turn to for spiritual guidance. Jim held a private baptism for Mattie and I love this picture that I snapped that day. What the picture illustrated was Jim telling our friends and family that Mattie was the FIRST child he ever baptized who smiled and laughed when holy water was poured on his head. You can see Jim holding up one finger to make his point. You can also see Peter, my brother-in-law, and sister-in-law in the background smiling as a result of Mattie's very cute response.


Quote of the day: We don't see things as they are, we see them as we are. ~ Anais Nin

I think there is a great deal of truth in this statement. It is impossible to interpret others and the world around us independently from our own lens. Into each interaction we carry our own experiences, perspective, and at times baggage. Therefore, it is easy to read into things that may not even be there. I no longer look at the world in a naive way, instead I view life as finite, each day fleeting, and am very aware of parents suffering daily while caring for sick children or children with profound disabilities.

I want my readers to know that today is Worldwide Rare Disease Day. It is always recognized on the last day in February. In the U.S., a rare disease is one that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, as many as one in ten Americans are suffering from a rare disease. Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult.

Due to Mattie's unique form of Osteosarcoma, he was considered to have a rare disease. Though this campaign doesn't address cancer per se, it does advocate for the needs of children and their families battling life threatening conditions, something that I am very familiar with. It is quite possible that many of my readers have never heard of this rare disease movement in the US, so I attached a link below about the day and also a very short promotional video which was very profound since it uses very few words.  
http://rarediseaseday.us/

Rare Disease Day Video
http://www.rarediseaseday.org/solidarity


Despite it raining non-stop today, I got out and about. Ann and I went shopping together, which in many ways was reminiscent of our early days together after Mattie just died. Shopping seemed to be a distraction for both of us. However, this store wasn't prepared for either of us and clearly we made the store clerk jumpy. When she began to tell me that she knew how to put colors together better than I did, I had to bite my tongue, which isn't easy now since I am sleep deprived and have a short fuse.

In the afternoon, I had lunch with my friend Heidi and her daughter Isabel. Isabel's Girl Scout troop is the one working closely with Mattie Miracle this spring. Isabel developed her own craft idea for raising money at this year's Foundation Walk. I very much appreciate her initiative and commitment to our cause. I do not spend much time around 14 year old girls, but there were aspects of Isabel today that reminded me of myself at her age. My experience raising a child ends at age 7. So in a way from a parental perspective my skills are stunted, but I enjoyed hearing about Isabel's science fair (she chose a behavioral science experiment, so I could relate to this wholeheartedly) and learning about her interests. One of the conversations at lunch which I found very stimulating was our discussion on volunteerism.

When I was growing up, teens volunteered. For example, I earned several hundred hours in high school working with older adults in hospital geriatric units. I did not do this for school credit, I did not do this for a school assignment, I did not do this to get featured in an article, and I did not do it for any tangible product or outcome. I did it because in a way helping people was an expectation of me, maybe set by my family and my community. Now, how often do you see a teenager decide to volunteer to do something without having an incentive? In all fairness, a great deal of our kids today are over programmed and even if they wanted to volunteer, they neither have the time to do this or are given the opportunity to even explore what interests them enough to delve into an activity. That to me is a sad commentary. Instead, we have moved away from volunteerism and adopted the term service learning. Having worked in an university system that embraced service learning, I am very well versed in its notion. From an academic standpoint, there is no finer way to learn a skill than to be educated about a topic didactically in a classroom and then apply this knowledge within the community (in a real life setting). However, service learning has become so commonplace even in high schools, that in so many ways it has become just like another course, another hurdle to jump over, and another task to complete. A task nonetheless that comes with usually a grade (an incentive).

When did volunteering and helping others become an  educational course? It seems to me we have really lost something as a society and our educational system in a way is teaching students that there is a deep connection between helping others and getting an extrinsic reward (grades, courses, recognitions on college applications). Instead, the beauty of volunteerism is it should help develop a more rounded and grounded individual who can experience the joy of intrinsic rewards and feedback (feeling good about what one has done, connecting with another human being, helping and making even a small difference in a community or in someone else's life). Children and teens have the ability to self-regulate and can make the right choices if given the opportunity and freedom to get in touch with their interests and passions. At the end of the day, life is not about one's grades. I can assure you that getting all straight A's doesn't make you any more prepared for life's harsh realities, instead, it is the inner resources and passions one develops as a child that sets the foundation for a better and stronger tomorrow.

