Saturday, October 12, 2013

Saturday, October 12, 2013

Tonight's picture was taken in October of 2007. Mattie had just entered kindergarten the month before. Yet in one month's time Mattie made friends in school. Buddies who remained with him through his cancer battle and still reflect on their friendship with him
today. That weekend, Mattie's school had its yearly fall festival. Mattie had a wonderful time at the festival and as you can see he even got his face painted (pictured from left to right are Bethie, Mattie, Kazu, Campbell and Livi). Painted on his face was, "Go Saints!" Saints being the school's mascot. Mattie ran around with friends that day, went on the moon bounces, and just had a great old time. We never imagined that this was going to be Mattie first and last school fall festival.


Quote of the day: I dare say it is rather hard to be a rat,” she mused. “Nobody likes you. People jump and run away and scream out: ‘Oh, a horrid rat!’ I shouldn’t like people to scream and jump and say: ‘Oh, a horrid Sara!’ the moment they saw me, and set traps for me, and pretend they were dinner. It’s so different to be a sparrow. But nobody asked this rat if he wanted to be a rat when he was made. Nobody said: ‘Wouldn’t you rather be a sparrow? ~ Frances Hodgson Burnett


Burnett happens to be an author I always loved, right from the moment I read her book, The Secret Garden. Her quote captures your attention as she writes about a rat, Sara, and a sparrow. One may want to stop reading after seeing the word rat, but when you put all the words together, one realizes that what she is saying is quite meaningful. When a rat is born, no one gave it a choice as to whether to be a rat, a sparrow, or anything else for that matter. In a way, this notion could be translated down to any one of us. When we were born, no one asked us whether we wanted to be or go through_________? I left it blank purposefully, because for each of us, how we fill in this blank is different and unique. Just like the rat didn't elect to be a rat, I did not elect to be a mom of a child with cancer.

The quote captures what so many of us immediately learn when you or a loved one is diagnosed with an incurable illness, an illness that ultimately produces a steady decline and death. I am not saying that the only way to achieve such awareness is through experiencing a terminal illness. I am sure there are many other viable options that are equally painful and can cause one to re-evaluate life, its purpose, and future. However, since Mattie's blog is written from the context of cancer, this is the lens I am using here. Burnett's quote may sound funny or even cute because she uses a rat, an animal many of us despise. Putting the rat aside, the moral of the quote is that there are many things in life that are out of our control. Things happen to us whether we want them to or not. The question is what are you going to do with what life brings you?

Most of us do not live in the Disney movie Ratatouille in which a rat can look and act like a rat, but in reality be a master chef. In the real world, a rat is a rat and a mom who lost an only child to cancer is just that, childless. There are many people I meet who tell me that they don't know how I do it! They tell me if they were me, they wouldn't be functioning. I get it, yet there really are two options. You either give up living or you find a way to progress on. With that said, it takes a great deal of healing to want to re-engage with the world and accept the fact that so much is out of our control. I once lived with the notion that if you worked hard, lived a good life (however you would like to define that), and did all the right things, that this would influence your life's results. All that went out the window when Mattie died. So now I have to figure out what do I really have control over, what can I really influence, and how can I accept that there are many injustices in the world (cancer being one of them, but the list is long) all around me?

Tonight I have more questions than answers and the irony is this train of thinking is the result of seeing the Burnett quote. Though I am defined by more than just cancer, the simple fact is cancer was not only a disease that ravaged Mattie. It is a disease that remains alive in Peter and me. It impacts what we see, what we hear, and how we feel about all our interactions with others and the world.

Friday, October 11, 2013

Friday, October 11, 2013

Tonight's picture was taken in October of 2007. That weekend, as we did most weekends in the Fall, we took Mattie to a Fall Festival. I remember the first two years we took Mattie to a festival, he had to be around 3 and 4 years old, and he was deathly afraid of these huge hay slides! However Peter would sit Mattie in his lap and they would go down the slides together. Mattie enjoyed the slide with company. However, as this 2007 photo illustrated, Mattie wanted to go down the slide alone. It was a first! If you look closely, Peter was at the top of the slide bending down and most likely got Mattie positioned to go down. I of course met Mattie at the base of the slide. We watched Mattie like a hawk and always tried to keep him safe and protected. The true irony of life.


