Saturday, February 11, 2012

Saturday, February 11, 2012

Tonight's picture was taken in December of 2008. Mattie was invited to his "girlfriend,"  Charlotte's 7th birthday party. Mattie had never been to a Japanese restaurant before but he had a good time, enjoyed the food and his time with Charlotte. As you can see Mattie sat right next to Charlotte and was trying to help her blow out the candles from where he was sitting!

Quote of the day: Happiness is an attitude. We either make ourselves miserable, or happy and strong. The amount of work is the same. ~ Francesca Reigler


I find tonight's quote to be very interesting. Because I would say I highly disagree with it! Under certain circumstances misery just comes upon us. Such as, and this is certainly not an exhaustive list: childhood cancer, other diseases, natural disasters, and traumas. We do not have to work very hard to achieve misery, especially when these factors are out of our control. Whereas, quite on the contrary, striving for happiness and remaining strong under life's most challenging circumstances takes not only work but superhuman efforts at times.

It was a strange weather day in Washington, DC. Peter and I worked most of the day away on Foundation items, but by the afternoon, we decided to take a walk on Roosevelt Island. Our timing was quite interesting, because as we began walking, it started to snow and the wind was whipping. As you can see, Peter snapped a picture of me in the wind and snow. In the background, which you can barely see are the spires of Georgetown University. Because of the white out conditions it was hard to see this landmark building on the University campus.

At the end of our walk, I snapped this picture of the bridge leading over to Roosevelt Island. To me there is a magical quality to this picture, with the snow drifting through the air and a tree branch reaching out toward the bridge. To me this bridge symbolizes a passage over to a peaceful part of land, land which Mattie used to enjoy exploring and traversing.

I appreciate the emails of support and tomorrow, Sunday, I will be up bright and early to be at Georgetown Hospital at 7am. Really not my time, and naturally I can't help but think back on all the times we took Mattie for an MRI at this exact location. Too many times, and each time, we were always the recipient of bad news. Seems to be a trend with us and the ironic part about all of this is if I never took a ct scan on February 1, no one would ever know I had an issue.

Friday, February 10, 2012

Friday, February 10, 2012

Tonight's picture was taken in August of 2009, a month before Mattie died. As you can see he was having trouble breathing by that point and needed oxygen at all times. Featured with Mattie in this picture was Jocelyn, Mattie's Osteosarcoma buddy, and Denise, Mattie's social worker. As I was sitting in this clinic today taking with Denise, I couldn't help but remember this exact moment captured in this photo.


Quote of the day: What happens to a person is less significant than what happens within him. ~ Louis L. Mann

What happens within a person as tonight's quote aptly points out is not only vital to a person's character development but it is crucial to defining one's mental health and well-being. Sometimes we do not focus upon what we are thinking and feeling inside, because we are distracted by a host of other priorities. It is when we get sick and have to reprioritize our lives, do we then stop and take stock at what we are made of and basically what lies within!

This week has been yet another moment in my life in which I have had to re-evaluate myself, life, and the strength I need to manage again through the medical system. A system which is beyond flawed and in need of an overhaul. If I had a ton of money, I would start right back at square one, which is revamping medical education and training. The importance of empathy, listening skills, and positive regard for a patient's needs and concerns needs to be integrated within medical curriculum. If it currently exists in medical academia, then it isn't effectively being communicated nor applied based on the resulting products I have unfortunately have had the distinction of working with. I thought families of children with cancer needed advocacy and support with psychosocial care and access to services, but what I have learned this week is it is the WHOLE BLOODY SYSTEM. The atmosphere of support for an adult cancer patient is appalling and most likely why there is NO standard of psychosocial support (besides the fact that most physicians don't think it is important or relevant) for children with cancer is because there isn't one already established for adults! Amazing beyond amazing to me! Yet it confirms my suspicions.