Tuesday, February 28, 2012

Tuesday, February 28, 2012 -- Mattie died 129 weeks ago today.

Tonight's picture was taken in July of 2002. Mattie was three months old and NOT in his most comfortable place or position. Mattie really disliked being on his back, almost as much as tummy time. In order to engage Mattie on the floor, Peter or I would get on the mat with him and try to engage and stimulate him. When I look at this photo today, I am truly not sure what Mattie was focusing his attention on, the toy bug or Peter.

 
Quote of the day: Better to do something imperfectly than to do nothing flawlessly. ~ Robert Schuller

Today seemed like a long and endless day. I began the day by calling to set up an appointment to talk by phone with the doctor scheduled to do my biopsy on Friday. As my readers know, I am very leery about this procedure, especially since I have been cautioned by other doctors not to do it. In the midst of this, I had several other dialogues today with doctors. My college friend, who was also a groomsman at our wedding, is an avid blog reader and anesthesiologist in Washington State. Dave contacted me today and offered his help. Dave has helped me many a time as it has related to sedation and anesthesiology. So I have Dave on the West coast checking in, and I had Kristen, Mattie's oncologist and our friend, who now lives in Tennessee consulting with me. Though Kristen is working full time, she took time from her schedule today to read research articles about my potential issues. As always her insights were very helpful and I work very well with a doctor like Kristen because she engages in an open dialogue, based on fact, research, and clinical judgment with her patients. Maybe it is because Kristen and I went through the worst together that she has gained my trust. But I do trust her because when she doesn't know something she admits it, but will get down to the bottom of the problem and find out the answers. So Kristen has been kind enough to have folks at her institution look at my scans as well.

This afternoon, I received a phone call from a doctor in Florida. My friend Tina connected me with this doctor. Last week I mailed my scans to this doctor and she consulted with the chief of her oncology department about my situation. She too advised me not to do the biopsy on Friday. This evening, I spoke with the doctor in Maryland who wants to do the biopsy and we decided to postpone it for now. But that option isn't off the table. I will continue with the MRI I have planned for next week. But all of this has left me tired and with my head spinning this evening.

I did go to zumba class today. I am happy I did, because it makes me feel better. I wish I could do it everyday. Then in the afternoon, I had my second acupuncture appointment. This one was a bit more painful, but I would like to do it for two months and see what changes I feel. I figure it took me a decade to build up some of these issues, therefore it will take time to heal them as well.

My excitement for the day was that I connected through email to an 80 year old woman named Dr. Jimmie Holland. Jimmie is a psychiatrist at Memorial Sloan-Kettering Cancer Center, but she is considered the mother of psycho-oncology. I introduced myself and the Foundation to Jimmie, and to my amazement Jimmie plans on coming to our Symposium and we also discussed other ways the Foundation can get involved in more professional psycho-oncology conferences. Do not be taken aback by Jimmie's age. It is only a number! People who know her say she is as sharp as a tack and has more energy than a person my age. So as tonight's quote aptly points out, it is better to try something than nothing, and today was the kind of day when my something lead to a wonderful surprise.

Monday, February 27, 2012

Monday, February 27, 2012

Tonight's picture was taken in July of 2002, when Mattie was three months old. I have been posting a series of early pictures of Mattie on the blog to illustrate his level of alertness, inquistiveness, and his fascination with the world around him. Mattie was born "ON" and wanted to be a part of the action and made sure he got attention from those around him!


Quote of the day: They say a person needs just three things to be truly happy in this world: Someone to love, something to do, and something to hope for. ~ Tom Bodett


I spent a good portion of the day today outside of our home, which was a good thing for me. I met my friend Mary for tea and we had a nice time chatting, catching up, and also talking logistics for the Foundation's symposium. Mary is a fellow preschool mom, we met each other while Mattie was in school. However, in addition to being my friend, Mary is also a professional event and conference planner. So today we sat down and discussed the Symposium, the ordering of food, the set up of the room, and other tidbits that someone in the trade would know. So it was a very productive meeting on many fronts.