Quote of the day: We bereaved are not alone. We belong to the largest company in all the world--the company of those who have known suffering. ~ Helen Keller


On Tuesday I reported about my most recent trip to see my urologist! Visiting her office is never an easy process because chances are I always run into someone with an attitude. Honestly attitude needs to be checked at the doctor if one decides to work in a doctor's office. People are too sick, tired, and worried, to have to expend energy on thoughtlessness and insensitivities. My Tuesday posting triggered many emails to me, telling me how you related to my story, with your own doctor visits! That is a sad commentary in and of itself because what it points out is there is a major system problem and my Tuesday experience is NOT an isolated incident. Something that I knew, but your emails just further solidified it in my mind.

My friend and colleague read my posting from this week and she sent me a New York Times article entitled, Who will heal the doctor?! I have to tell you when I read the title and the first paragraph of the article, my initial reaction was......... who is going to heal the doctor? Who cares?!!! I admit to being patient and family centric. But this article brings to light a very crucial issue..... if the doctor isn't well supported and given a sense of autonomy to practice then he/she can't possibly do an effective job with a patient. It all comes down to training of medical doctors and also to our medical leaders to stand up and fight for their profession. A profession that is regulated by health insurance companies, paper work, and unreasonable demands to see a certain number of patients per day. The article also clearly points out that medical programs inadequately provide opportunities for students to verbalize feelings and share emotions about work, cases, and how it impacts them. I would have to tell you that feelings and emoting them do NOT come naturally to all of us, these skills need to be taught and emulated just like learning about anatomy and physiology. If students see their mentors devoid of emotion or worse if students are penalized for having feelings, guess what this produces???!!! A medical robot, not a provider of care to human beings.  

I have a feeling Denise sent me this article because so much of what is reflected in the link below are sentiments I expressed in Tuesday's posting. I am not a medical doctor, but have interacted with enough doctors and lived in a hospital for a long enough period of time to fully qualify myself to make a statement about the inadequacies of our health care system. The article quotes a primary care doctor, who stated, “by far, the biggest barrier to being a compassionate healer in our current working environment is time. We simply don’t have the time we need to do our jobs well. And we all lose."

Two other paragraphs in the article caught my attention. They are:

This is a common misconception. As I reported, being emotionally attuned can help a doctor, or anyone for that matter, function better. Indeed, the notion that a doctor is an objective, Spock-like, scientist whose job is to come up with the one best solution to your problem is a view that is out of step with research on medical outcomes and much of what is known about the therapeutic aspects of the patient-doctor relationship. People are not widgets; medicine cannot be reduced to cutting and sewing or putting chemicals into the body; it’s full of mystery. Doctors can often make a difference in how patients feel simply by being caring and concerned.

More and more people are living with incurable diseases that would have killed them a short time ago. As the population ages, more health care will be directed to patients with chronic or terminal conditions. For doctors, care will become less a question of curing a disease than helping their patients to live as well as possible in the face of their illnesses. That’s not the job they train you for in medical school. But in this emerging context, the doctor patient relationship becomes even more central. It may be the quality of this relationship that determines whether doctors can cope with, and derive satisfaction, from care that involves far less clinical certainty or control.

These two paragraphs resonate with me because first, the patient-doctor relationship doesn't only benefit the patient. It also is a protective factor for the doctor. Patients who feel they relate to their doctor and that their doctor listens to them, are going to find that patients are more candid and report more accurately about their symptoms. In addition, as the article mentions, doctors also need a reason and a purpose to practice. Part of what gives us all purpose in life is the special connection we make to others.