Today was an emotional roller coaster. The physician I saw yesterday called me with what I perceived as good news. So I went into my meeting at Georgetown Hospital feeling more positive. Well that is until I consulted with the actual doctor. Now I feel as if I am back to square one and needing more testing. So I head for a MRI on Sunday at 7am. What shocked me however, is he handed me the script for the MRI with no intention of helping me set it up. That may not sound shocking to all of you, however, when Mattie was being treated at Georgetown, we had a whole team of people there to assist me with these tasks. Nothing like this exists in the Lombardi Cancer Center for adults. So I literally walked out of that clinic and text messaged Dr. Aziza Shad, the director of the pediatric cancer center at Georgetown. She is also the doctor who assisted us the week Mattie was dying. This is a doctor extraordinaire, who literally will answer calls and questions from patients at ANY time of day! Though Mattie is NO longer alive, when I have a problem Aziza is the first person I text message. NO matter where Aziza is in the WORLD, she text messages back within minutes. So literally picture me walking out of one clinic with my Blackberry in hand typing to her that I need help coordinating an MRI. Seconds later she wrote me to meet her in her clinic. As I walked into the clinic, she grabbed my script and insurance card and marched herself up to the MRI department and got me an appointment. Naturally I could have called for the appointment myself, but I know how the system works. I wouldn't have gotten a Sunday appointment, maybe next week at best! As Aziza says she has faith for both of us, since I gave up on faith and prayer a long time ago. In fact, you will rarely EVER hear me say "keep me in your prayers." 

While Aziza was working her magic, I had Mattie's nurses and Denise, his social worker, sitting with me. If it weren't for Mattie, I would never have met these amazing women. Women who stopped everything to talk with me for over an hour. I learned today that Katie, one of Mattie's HEM/ONC nurses has her infamous grey sweater hanging over her office chair. She never wears it anymore, yet she can't part with it. For my faithful readers, you may recall that Mattie loved Katie's sweater and would use his "Curious George" left leg and foot to remove the belt from her sweater while she was examining him. In fact one day, he kept her sweater belt for the entire day in his possession. Whereas, Denise was telling me that she still has the flower lei we gave her from the first Mattie Walk in 2009, when he was still with us. She says the lei has dried up but she just can't part with it. I tell you these stories because to me these are very meaningful signs. These are signs that I feel deeply within, signs that tell me we were all connected to each other not necessarily just through a medical process, but we became important to each other. After all friends and family save and cherish memories and mementos like this. So today just by instinct, when I had a problem, I turned to my medical family to help me and Peter once again. They did not disappoint, which is why I feel very convicted to work through the Foundation to financially support several incredible people who make a difference in the lives of their patients and families each day. For these fine professionals, working in a hospital isn't only a job and their income. This is their way of life and being.

Thursday, February 9, 2012

Thursday, February 9, 2012

Tonight's picture was taken in April of 2003, at Mattie's first birthday party! We invited over family and a few friends to celebrate the day, and based on Mattie's distinct preference he had an Elmo party. Mattie loved Elmo, the red character on Sesame Street. Mattie would literally stop in his tracks whenever he heard Elmo come on TV. Mattie was glued and mesmerized by this furry red ball! I can recall this day as if it were yesterday!


Quote of the day: The most important thing in this world is to learn to give out love, and let it come in. ~ Morrie Schwartz


There are two things Mattie's cancer has taught me to do quite well. The first thing is I have become an excellent advocate. I had these skills to begin with, but through an osteosarcoma battle I have perfected them. If you need a case fought, I am your girl. Second, I have also learned that no medical doctor is going to make me feel inferior or belittled. I have had enough experience with this type to know that if I am feeling this way, to trust my instincts and push right back at the doctor.

When I visited the newest medical specialist in my life today her nurse asked me how I was able to get to see the doctor so quickly, considering I just got my ct results yesterday, after 5pm. My response was, I know the right people, and that I also have a big mouth. I said to the nurse, the harder you fight and speak up, the more likely you will get attention. There were times when Mattie was so sick, that I literally went ballistic on residents and even attending physicians. I was never cruel or out of line. On the contrary under great duress, there were times I was absolutely sharp and brilliant (and I don't use that term lightly). My role was to hold doctors accountable and God forbid if you did not treat Mattie appropriately or take our concerns seriously and treat us as part of his care team, I was going to be your worst enemy. However at the end of the day, people respected Peter and I and I can say we both did our utmost to try to save Mattie.