After meeting Mary, I literally did not even move more than a couple of feet, because then I met up with Ann for lunch. It is very easy for me to shut others out when I am feeling scared, uncertain, and vulnerable. So in a way, being out and about made me feel a part of something.

When I got home this afternoon, I ventured out on our deck and began cleaning it up. Since we feed the birds in feeders over the winter, I have sunflower seed shells and other seed particles in every which direction on the deck. Since the weather was lovely, I spent some time outside cleaning, getting fresh air, and slowly getting ready for spring. Peter and I like spring because we spend time outside planting in our garden and somehow that is therapeutic.

However as the evening set in, I sat down with Peter to discuss the pros and cons of the biopsy I have scheduled for Friday. As a recap, I have two doctors not recommending this procedure and one who says it can be done. There are other issues associated with the procedure as well that make me uncertain about it, so I landed up typing up all the questions I have to pose to the doctor before Friday. Right now it is the not knowing what I am doing that I find particularly unsettling. 

Sunday, February 26, 2012

Sunday, February 26, 2012


Tonight's picture was taken in July of 2002. Mattie was three months old, very alert (though he was BORN alert!!), and you maybe able to see his first tooth (bottom middle) featured here. Mattie loved to sit on the couch with me and to have pillows propped up all the way around his body. Mattie was full of life and very early on I learned the hard way that he had a sense of humor. One afternoon/evening, Mattie was sitting on one of our chairs, propped up with pillows. Everything seemed fine one minute and the next he was making a funny sound. It almost sounded like he was choking or having trouble breathing. I monitored him and then called his doctor, who went through a whole list of things with me. She told me if the sound did not stop in 30 minutes to take Mattie to the emergency room. When Peter came home from work that day, I was in a panic. I had him hear the sound, but it was evident Mattie was breathing and not turning colors, and so forth. Do you want to know what that sound ultimately was?! That was Mattie's baby attempt at laughter!!! I am sure, watching me panic on the phone with the doctor was hysterical for Mattie to see, and it was by Mattie's third month of life that I learned I was dealing with a live wire.  


Quote of the day: Happiness is like a butterfly: the more you chase it, the more it will elude you, but if you turn your attention to other things, it will come and sit softly on your shoulder. ~ Henry David Thoreau

I came across this quote the other day and I immediately loved it. I think the analogy of happiness being like a butterfly is perfect. Mainly because happiness is fleeting and elusive, not unlike chasing a butterfly. I do find after Mattie's death, trying to find happiness and making myself happy, no longer works for me. But it is in doing and helping others, that occasionally unbeknownst to me a butterfly of happiness comes to sit on my shoulder however briefly.

This morning I was glued to my phone. Not that this is anything new, but my friends Ann and Tina were at a gymnastics meet with their daughters. During these meets both of my friends typically text message me. Tina and I were typing away today and I felt almost as if I were at the meet, though fortunately for me I was spared all the noise and the intensity that exists within the competition room. If you have never been to a gymnastics competition before, it is worth a visit. Mainly because you can feel the tension and stress within the room amongst the parents, as they watch their children competing. I had the best of both worlds today, I could hear how the girls were doing, stay connected with my friends, but not have to physically absorb the tension. Tension which I can't physically handle right now.

While Ann and Tina were watching their girls very successfully perform (might I add!), Peter and I were home taking on a cleaning project. Some of my faithful readers may recall that last February I began the clean out our home. Last year was beyond overwhelming trying to go through piles, boxes, and all of Mattie's things. While Mattie was battling cancer, we rarely lived at home. As such, things all around us piled up. Mattie was sent toys and gifts weekly to our home and the hospital, and frankly while helping Mattie I couldn't manage the things coming into our home. After Mattie died in September of 2009, I did not have the heart to touch ANY of his possessions. Not until February of 2011 that is! Last February the clean out process was BEYOND intense. Peter and I donated about 40 large garbage bags of items to Goodwill and the hospital. But then I gave up and never continued the process. That is until today. I did not feel like leaving our home, so instead I began cleaning out again. We went through hundreds of DVDs that Mattie used to like to watch, and that task alone was not easy. I have remained vigilant about not giving away Mattie's things, because these are all I have left of him. However, with time, I find that I am able to part with certain things, and can pin point those things that meant something to Mattie, and therefore am compelled to save them. Mattie had several favorite videos, and though they are not things I will ever watch again, I also can't part with them either.

