Saturday, February 6, 2016

Saturday, February 6, 2016

Tonight's video was taken on February 18, 2009. It was clearly the night time, as you can hear our sound machine (sounds like rain) running in the background. We used a sound machine to drown out the beeping of machines and the chaos in the hallways of the PICU. However, I captured Mattie on video because when he did not want to be touched or have his broviac catheter accessed. When Mattie felt this way, he would try to curl up in a ball. Which wasn't easy for him given his extensive limb salvaging surgeries. In the video you can hear me talking, but I honestly can't recall who was in the background talking with me. It had to be one of Mattie's nurses, but I can't place her voice. 


Quote of the day: Death laughs, no one else does. ~ Amy Neftzger

Peter and I spent most of the day at home. However, by late afternoon we walked and even went out to dinner. On our walk home, we passed the White House. I couldn't get over what I was seeing because the fountain (closest to the gate) looked like it was colored GOLD. Since the childhood cancer community couldn't get the President to light the White House gold during childhood cancer awareness month, this has become a hot topic and sensitive issue for those of us touched by childhood cancer. So I chuckled to Peter and said.... this must be an accident, because the fountain looks like it is lit in Gold lights. 

I received this comment today on the blog from one of Peter's clients in Oklahoma. Melody said, "While Peter was in Oklahoma, he showed us his new office space. While I love the idea of just being able to talk to the person next to you without having to move an inch, I hated the no personal items policy. Glad he put the kabash on it! Love the windowsill! Fat chance there isn't a picture of Mattie on his desk :) Been following the blog for years! Glad I found the comment box."


I was thrilled to receive Melody's comment tonight. For many reasons. The first of which is Peter loves traveling to Oklahoma. When Peter travels there, the first thing I hear about is how nice people are on the plane. Which to me is unheard of traveling coast to coast. Peter tells me that people have chats and conversations with each other and I honestly laugh because on each coast of the United States, I think we are trained NOT to engage with those around us. I am not saying it is healthy, but it seems to be our reality. Yet I love connecting with people, so I have a feeling Oklahoma would be right up my alley. 

Peter always has a wonderful visit with his colleagues in Oklahoma and this particular visit that he just came home from this week sounded very special. The group went out to sing Karaoke together, and it just sounded like a wonderful way to further relationships and get to know one another better. Clearly not all business travel is pleasant, so when Peter comes back energized this captures my attention.

Of course what captured my attention is that Peter told me that several of his Oklahoma friends read the blog. I am very touched and honored to hear this and again it tells you about the importance of personal connections in Oklahoma. I think I am living in the wrong state! I appreciate Melody's comment because when I heard about Peter's office having a NO personalization policy of one's desk space, I laughed. I laughed because when you spend, in Peter's case 12 hours a day, in a space it is important that you can make your space comfortable and identify it as your own. After all not having an office with four walls and a door is a major adjustment, but asking one to work in a sterile, white washed, no character environment is unreasonable. Naturally decorating with some taste and discretion is important. But it was nice to hear Melody's perspective and to know our feelings weren't unusual.... and she is right.... there is definitely a photo of Mattie (well a few!) on Peter's desk.  

Melody, if you are reading this.... you and your colleagues have made my day! Thank you for reading the blog and following our grief journey with me. Hopefully one day I will meet you in person. 

Friday, February 5, 2016

Friday, February 5, 2016

Tonight's picture was taken on February 5, 2009, seven years ago today. Which is hard to imagine in and of itself. Mattie was pictured with Sally, the story book lady. Sally is immensely talented and one of the only visitors Mattie NEVER turned away. Sally made stories come alive and allowed the children to actively take part in each tale. Whether that was playing a part, making noises and sound effects, or you name it. Sally had a way of totally getting to know each child, so every time she visited she knew instinctively what motivated and intrigued each child. 


Quote of the day: The loss of a loved one is like that of a limb; time may heal the anguish of the wound, but the loss cannot be repaired. ~ Robert Southey


I went out to lunch today with a friend who I have gotten to know quite well this year. We got connected through mutual friends on Facebook. In any case, over lunch my friend asked me who do I talk to about Mattie? This wasn't a clinical question, it was more of a simple and honest question about who hears my tales about Mattie when he was well and of course also listens about the pain and anguish associated with Mattie's cancer battle and death? She asked excellent questions, but my answer truly isn't simple. 

It isn't simple because I would say the loss of a child is not a topic anyone really wants to hear about for a long period of time. I noticed it scared many people away in the first year after Mattie died, and then of course if you survive the first year, most people think that life moves on and things get better over time. However, that of course isn't the case as anyone who has suffered a traumatic loss knows. The loss walks with you always, but you learn to live with this feeling. 

When I got home today, I found Mr. Falcon perched on our bird feeders. He maybe beautiful, but he scares away all our birds. He is just a mean looking thing, don't you think?! 

He is awaiting his next prey! The piercing eyes, the talons, and that beak are all very intimidating to me!

Thursday, February 4, 2016

Thursday, February 4, 2016

Tonight's picture was taken on February 18, 2009. This was classic Mattie! Mattie was in his PICU room building something out of Popsicle sticks and at the same time was eating a cupcake. Mattie was the ultimate multi-tasker. Some people who do more than one thing at a time, don't do either task well. Mattie however, could concentrate on multiple things at one time and the products of each were excellent. 