Secondly, I saw this with Mattie's treatment journey, doctors were all on board when we were fighting and doing surgeries and chemotherapy. When the fighting ended because it was clear Mattie was losing the battle, doctors looked frazzled and in a quandary. That is because they are trained to heal and do. But many medical situations for both young and old lead to end of life care, and doctors feel this is where their tour of duty ends. After all how do you help someone die?! I bet there is NO course on this in med school!!!! How can a doctor still be a healer in such a case? HOW???????? Well if a patient-doctor relationship is established then this simple human connection I believe will take over and doctors will then see that there are things to be done such as providing comfort, support, pain management, and to help understand the patient's hopes and wishes of how she/he wants to die. These are huge to dos and are a crucial part of the field of medicine!

Needless to say, I got a lot out of reading this article, and I hope you do as well. Also the responses below the article are just as fascinating as the article itself!

ARTICLE: Who will heal the doctors?
http://opinionator.blogs.nytimes.com/2013/10/02/who-will-heal-the-doctors/?_r=1
 

Thursday, October 10, 2013

Thursday, October 10, 2013

Tonight's picture was taken in October of 2007. Mattie was five years old and we were invited to a preschool friend's Halloween party. That year Mattie wanted to be an air force pilot. I remember going with Mattie to pick out this costume. At the party, there were all sorts of games for the kids. One game was to wrap people up as mummies. Myself and my friend Julia volunteered to be wrapped up. Check out Mattie's face. He is on the bottom right hand side of the photo near Julia in the yellow shirt. His expression was priceless!!!


Quote of the day: Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has. ~ Margaret Mead


Today was another stellar grey and rainy day in DC. Despite the torrential rain, I got up and out to my zumba class. I needed to move around after being home for days. Later today, Peter and I will be connected by phone to a conference in Dallas and present to a group of about 50 psycho-oncology professionals our mission and vision for the Foundation on a national level. The conference is in Texas, which is clearly on a different time zone from DC. I have been thoroughly confused as to the time we are being asked to present, despite confirming it yesterday. We agreed on 3pm EST. So Peter and I both called in and we waited on the line for 30 minutes. Through the process of elimination and emails, we determined that our call time is really 5pm. Two hours off, I chalk that up to a Vicki moment. Certainly for those who are used to conference calls, this is no big deal. You just get on the phone two hours later!

However for those of you who know me, you know that I strongly dislike the telephone! I had to psych myself up to get on the call at 3pm! Now I will have to do it again at 5pm. Mattie conditioned me as an infant to keep my calls short or not make any at all. This desire only became more pronounced when Mattie was battling cancer. The phone ringing and me being distracted from him while in the hospital, made Mattie very anxious and very unhappy. So much so that with each hospital admission, I literally disconnected our room phone from the wall! Unfortunately my dislike for the phone did not heal or improve four years after Mattie's death. The ironic part is prior to having Mattie, I was a BIG phone talker. I could talk for hours. 

So the idea of today's conference call to people I don't know and can't see was beyond daunting. I am not sure it is a fear per se, but it is a very uncomfortable feeling. Especially when presenting about Mattie and the work we are doing. I prefer to see people's faces, to read them as I am delivering content, and from what I am observing I can tweak my speed and even what I am saying or how it is delivered. This same dynamic can't be done by phone.   

Peter and I presented for 30 minutes, we think it went very well. We also had the chance to sit on the rest of the two hour call and hear about the standards in more detail. Also at the conference was a scientific poster created about our national project. Presenting the poster were four members of our team:
Andrea Patenaude, Dana Farber; Wendy Pelletier, Alberta Children's Hospital;
Bob Noll, Children's Hospital of Pittsburgh; and Mary Jo Kupst, Medical College of Wisconsin! So I am happy to report that it was a successful day for the Foundation both logistically on the ground and also through the phone wires!