While going through videos, something happened which I can't explain. I was cleaning and checking my blackberry for messages periodically. While text messaging my friend Tina, I saw another text message pop up at the same time, and I could see it said something like... "I am glad you found Lightning McQueen, I knew you would." I didn't continue reading it because I was still communicating with Tina. I figured it was a message from my friend Ann, and I would check it after I finished typing to Tina. However, when I went searching for this Lightning McQueen message I couldn't find it! I even asked Ann if she sent me a message and she said she hadn't. So where did the message go and who was the message from? No one knew I was cleaning things out today! So again, I add this to my list of unexplained incidents, and I have had several since Mattie died. To me these are signs in which I feel as if Mattie is communicating with me!

Seeing piles of Mattie's things all around us, brings up all sorts of feelings, and at one point today, we were both in tears. It can become very challenging to go on when we truly face our reality. Remember that within our reality is a 15 month battle with cancer, a battle that was horrific in and of itself, in which we were denied sleep and forced to see things that most people wouldn't want to see happening to their child on one day must less over a year. Then after this nightmare, we watched Mattie die in a very painful and agonizing way. These are memories that live within us and will always be a part of us. Though these are a part of us, some days and some objects transport us right back into our cancer hell.

I would like to end tonight's posting with a message I received from my mom. She reflected on the Annabel Lee poem I posted on the blog on January 28. Like me, she too was moved by this poem and Mattie's death has enabled her to truly understand the depths of this poem.

----------------------------------------------------------------------------------------------

The wind came out of the cloud by night chilling
and killing my Annabel Lee. (Poem by Edgar Allan Poe)

Commentary by Virginia R. Sardithe wind came out of the cloud chilling
And killing my Annabel Lee.

When I was young and idealistic about life, I was an optimist at heart.  In time I was introduced to the works of Edgar Allan Poe and was intrigued by his brooding melancholia. As I look back on my own life filled with moments of great happiness and those of profound sorrow, the one event that gives me the wisdom and the compassion to respect and understand the deep feelings of loneliness expressed so exquisitely in an Edgar Allan Poe verse is the death of Mattie. Edgar Allan Poe conveys so much pain in describing the loss of the love of his life by the evil forces of nature in his poetic voice saying that, “the wind came out of the cloud by night chilling and killing my Annabel Lee” separating him forever from his beloved, in a way that was both irreversible and final.  In a few simple and stark words, he has captured the emptiness inside those of us who have loved and lost who must learn to live with clouds that create perpetual shadows that dim the light of all future happiness. On further reflection, it ignites an understanding of how powerless humans are to control their own destinies and to shield their loved ones from harm. Analytically speaking, life and death from this perspective is all a matter of luck, destiny and chemistry. His words do move me to tears in a way that was not possible before.  Beware the power of nature and the force of destiny that never can be contained, he seems to say. That is why now more than ever, the focus of life should be the present for it can never be recovered, nor altered by time. Make the moments you live count and do no fritter them away.  Bringing love, comfort and help to others in need is one way to combat the evil wind coming out of the clouds that has such destructive force.  Wind and chill conspired to take Mattie away from us for he was the essence of the sun, the moon and the stars to those who knew and loved him!!  Vicki, your work with Mattie Miracle and your excellent appeal to the public in a voice of compassion and love will create roadblocks to the “wind in the clouds” and give life and disease free happiness to many children and their families. Bravo!!

Saturday, February 25, 2012

Saturday, February 25, 2012

Tonight's picture was taken in July of 2002. Mattie was three months old and featured in his favorite place (well that is when he was outside of my arms).... his car seat! To me, when Mattie was a baby he looked more like Peter, but as he developed, there was no question about who he looked like. He looked just like me and had a similar fiery temperament.


