Saturday, October 17, 2015

Saturday, October 17, 2015

Tonight's picture was taken in October of 2008. Mattie went over to Campbell's house, a good friend of his from kindergarten class. Mattie was home between treatments and had a good day playing, eating Halloween cookies, and just being a child. I wish I could say that Mattie always wanted to play and interact with his friends. He did in the beginning, but after his second limb salvaging surgery, the stress of his treatment, the pain, and his experiences of living in the hospital long-term began to have detrimental effects. The vivacious and engaging Mattie disappeared and he preferred to isolate himself and disengage from those around him. 


Quote of the day: The human person cannot face up to a bad outcome, that's just the deal. ~ Barbara Kingsolver

While Peter is away, my friend Heidi contacted me and asked if I wanted to meet today for lunch and shopping! It was a frigid day and blustery! The sun was out earlier in the morning but by mid-day it was grey and overcast. We had a lovely lunch by the Potomac River in Alexandria and then walked around together browsing and shopping. It was a nice way to spend the day, because being alone after Mattie died is challenging. Especially on a weekend. I can't explain why this is, but it is! Weekends in general are difficult for Peter and me, because without Mattie in our lives we are a bit directionless. Ironically we weren't like this before Mattie was born, but once Mattie entered our world and we raised him for seven years, we got used to being a family of three. 

Peter and his parents drove to Bates College in Maine today to see Nat, our nephew, play in a variety soccer game. Peter kept me posted with photos, and I can only IMAGINE how cold it was sitting outside watching that game! 

Friday, October 16, 2015

Friday, October 16, 2015

Tonight's picture was taken around Halloween of 2008. Mattie's last Halloween with us. We weren't sure Mattie would be able to trick or treat because two weeks before he had his first limb salvaging surgery. In fact, Mattie right arm was still bandaged during Halloween. This made Mattie very self conscious and he knew this really made him different from others. The HEM/ONC clinic invited Mattie to the hospital to pick out a costume of his choosing. The beauty of this was Mattie's art therapists allowed Mattie to select a costume the day before everyone else. They knew Mattie did not like crowds and was also very guarded by his wrapped arm. Mattie was the one who picked out this costume. It just spoke to him and what he loved about it, was you couldn't really tell his arm was not usable. This photo was taken on the hospital elevator, as Mattie was walking around the hospital trick or treating in many of the administrator offices! 


Quote of the day: Every human walks around with a certain kind of sadness. They may not wear it on their sleeves, but it's there if you look deep. ~ Taraji P. Henson

Today was one of those red letter days. I am back to not feeling well with kidney stones. The problem with small stones is there is really nothing you can do but wait for them to pass. Yet it is the waiting that can drive you absolutely batty. I should be used to this by now, since I have been dealing with them since September of last year. I can feel fine for one month or so, and then forget it.

However, I also learned today that one of my friends (her daughter was in Mattie's preschool classes) who has been struggling with cancer is losing her battle. This is just devastating news for her husband and daughter. When you find out that a loved one's cancer has become terminal, it really takes your breath away. Yet as a caregiver you can't fall apart because you serve a vital role. Throughout a cancer journey HOPE changes. In the beginning hope is about curative intent.... that you want the medicine and surgeries to do their job and eradicate the disease. However, over time if one doesn't respond to treatment the notion of end of life care is presented. Certainly the original hope disappears, but hope at that point gets transformed to finding a way to relieve pain and to provide comfort care. As a caregiver and a patient, one must always have hope at every step of the cancer journey, otherwise it becomes truly impossible to manage on a day to day basis. 

Peter is in Boston! He had client meetings there today and when he landed... look what he saw! I told him that this rainbow was a sign from Mattie. 

Our Facebook friend, Tim Beck, created three stunning creations in honor of 30 children who died from cancer. Mattie is featured in his mummy costume. In this piece, Mattie is the third from the right. 

Mattie is on the left!

Mattie is the second from the left, in the bottom row. What is so special about these works of art is that the spirit and essence of our children is memorialized. Our children will always be beautiful and special to us, and though they had cancer, that doesn't completely define them. These photographs help to remind us of this and to remember the happier and more innocent moments of their childhood.