Naturally I take all this cancer baggage with me during any medical appointment or visit. Mattie's cancer has made me hypervigilant to things that wouldn't have bothered me in the past. I took a ct scan last Wednesday. Yesterday in the mail I received the results. The hospital I took the scan allows patients to receive the radiology report directly if you sign a paper requesting the documentation. So literally I got the report and the results before my urologist. I took the scan at one hospital, and my physician practices at a completely different hospital. When my physician learned that I got the results before her she was very upset. She called me last night at 11pm and again this morning at 7:30am. I naturally understand why she is upset, because she should have been alerted first, but at the end of the day, this is all semantics to me. I don't care who got the results, I just care that I know what they are. My doctor and I had two arguments about this point, and I told her she can go fight and argue policy with my other hospital, but right now this isn't helping me. My urologist is a competent and capable woman, but we do not always have or appreciate each other's social skills. So literally today I had to tell her to stop talking and to listen to me. Yet she continued to discuss with me why it was important for me to call her office when I have a concern rather than reach out to others. My response to her was when I received the report, I reached out to those I trust. My urologist did not care for that response, but then I had to remind her, I lost my son to cancer and for me trusting a doctor is tantamount. By the time we finished talking she understood me quite well and mobilized forces to get me the appointment today.

Today I went through more testing, some of which was down right uncomfortable. But I know this is the process one needs to follow in order to get a handle on the issue. But as I learned back in 2008, it is the waiting and wondering that is an absolute killer. Tomorrow I head to a different hospital to get a second opinion. I had all sorts of meetings today, but I cancelled every one of them. My head was just unable to concentrate, and naturally tomorrow, I too will be unable to do anything productive. Peter and I are both exhausted tonight and it is only 7:30pm, but it is my hope that soon we will have some answers and be able to determine next steps.

Wednesday, February 8, 2012

Wednesday, February 8, 2012

Tonight's picture was taken in March of 2007. We met Peter's parents in the Florida Keys and while touring around, we saw this interesting shop that had a man made out of sea sponges outside. It captured our attention, but as you can see, Mattie was less than happy with me. He did not want his picture taken and his facial expression speaks volumes. Typically I try to post pictures of Mattie smiling, but just like any child, he too had his moments where he did not want to participate or go along with the plan.   

Quote of the day: Not what we have but what we enjoy constitutes our abundance. ~ J. Petit-Senn


As I was making our bed this morning, I noticed a picture of Mattie on Peter's nightstand that was not there the day before. In addition to this picture, I found a folded world map, underneath it. I thought those two additions to the nightstand were odd, so I emailed Peter about it at work. I expected him to say he found those things, or came across them and put them aside on his nightstand. However, that is not what he told me at all. He has NO idea how those two items got there this morning. So what is one to believe? I didn't put them there, Peter didn't put them there, and certainly my clever calico couldn't possibly achieve this feat. With an absence of a sound explanation, I take these items as a sign from Mattie. A sign that he is with us and perhaps is around us exploring the world. I can only hope.

Many of my faithful readers know I haven't been feeling well for several weeks now. Yet I am very good at living with chronic pain, and have a way of working through it, despite my issues. However, today I received some test results that I wasn't expecting and therefore, will be spending the remainder of the week trying to see other doctors and figure out next steps. So I am signing off for tonight and as always I thank you for checking in with us and staying connected.

Tuesday, February 7, 2012

Tuesday, February 7, 2012 -- Mattie died 126 weeks ago today.

Tonight's picture was taken in February of 2004. Mattie was dressed up to go to a birthday party. He was almost two years old in this picture and an absolute bundle of energy. He was always on the go and alert. Which is why it seems almost  impossible to accept that he developed cancer four years later. As today marks the 126th week of Mattie's passing, we can't help but remember him and the enormous ways he touched our lives!