Quote of the day: Happiness comes when we test our skills towards some meaningful purpose. ~ John Stossel

Tonight's quote intrigues me because to some extent, challenges do provide opportunity for great growth, direction, and purpose in our lives. In terms of the Foundation's activities, my greatest test right now is to be able to host a congressional briefing/psychosocial research symposium on March 20. Prior to having Mattie, I had many different experiences coordinating educational trainings and conferences for my field. So thankfully I can pull from those experiences, yet despite some familiarity with professional events, the March 20th event is quite different. It is different because it involves lawmakers, members of the childhood cancer community, as well as professionals from the mental health and medical fields. When one's audience is diverse like this, it becomes a bit more challenging to meet the educational and awareness needs of everyone. Yet myself and the research team are working hard on make sure this is indeed achieved!  

Peter and I took a walk on Roosevelt Island today. Which is a typical weekend activity, because it makes us feel connected to Mattie. It was bitter and frigid out, yet we walked. These windy and grey days do get to me, especially when I am not feeling great to begin with. I continue to have intense headaches and so far have seen no difference in symptoms after the acupuncture session. However, I do go back again on Tuesday and I am hoping over time this treatment helps.

Tonight Peter and I are cooking together, which is always hysterical, since we have a way of tearing apart recipes and tweaking them to fit our own tastes. So in the midst of the cold and how I am feeling, we are trying to find moments of laughter in the day.

Friday, February 24, 2012

Friday, February 24, 2012

Tonight's picture was taken in June of 2002. Mattie was two months old and Peter, I have no doubt, snapped this picture because in our home this was a novel sight. Mattie rarely napped, but if he did, he usually was attached to me. Mattie was a precious bundle and from this picture he also was an angelic one.


Quote of the day: Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, I will try again tomorrow. ~ Mary Anne Radmacher

Anyone who has had to face a challenge or obstacle, would probably admit that it wasn't possible to manage without courage. Courage is the quiet character that is needed to persevere when things seem at there worst, or with no end in sight. We all have defining moments to reflect upon, and perhaps my greatest one was helping Mattie battle cancer and then to help him die. This battle remains so fresh in my mind, which is why having to deal with my current unknown situation is causing me great angst. Within the last three weeks, there have been many feelings that "roar" within me, but listening to my "quiet voice" is truly hard. 

I spent part of the day working on the Foundation's Symposium. I have assembled a great group of psycho-oncologists to work with, and I am truly enjoying my interaction with the psychologist from Children's Hospital of Philadelphia who I appointed as our scientific chair for the event. Over the past two weeks, I have targeted organizations and individuals to personally invite to the Symposium and I am thrilled so far with the response, and hope that is indicative of the need for such a venue.

At lunch time I met up with my friend Tina. Today was Tina's birthday, and we had a lovely time together over food and conversation. Despite how I am feeling, it made me feel good to make someone else happy. Lunch was the highlight of my day, because after that I came home and returned to being in a mood, with a bad headache, and simply not feeling well. When Peter got home from work, he found me in pajamas and in bed and quickly assessed dinner was not getting made by me. So instead he made it, brought it upstairs, and we watched a movie together while I ate in bed. Not a typical occurrence for me, but then again the last three weeks have been sheer havoc for me.

Thursday, February 23, 2012

Thursday, February 23, 2012

Tonight's picture was taken in June of 2002. Mattie was only two months old. However, when I look at some of Mattie's baby pictures he seemed so contemplative. I remember in kindergarten Mattie got a progress report from his school, and that first semester his art teacher described Mattie in the report as an "old soul." I think Debbie was indeed right, because in many ways Mattie just understood and felt certain things that were beyond his years.


Quote of the day: How far that little candle throws his beams! So shines a good deed in a weary world. ~ William Shakespeare


"So shines a good deed in a weary world!" I love this Shakespeare quote because I do believe it is the small things we do that make a large difference to people. It is ironic that I should reflect on this quote this evening, because recently one of the business school groups we are working with this semester submitted an analysis to us about the Foundation. One of the comments they had for us was that to grow larger we need to conserve our money for bigger and more nationally focused projects. Rather than for example, raise money to support a child life program at one hospital. Though I understand what they are saying in theory, I did push back at this group because I believe making a tangible difference (even if it is at one hospital) in the lives of children and their families battling cancer is imperative and at the end of the day, it is this that makes me feel good about what we are accomplishing. In order to have a national presence, I strongly believe a local one is needed first and also I find through working at Georgetown I continue to be made aware of the needs of families. Which is very grounding and humbling.