 

Wednesday, October 9, 2013

Wednesday, October 9, 2013

Tonight's picture was taken in October of 2006. We took Mattie to one of our favorite fall festivals in the area. As you can see Mattie loved the whole experience with a wheel barrel and walking through the patches to find just the right pumpkin. Or I should say PUMPKINS. Mattie loved everything pumpkin, even eating pumpkin. Since Mattie died, I have yet to buy a pumpkin for the fall season. Somehow it just isn't the same nor does it have the same significance to us.


Quote of the day: It was the word 'late' that did it. Such a stupid word to use of the dead, implying that they would be with us today if they hadn't happened to be delayed in traffic somewhere... ~ Emma Donoghue


It was one of those cold, grey, and rainy days in DC. The kind I truly find depressing. To me nothing is greater than DC in the summer time. It seems like during that season we are always promised hot and humid weather. Of course, I am in the minority, but it could be this way year round and I would be thrilled. But just like DC can have its warm and humid season, it also is well versed in GREYNESS and gloom. I never cared for this kind of weather, but it is much worse now that Mattie is gone. It just seems super depressing and doesn't inspire you to want to get outside and interact with the world.

The work that I do on a daily basis gives me great flexibility in the sense that I do not have to report to anyone and things are on my own time schedule. I realize that could wreck havoc in some people's lives because perhaps nothing would get done. But unfortunately I am a very disciplined person and running a Foundation is not always the best match and me, since I could literally work 24 hours a day, and during some of our busy moments, I practically do. Which then usually leads me to getting sick. I did not have cancer, Mattie did, and yet from his battle I find that my immunity has been affected. Now under times of pressure and stress for prolonged periods, it is almost a given that I am going to get ill.

I spent the day at home working on all sorts of Foundation items and tried to remain still in order to recover. It is hard to believe that tomorrow afternoon Peter and I will be virtually transported to Dallas, TX. We will be addressing a group of psycho-oncologists at the Children's Oncology Group conference and walking them through Mattie Miracle's vision for a psychosocial standard of care. We will also update them on just how far we have come since March of 2012. In our November Foundation newsletter, I will be highlighting our national accomplishments and where we are at with the standard. Needless to say, it all started with my curiosity about psychological research as it related to childhood cancer. So back in 2010, I did a search on childhood cancer and trauma. From my searches a name kept popping up, Dr. Anne Kazak. So one day on a lark, I decided to email her and tell her how much I appreciated her research and wanted to know if she would be willing to talk with me about our Foundation. Anne responded right back and she has been a crucial member of our team ever since. Anne connected us to another psychologist, who connected us to another and another. So now we are working with a core team of five, with about 40 psycho-oncologists from all over the country focused on developing a standard of care. Talk about a grass root effort, but sometimes that is the only way to get true change accomplished.
 

Tuesday, October 8, 2013

Tuesday, October 8, 2013 -- Mattie died 212 weeks ago today.

Tonight's picture was taken in October of 2004. Mattie was two and a half years old and was beginning to understand the whole notion of the Fall and especially Fall Festivals. Somehow when Mattie was born, I got into the habit of carrying a small camera in my purse. It wasn't necessarily a conscious decision but I am so happy now looking back that I documented Mattie's life journey.


Quote of the day: Disappointment is a sort of bankruptcy - the bankruptcy of a soul that expends too much in hope and expectation. ~ Eric Hoffer


Just when I think it isn't possible to be MORE disgusted or disappointed in the medical profession, I have a day like today, which further cements all my negative feelings in stone!!! This morning I had an appointment with my urologist, a woman I have seen for four years now. Each time I visit with this woman, I am either perplexed by her or her office staff. But since she seems to be managing my condition, I put up with her. Today, however was a different story.

Though I live in the District of Columbia and her office is also in the District, one would think this would be an easy commute. However, it is not! She works at my least favorite hospital in the area. Mainly because it takes me forever to cross the city to get to it. What normally would take me 45 minutes to get from North West, Washington, DC to North East, Washington, DC, today took me TWO hours. There was a major traffic jam in North East and based on where I was, I was stuck, I had to ride it out. So I called the doctor's office to alert them about my appointment and that I was going to be at least 30 minutes late. The receptionist asked if I was a new or a returning patient. When I said returning, she said NO problem! 