Thursday, October 15, 2015

Thursday, October 15, 2015

Tonight's picture was taken on October 18, 2008. Mattie loved pumpkins.... pumpkins for decorating and also anything pumpkin flavored. In fact until I had Mattie, I despised anything that tasted remotely like pumpkin. But because Mattie loved it so much, and he would want me to share in whatever he was eating, I grew to love pumpkin almost as much as him. 


Quote of the day: Any fool can be happy. It takes a man with real heart to make beauty out of the stuff that makes us weep. ~ Clive Barker


This morning I went to Georgetown University Hospital to meet with one of Mattie's nurses, Debbi. Debbi was Mattie's sedation angel and as Debbi always jokes with me.... Mattie did not like her. It wasn't so much that Mattie did not like her, but when he saw Debbi, he knew that she was coming to sedate him for a procedure or scan. So unfortunately Debbi became symbolic of scans/procedures. Yet of course Mattie knew the alternative, which was having to undergo these scary and long procedures without sedation. We weren't going to allow that to happen! Since we learned from our first experiences in the hospital, that doing scans without sedation was a mistake for Mattie. Without sedation, Mattie was so frightened that he would land up crying and hysterically hiding underneath the scan machine. Ultimately unable to get the scan! The only thing that did result from his oncologist's decision not to use sedation was the start of anxiety. 


While walking on Georgetown's campus, I passed Mattie's memorial stone. Mattie's stone is located in front of the entrance to the main building of the hospital. In front of the building is a lovely open air plaza, and Mattie's stone is located right by the yellow pansies. 

A close up of Mattie's stone. 

At this time of year I see pumpkins and people getting ready for Halloween and I of course wonder what would Mattie think of Halloween now that he would be 13? I have no answers, because to me Mattie will always be 7. Mattie used to love picking pumpkins from the pumpkin patch, going to fall festivals, and decorating our home with all his pumpkin finds. Since Mattie's death, we have never bought a pumpkin or decorated for Christmas. In a way, with Mattie's death our lives just stopped. We live, but we live very differently from most people. A conversation most people do not want to know or hear about. Yet it is our reality. Something put me in a funk this week, and this is where I remain. 

Wednesday, October 14, 2015

Wednesday, October 14, 2015

Tonight's picture was taken on October 7, 2008. I typically did not snap photographs of Mattie upset or in a bad mood. I am not sure why I made that decision! Now that I look back at this, I really should have. But at the time when I was writing the blog, we were fighting for Mattie's life and communicating to hundreds of people every day. The content of what I was writing was hard enough to read, so I suppose subconsciously I did not want that translated into photos. I am not sure if that was to protect others, or to protect Mattie. But Mattie suffered a lot of unhappiness. This photo captured it well. Several of my students put together this huge Halloween basket for Mattie, in hopes that this would bring him some fun and to let him know they were thinking about him. However, what happened was Mattie understood from this that he was different. That he lived in a hospital and didn't get to do what other children were able to do.... such as celebrate Halloween or go to school. All these changes made Mattie very depressed. 



Quote of the day: Alone we can do so little; together we can do so much. ~ Helen Keller


Yesterday evening, the Association of Pediatric Hematology/Oncology Nurses (APHON) sent out a press release about their official endorsement of our National Psychosocial Standards of Care for Children with Cancer and Their Families. Mattie Miracle has been working with APHON on this press release, and we were thrilled to see it all over the Internet yesterday and today. We are grateful for APHON's support and for their acknowledgment of this vital work. As a Foundation, we are working on getting as many professional endorsements of the Standards, for credibility purposes. Having major organizations endorse the Standards, will only help with the adoption and implementation phase of this project. 

But like Helen Keller's quote pointed out, when a group of people come together... so much can be accomplished. Peter and I may have had the vision to create National Standards of Care, but without the expertise, skills, and steadfast work of our core psychosocial research team and a total of 66 health care professionals from the US, Canada, and the Netherlands these evidence based standards would never have been generated. We are grateful to these committed professionals and for APHON for being our first professional endorser! 