Today I had my first acupuncture experience. As I was sitting with the therapist for the first thirty minutes going over all the reasons that brought me to see her, I became overwhelmed with my own list. In fact, at one point I paused and said to her that if I were her, I would be thinking how does someone my age present with all of these health issues? She responded by saying that she was not taken aback but was more in amazement that I am dealing with all of this. I learned today that there is a difference between Chinese versus Japanese acupuncture. The therapist I saw today is trained in Japanese acupuncture techniques.

Japanese acupuncture significantly differs from other styles in its delicacy.
The obvious differences between Japanese and, say, Chinese practice, are that the needles are far finer (using needles barely thicker than a human hair), and that they are inserted often barely deeper than 1 or 2mm, with an absolute minimum of manipulation (thankfully because I have heard from others that this can be painful!). These techniques demand far greater precision and care than normal acupuncture. The therapist worked very hard today at trying to reduce my headache. I had needles in my feet, legs, arms, hands, stomach, neck, face, and head. I must admit that this hour long session did help to relax me, but my head is still pounding. I have had daily headaches for ten years now, so I cannot imagine they will go away quickly, yet I am hoping over time they become more manageable.

I have Foundation work piling up all around me, and yet between my headaches and my latest medical concern, I feel very distracted and on overload. I cannot seem to get relief from the headaches and they are absolutely debilitating in addition to other physical symptoms I am contending with. What weighs on my mind, and will for the next several days, is whether to have a biopsy next week. For those of you reading along and for writing to me, I thank you!

Wednesday, February 22, 2012

Wednesday, February 22, 2012

Tonight's picture was taken in June of 2002. Mattie was very fond of his car seat. This was where he actually slept at night, because he hated lying flat or being in his crib. When he began to eat cereal at four months of age, he accomplished this in his car seat too. I am not sure what we would have done without this car seat, because Mattie was so turned off to his crib, stroller, and swing. In this picture Mattie was only two months old and from my perspective he was smiling and laughing at me. Though I recall his pediatrician insisted that babies at this age can't smile and felt that this gesture was simply "gas." Regardless, from my point of view, Mattie was tracking me and smiling!


Quote of the day: The future will be different if we make the present different. ~ Peter Maurin


Peter and I had our last meeting with the Georgetown University business school class. The Foundation served as the class' community based learning project this semester, and we were invited to class so that each student group could present to us, their "client." Each group developed strategies to help us grow, to enhance our visibly, and to expand our use of technology and social networking. I must say that I came into this class today very tired and extremely stressed out given my past three weeks. Naturally the students are not aware of what I am worried about, nonetheless, my medical concern does cloud every aspect of what I do and how I live my life right now. So I admit to being a little more sensitive and irritable. The Foundation for me is personal and emotional, and in order to work effectively with me on brainstorming the enhancement and development of this organization, I need to feel that others have a certain level of buy in and connection to our story, to Mattie, and the battle children and families face each day when contending with childhood cancer. I did not feel connected to this group of students at all emotionally. They certainly presented some interesting ideas and we look forward to their final reports, but I had to step back and understand the differences in personality, priorities, and the make up of a business graduate student versus my counseling graduate students.

At the end of class, I took a picture of Peter with the entire class!

After this class session today, I journeyed back to the Lombardi Cancer Center to try to get some answers to my latest debate.... can my mass be biopsied? The sad commentary to all of this is that I am treated with kid gloves because I lost Mattie to cancer. I don't mean that doctors are sensitive to my emotional loss (though some are), but I suspect doctors feel I need to be monitored extra closely because of the simple fact that I produced a son who developed an aggressive cancer and died.

Tomorrow I will have my first acupuncture appointment. That may not sound like a big deal, but you need to understand for me to turn to alternative medicine for pain management, means I am desperate and have reached my limit with chronic pain. I am staying open minded about tomorrow and truly hope that help or relief is on the way.