When I finally got to the hospital and walked into the office, this same receptionist told me the doctor couldn't see me today because I was 40 minutes late. Mind you I called, but putting that aside what irritated me was I told her I was symptomatic and someone needed to see me. Basically I wasn't leaving unless I was seen. She did not like my attitude and the feeling was mutual. After leaving me at the reception desk waiting for ten minutes, she came back out with her office manager. Mind you, we were having this open dialogue about my health in front of other patients, so much for HIPAA! Which is a joke in and of itself. If you doubt me, then I welcome you into a hospital setting anytime. Conversations are happening in the HALLWAYS between doctors, patients, and families for the world to hear!

Any case the manager was just as delightful as the receptionist. The manager quoted me policy. Of which I then let her have it. From my opinion, this was not how the office should treat a patient of four years who is always on time for appointments. Let's not mention the fact that every time I come, I am waiting up to an hour to see the doctor, well past my appointment time. But that is irrelevant. I asked the manager if I heard her correctly, which was that I was to go home and not be seen despite being in pain and symptomatic. She finally caved and got me into see the nurse, because she could see she had a problem on her hands. The office manager was the second gatekeeper I dealt with today (receptionist being the first!).

Once I got in to see the nurse, she said it would be impossible to see the doctor today because I was so late. She did a urine culture and was going to send me home (to wait a few days for the culture results), despite running a fever. In fact, the nurse did not listen to me at all. I told her my symptoms when I first walked in the door and I told her it was insensitive of her office staff to not even take into account I wasn't feeling well. I assure you driving for two hours without using a bathroom when having bladder symptoms is close to impossible but they did not care. After the culture, the nurse sat down with me to take a history and the first thing out of her mouth was.... you don't have pain, right?! Are you kidding me???!!!! How I did not explode is beyond me! I wanted to escort her to have her hearing and eyes checked! If you couldn't hear I was in pain after I blatantly told you, then you certainly could see it!!!

After the history was done, she was going to dismiss me. I told her to go back and let the doctor know that if she doesn't see me and prescribe me something today, I was going to go home to pop a concoction of antibiotics that I have. Needless to say, guess who saw the doctor and got a prescription today?!

Honestly, our medical system is deplorable, and I have health insurance. There is an art form about getting through gatekeepers and sometimes when you aren't feeling well, you just can't muster the energy to advocate for yourself. But if I didn't today who was going to? Sad that it comes down to screaming, it is the only way to be taken seriously!!! I am continually disappointed and wonder why people get involved in the health care industry if they do not intend on helping people? Does one become immune to seeing people in pain?! I think it is simply unethical and inhumane especially when people aren't feeling well, they are already in an emotionally and physically compromised state. I do not know what the answer is, but it seems to me something is very, very wrong in the training of our health care providers. Health care has become a business, run on results and numbers. The only problem with this is that people are complex beings that have feelings. We are not cars which have a diagnosable issue that is simply mechanical in nature. I truly believe medicine would be a much better field if more listening took place and that doctors actually connected with their patients. The art of learning about listening, communicating, feeling, and understanding human dynamics have got to be devoid in most medical and health care programs. What a shame that emotions are negated and looked at as futile. I suppose the only true way medical professionals will learn about the art of delivering fine health care is having to experience a personal medical crisis. I have a feeling this will be a rude awakening that may just influence how they treat their patients moving forward.  

Monday, October 7, 2013

Monday, October 7, 2013

Tonight's picture was taken in April of 2007. You have to love the beauty of Mattie..... wearing a Christmas sweater in the spring!!! Mattie absolutely loved decorating our big window in our living room. As you can see we had fish and pipe cleaner creatures all over the window. However, Mattie was seasonal and loved to decorate the window with pumpkins during Halloween, hearts during Valentine's day and so forth. Though Mattie is no longer with us, I have many of his items still attached to our windows.