Association of Pediatric Hematology/Oncology Nurses Endorses Psychosocial Standards of Care for Children with Cancer and Their Families:

http://www.newswise.com/articles/association-of-pediatric-hematology-oncology-nurses-endorses-psychosocial-standards-of-care-for-children-with-cancer-and-their-families

Tuesday, October 13, 2015

Tuesday, October 13, 2015 -- Mattie died 317 weeks ago today. 

This photo of Mattie on a golf ball was sent to us by a fellow parent who was hosting a golf tournament and featured Mattie and other children on the green. They posted this photo on Peter's Facebook page and naturally I quickly downloaded it! I know that parents who have lost their child to cancer refer to their child as either a cancer angel or warrior. I am not sure why neither of these terms resonate with me, and I never refer to Mattie in that manner. Not that I don't think he was either (angel and warrior), it is just that this is not how I depict him in my mind or heart. 






Quote of the day: Blessed are they that see beautiful things in humble places where other people see nothing. ~ Pissaro

My friend in cancer, sent me this photo today and it resonated with me. Not just the fact that it depicts a butterfly, which I associate with Mattie, but because of Pissaro's quote. After I lost Mattie, the simple and the natural are what truly captures my attention. 

For the past week, while sitting at my desk, a monarch butterfly flutters by. Almost at the same time each afternoon. If I lived in the suburbs or in a rural area, one would probably think nothing of this. But since I live in the heart of the city, I take notice! Also the fact that it is a daily occurrence. 






Peter took the photos below of Marina City in Chicago. I asked him to take a photo of them because I know that when my paternal uncle lived in Chicago, he lived in these towers. He even sent me a poster of these towers years ago and put an X on the poster indicating his floor. I have never seen Marina City in person, so I figured a photo would be the next best thing. 

The Marina City complex was designed in 1959 by architect Bertrand Goldberg and completed in 1964 at a cost of $36 million, financed to a large extent by the union of building janitors and elevator operators, who sought to reverse the pattern of white flight from the city's downtown area. When finished, the two towers were both the tallest residential buildings and the tallest reinforced concrete structures in the world. The complex was built as a city within a city, featuring numerous on-site facilities including a theatre, gym, swimming pool, ice rink, bowling alley, several stores and restaurants, and, of course, a marina. 

Marina City was the first urban post-war high-rise residential complex in the United States and is widely credited with beginning the residential renaissance of American inner cities. Its model of mixed residential and office uses and high-rise towers with a base of parking has become a primary model for urban development in the United States and throughout the world, and has been widely copied throughout many cities internationally. Marina City construction employed the first tower crane used in the United States.






Any one who thinks that a nurse just handles a patient's medical concerns, hasn't really interacted with a nurse. These professionals are the first responders to psychosocial issues for patients and their families. Those who walked along with us during Mattie's cancer battle know of Brandon, Mattie's best buddy (and a cancer survivor). Brandon's niece was treated by Nurse Pam (featured in this article), and based on my own experience with Mattie's nurses, this story hits home to me. Our nurses not only cared for Mattie, but they became part of our family.

Nurse adopts a little boy after he recovers from birth defect:

http://www.littlethings.com/nurse-pam-adopts-yuri/

Monday, October 12, 2015

Monday, October 12, 2015

Tonight's picture was taken on October 15, 2008. Mattie was in the child life playroom with his best buddy, Brandon. Mattie and Brandon were diagnosed with cancer around the same time and they gravitated to each other. As did I with Brandon's mom, Toni. Toni and I did not sugar coat things and we saw our situation from a similar vantage point. Mattie did not like playing or interacting with children his own age in the hospital. In fact, he let very few people in, and those who he did let in were older than he was. Yet it worked and Brandon and his family are still a part of our lives today. In fact Brandon's niece was born on April 4th, the same day (not year) as Mattie. 


Quote of the day: Be sure that whatever you are is you. ~ Theodore Roethke

Peter is attending a conference in Chicago for the next two days. So he sent me some photos! The beautiful Chicago River!