Quote of the day: Physical strength is measured by what we can carry; spiritual by what we can bear. ~ Unknown


Peter and I started our day bright and early at Georgetown University. We had a meeting with one of the MBA student groups that we are working with this semester. The group presented us with an idea that incorporated LEGOs into a hospital setting, specifically as a way of getting typically developing children to interact and relate to children with cancer. The ideas were clever and have creative possibility. But one crucial component was missing. This group has no experience working with children. Not having the insight of a teacher or of being a parent limits one's ability to design curriculum and activities to engage young minds. This to me is vital to anything one does.... you must understand your target audience. If you don't, then you need to either read about it, ask questions, and simply get smart on it. Having raised Mattie has given Peter and I great insights into the mindset and interests of young children, and certainly while Mattie battled cancer, we got a first hand view of what was doable and engaging to him while he was sick. However, unless you understand your target population, then you will not know that parents of healthy children may be apprehensive to have their children come to the hospital and see children so ill. In addition, it isn't always feasible for children in the hospital to play with healthy children because of being immunocompromised. Certainly playing with the same toys are definitely not a good idea. So again, knowledge of your population is key because without, the best ideas will fail.

Later in the day, I had the opportunity to have lunch with a friend whose son is a cancer survivor. However, our cancer experiences were like night and day. Not only because my son died and her son lived, but because of the sheer nature of the cancers. Mattie's cancer was extremely aggressive, his treatments were ALL inpatient, and the significant impact on Mattie's physical and mental health were profound. By the time our lunch was over, we could only conclude that we felt differently about childhood cancer. Rather ironic, but I am pointing this out to my readers because you can't assume that every parent who lives through childhood cancer will react, think, and feel like me. Today's lunch was not unusual to me. I had this issue in the hospital while Mattie was battling cancer. Not all parents and I saw the issues in the same light. Which is why when I found Toni, Brandon's (Mattie's big buddy) mom, she was a breath of fresh air. We understood each other, the situation, and were very good at verbalizing the issues, problems, and our feelings. It does come down to the simple fact that we all need to be understood and to feel like we are not alone through a scary and nightmarish process. For me, having Toni and Brandon helped normalize a very abnormal situation and when I felt the need to scream, cry, or isolate ourselves, they got it, no explanations were needed. Which is why we selected Toni to serve on our parent panel at our Mattie Miracle Symposium on March 20. Like myself, Toni is feisty, and it is that passion that is important to tap into because it conveys the true reality of living with childhood cancer.  

Monday, February 6, 2012

Monday, February 6, 2012

Tonight's picture was taken in February of 2004. Mattie was almost two years old here. One weekend afternoon, Peter and I took Mattie to the National History Museum. As you can see Mattie was beyond fascinated by the big prehistoric mammal on display in the rotunda. His eyes were simply glued and what I love was Peter captured that special moment. That moment of curiosity, fascination, and wonderment.



Quote of the day: Life is a series of experiences, each of which makes us bigger, even though it is hard to realize this. For the world was built to develop character, and we must learn that the set backs and griefs which we endure help us in our marching onward. ~ Henry Ford

This is an interesting quote by Henry Ford. Prior to Mattie's battle with cancer and then death, I most likely would have wholeheartedly agreed with him. Set backs and griefs which we endure help us to more forward or at least to give us perseverance to march onward. Yet when I think about childhood cancer, what we have lived through, and what we contend with each day, I would have to say that such traumatic deaths can instead stymie a person. Finding a way through this quagmire of despair is our life's greatest challenge. A challenge that I do not believe enables or gives one the skills and abilities to move forward, or at least not toward the forward/future one had originally envisioned.