Quote of the day: Some people walk in the rain, others just get wet. ~ Roger Miller

Today was a very depressing weather day in DC. Torrential rains, clouds, and greyness all day. I never liked grey days before, but since Mattie died I really despise them. As if the clouds are connected to my mood. I was trading text messages with my "friend in cancer" today (a fellow mom who lost her only child) and like me she finds the rain depressing. It seems to highlight just who we lost in our lives. Mattie loved the rain and snow. Or I should say, he loved following the weather. I attribute this to Peter, who is fascinated by the weather and would take Mattie outside to examine the clouds and experience the wind, rain, and snow. Mattie and Peter got what I call "jazzy" when a storm approached!

As Miller's quote points out, there are two groups of people in this world, and I definitely fall into the category of getting wet in the rain. Perhaps the rain really highlights the difference between optimists and realists/pessimists. Us realists view the rain as necessary of course, but we don't like walking in it, nor do we like the consequences of rain (traffic, accidents, wearing rain coats, needing umbrellas, etc). The irony is when it rained Mattie wanted to go outside in it and I naturally accompanied him with my umbrella. To Mattie, a child, rain was fun, it provided a new medium to play with and in, and also it was entertaining to listen to it falling on the ground.

Though I haven't been feeling well, I did run a couple of chores this morning. Back I went to Goodwill to drop off 6 more bags for donation. That puts us at over 50 donated bags so far from Mattie's room! There is more to go believe it or not. However, when I returned home I continued working on Foundation items. On Monday, I head out West to visit my parents, but I can't do that without certain things in place. While working on the computer, in honor of Mattie, I had our front door open to listen to the rain falling on our deck. Mattie would have been very happy to see this, because in many ways Mattie expanded my horizon. Prior to Mattie I gravitated to very female oriented things. When I had Mattie, I had a steep learning curve but I grew to appreciate the beauty and fun of nature, trains, things with wheels, and of course building with blocks and Legos.

Sunday, October 6, 2013

Sunday, October 6, 2013

Tonight's picture was taken in October of 2007. Mattie just LOVED fall festivals, jumping and playing in the hay, and of course pumpkins. In so many ways this was a glorious photo, because when Mattie was a toddler he was intimidated to play in sand and he most definitely wouldn't have gone anywhere near hay. By the time Mattie entered kindergarten, he had truly developed physically and emotionally and we thought so many of the challenges we experienced were behind us. Unfortunately we had no idea what a true challenge was until July of 2008.


Quote of the day: What is success? I think it is a mixture of having a flair for the thing that you are doing; knowing that it is not enough, that you have got to have hard work and a certain sense of purpose. ~ Margaret Thatcher

I am quite sure that all the activity I did this week has caused me to feel very sick today. As my faithful readers know, I have a bladder condition that can flair up at very unexpected times. My goal is to manage to Tuesday when I see my urologist. The irony is when Mattie was born, I developed this condition. I would say for the first year and a half of his life, I lived with terrible pain. However, over time it got better and then I went years without a single symptom. However, the condition resurfaced a month after Mattie died. The symptoms are horrific and despite getting this frequently, I have never learned to manage through this pain, like chronic headaches.

In the midst of pain today, I tried to focus on working! Next week, Peter and I have been invited to present at the Children's Oncology Group conference in Dallas, TX. The Children’s Oncology Group (COG), a National Cancer Institute (NCI) supported clinical trials group, is the world’s largest organization devoted exclusively to pediatric cancer research. The COG conducts a spectrum of clinical research and translational research trials for infants, children, adolescents, and young adults with cancer.

We finalized our Power Point presentation today for Thursday's presentation and yesterday we mailed the scientific research poster that was created by our psycho-oncology research team to Texas. The poster looks incredible and highlights what Mattie Miracle has accomplished so far on the national level with a standard of care. Somehow seeing it in print made quite an impression on me and I hope those who see it become equally excited about our vision.