Peter room with a view! 

















I like tonight's quote because it relates to the article I received today and posted below. The greatest myth we have about childhood cancer is that once the treatment has ended, things go back to NORMAL. This couldn't be further from the truth. Over two thirds of childhood cancer survivors have late effects from the medical treatment. Late effects aren't minor issues either. Late effects can be secondary cancers, high blood pressure, diabetes, sterility, lung problems, hearing loss, issues with sight, bone growth and development problems and of course long term psychological issues. The psychological, social and emotional issues are always down played, but they are quite significant and just as deadly as the medical problems (e.g., depression, anxiety, PTSD, drug addiction, and eating disorders).

This article illustrates that surviving childhood cancer is a psychosocial problem of great magnitude. As this young adult writes about her own identity, she is troubled by the fact that she continues to be defined by her cancer. Even though she isn't in active treatment! She has great anxiety about even writing about her feelings, since she knows many children do not survive and she should be lucky to be a survivor. However, she wonders what her real identity is? Can she have an identity without cancer? Will she ever be able to let go of the worry that her follow up appointments and scans will reveal a cancer relapse? All great questions and she is clearly saying..... ENOUGH IS ENOUGH! Survivors want to be NORMAL, but unfortunately they struggle with the reality that this isn't really possible. Childhood cancer is a life sentence in a way that takes great determination, courage, and strength to manage without spiraling downhill and living in constant fear, worry, or guilt. I found this young woman's perspective very enlightening and when this was posted on Facebook today, many other mom's of teenagers and young adults concurred with the sentiments expressed. They felt that the article could have easily been written by their own child, since they often hear... "I'm tired of cancer and ready to be me." 

Breaking Free from a Cancer Diagnosis:

http://www.huffingtonpost.com/elise-frame/breaking-free-from-the-cancer-identity_b_8168724.html

Sunday, October 11, 2015

Sunday, October 11, 2015

Tonight's picture was taken in June of 2003. Mattie was 13 months old and in one of his favorite forms of transport..... in a back carrier, sitting high above the ground with a bird's eye view. That weekend we took Mattie to Great Falls, on the Maryland side. As you can see, Mattie was smiling and enjoying the adventure. 


Quote of the day: Those who contemplate the beauty of the Earth find reserves of strength that will endure as long as life lasts. ~  Rachel Carson

We had a slow start to the day. On weekends it isn't unusual for us to get into a funk. It would have been just as easy to remain in that funk and not to have left our home. However, we decided to go for a walk instead! Not just any walk, we wanted to go on a trail we had never been on before. Peter found several trails along Great Falls, on the Virginia side for us to explore. We did much more than we set out to do.... because we did not actually walk but we went on a hike. A 5.5 mile one, up and down inclines, that made for a much more vigorous journey than we expected. But we did it and got to see some incredible views of the Potomac River.  

Along our hike today, we saw all sorts of things. People of all ages and plenty of dogs! However, managing across the path was also a Woolly Bear Caterpillar. Mattie loved these caterpillars, and naturally as soon as I saw it, I thought of Mattie. A boy who was fascinated by bugs. 

One of the trails we went on was called the Difficult Run Trail. This water body is "Difficult Run" and the pathway along this stream was absolutely beautiful and serene. 

We also came along a Katydid. These bugs absolutely fascinate me since they look SO much like a green leaf. I would have completely missed it, if I hadn't seen it jump out of the corner of my eye. 

I am hoping this photo gives you a feeling for the trails. Most of them weren't flat and easy to walk. Instead they have tree roots everywhere and inclines and declines! It was a real work out on these trails.  

Then of course along the trails were rocks! Rocks that you had to climb through along the pathway. 

But once we did all that climbing we got to several lookouts with amazing vistas. This being one of them. We were standing in Virginia, but across the way in the background was Maryland. 

The beauty of the Potomac River!

A close up of the Potomac River. You can even see a person kayaking in the water. 

Peter snapped this photo of me. We were in Virginia and the people on the rocks across the way (in the background) were in Maryland (the Maryland side of Great Falls).