I had scheduled a meeting at the Capitol Hill Visitor's Center to meet our contact there who is helping us with the logistics for our Psychosocial Symposium. I had a ton of questions for her and really needed to understand the regulations associated with the building, so that I can alert all our attendees. Being armed with information always puts me more at ease, especially when planning an event in a location that is foreign to me. Because this event is a new undertaking for Mattie Miracle, many of our supporters are not yet clear on its magnitude. However, I must assure my readers, when I tell you that trying to plan this symposium in March, followed by our major fundraiser and public awareness event in May (the Walk) is no easy undertaking. Each one alone is huge, taken together, all I can say is wow. I will be unveiling the nature of the Symposium shortly, but part of the day will entail a congressional briefing followed by cutting edge psychosocial research sessions hosted by leading psycho-oncologists from the North East and Mid-Atlantic regions. In addition, participants will hear from six different families impacted by childhood cancer. It will be a full eight hours of content, and the goal soon will be to reach out to our various communities and extend invitations. 

In the midst of February, it seems amazing that the daffodils are popping up and blooming. We have had several warm days and the flowers are confused!

I would like to end tonight's posting with this picture of two buddies..... Peter and Patches! This picture is an extension of my blog posting from last night. Simply stated, Patches is very attached to Peter and in all reality she is a great companion to him. Which is truly ironic, since I am the one who basically rescued her from the streets of DC. But in her mind, I am simply her chore girl!

Sunday, February 5, 2012

Sunday, February 5, 2012

Tonight's picture was taken in February of 2009. Mattie was in the Lombardi clinic and working that day with clay and a pottery wheel. With Mattie was Jenny, his art therapist, and Whitney, one of Mattie's favorite childlife interns. Art was a vital component of Mattie's life and thank goodness he had it, because it served him well during his 14 month battle. Art helped us connect with others in the hospital in profound ways. In fact, as I walked into the Hospital on Friday, and went down the Childlife Art gallery on the first floor of the hospital, I passed by Mattie's essay on display about his Lego model Hospital Room that he designed. Linda put the essay on a poster, had it framed, and Linda acknowledged that it was written by Mattie Brown. Mattie's presence lives on, in both the first floor (in this essay) and on the fifth floor (in the pediatrics welcome sign) of Georgetown University Hospital.

Quote of the day: The best thing about the future is that it comes only one day at a time. ~ Abraham Lincoln

Today I was suffering with another bad migraine. Since the day Mattie was born, and I was in labor with him, I have not experienced a truly headache free day. I don't even know what that feels like anymore. I have been dealing with headaches for a decade now. Some days are more manageable than others. I spent a good part of the day resting, though that did not help.

This afternoon, I joked with Peter about his relationship with our cat, Patches. Patches follows Peter all over our home. If he is upstairs, she is upstairs, if he goes downstairs, so does she! Patches has a special bond with him and I said I need an animal who feels connected to me in this same way. We both laughed especially after saying I wanted a border collie (which for those who know dogs, know this is a beautiful dog, but a dog that needs to be worked, played with, and challenged). Peter then paused to say that I had that special one of a kind bond with Mattie. It is true. Mattie was close to Peter and I in different ways, but there was no doubt that Mattie was my son. He was emotional like I am, and we understood each other without using words. We also defended each other and the love we shared was in its own way intense and unique. Those who knew us well, were very aware of our connection. It is hard to lose such a deep connection and bond in your life, and what it comes down to is it is NOT replaceable.

Ann invited Peter and I over to watch the Super Bowl. I am not a sports person, and have little to no use for football! So much so, that I refuse to watch it and most of the commercials associated with the Super Bowl. There are real world problems, problems that need financial resources, and therefore I think it is absolutely absurd how much money gets squandered on this game. Money from my perspective that could be better utilized. I read a book while they were watching the game, however, there was only one commercial that caught my attention and my heart. It was the ad for Ronald McDonald's House, with its tag line, only Love can put the pieces back! I couldn't agree more, because surviving cancer means much more than surgery, chemotherapy, and radiation. Surviving cancer is a testament to love, support, and family. If you didn't see the commercial, I attached a link to it below.

http://www.huffingtonpost.com/2012/02/05/ronald-mcdonald-house-super-bowl-commercial-2012_n_1256240.html