Quote of the day: As I walk through the redwood trees, my sneakers sopping up days of rain, I wonder why bereaved people even bother with mourning clothes, when grief itself provides such an unmistakable wardrobe. ~ Jandy Nelson

Today is World Cancer Day. Typically when cancer is discussed we think about adults. But we can't forget about our children. Cancer is the #1 killer of children by disease, and every three minutes a child around the world is diagnosed with cancer.

Over the past 20 years only three new drugs have been approved for use in children, while most children are treated with drugs from the 1950's and 1960's. Cancer is much more than a physical disease. We can't forget that 59% of children treated develop a mental health issue and PTSD is well documented in parents whose children have completed treatment.

MORE FACTS:

1. Every day 46 children are diagnosed with cancer (American Childhood Cancer Organization, 2014).
2. Each day, 7 children die from cancer (Surveillance Epidemiology and End Results Cancer Statistics Review/ National Cancer Institute, 2012).
3. As a result of treatment, 59% of children have a diagnosable mental health issue (DeMaso & Shaw, 2010).
4. Childhood cancer threatens every aspect of the family's life and the possibility of a future, which is why optimal cancer treatment must include psychosocial care (Institute of Medicine, 2008 - Cancer Care for the Whole Patient).
5. The provision of psychosocial care has been shown to yield better management of common disease-related symptoms and adverse effects of treatment such as pain and fatigue (Jacobsen et al., 2012).
6. For children and families, treating the pain, symptoms, and stress of cancer enhances quality of life and is as important as treating the disease (Institute of Medicine 2015 - Comprehensive Care for Children with Cancer and Their Families).
7. Childhood cancer survivors reported higher rates of pain, fatigue and sleep difficulties compared with siblings and peers, all of which are associated with poorer quality of life (Children's Oncology Group Long Term Follow-Up Guidelines, 2013).
8. Changes in routines disrupt day-to-day functioning of siblings (Alderfer et al., 2010). Siblings of children with cancer are at risk for emotional and behavioral difficulties, such as anxiety, depression, and PTSD (Alderfer et al., 2003). 
9. Symptoms of post traumatic stress disorder are well documented for parents whose children have completed cancer treatment (Kazak et al., 2004).
10. Chronic grief has been associated with many psychological (e.g., depression and anxiety) and somatic symptoms (e.g., loss of appetite, sleep disturbances, fatigue), including increased mortality risk (Alam et al., 2012).

Today I hosted a birthday luncheon for my friend, Ann. I selected a restaurant overlooking the Potomac River, which was the perfect choice since it was grey and cloudy today. Yet being in this bright, open and picturesque restaurant seemed to help how we all felt. 

The table was garnished with all sorts of flowers which also made it feel like it was spring in February! Around the table with me were many of our mutual friends from Mattie's preschool. It is an interesting dynamic for me to be surrounded by women, in which our commonality is our children. That is how we met, however, I am the only one in the group whose child is no longer living. It is natural that these women would talk about their children, their happenings in their lives, and the issues associated with raising teenagers. Nothing of which I can relate to anymore. Which to put it bluntly is hard. But as a bereaved parent, I could either curl up in a corner and ignore the world (which I do on occasion) or try to function in the every day world. 

For years I knew Ann's favorite dessert is a white chocolate raspberry cheesecake from the Cheesecake Factory. So I asked this restaurant whether I could bring a cake in from the outside. They accommodated my request. 

Our waiter, Anthony, was lovely! He took this photo of us. From left to right (standing) are:
Mary, Catherine, Tina, Jane, Dawnee, and me. Of course Ann is our seated guest of honor.  

Wednesday, February 3, 2016

Wednesday, February 3, 2016

Tonight's picture was taken on February 6, 2009. Mattie was in the child life playroom of the hospital and working on building a volcano. Back when I first started writing the blog, I tried to show only the most flattering photos of Mattie. Photos that may not have shown the reality of what we all were dealing with. I did this because it was hard enough for our support community to accept that Mattie had cancer, but seeing what we experienced on a daily basis most likely would have scared people and even turned them away from reading the blog. The reality was Mattie's limb salvaging surgeries left him quite disabled and traumatized. After surgery and healing, Mattie would never have been able to lift his arms up over his head. His range of motion was severely limited and this frustrated him greatly. As you can see here, the only way Mattie could lift his hand was he had to practically lift his body. Yet when Mattie was involved in activities, he could get absorbed in them and for just a little while he was a child again. 



Quote of the day: Grief is in two parts. The first is loss. The second is the remaking of life. ~ Anne Roiphe


Today I went to see my dentist. While talking to the hygienist, I updated her on all my physical issues since she saw me six months ago. She has known me for quite some time and as I was reporting to her about all the problems I am dealing with, we both had to laugh. We laughed because it just doesn't seem possible that while trying to address one medical issue, the treatment produces many others. 

What came to my mind while talking to her was "This is the house that Jack built." This is a British classic, and a nursery rhythm we read to Mattie often. I included it down below because even to this day it makes me laugh. Basically Jack builds a house, and in the house he has malt (barley). However, there is a rat that eats his malt, so a cat is added to the mix to solve that problem. But it doesn't end there, because the dog bothers the cat. So it is a cumulative tale that makes you chuckle. Yet the analogy of Jack is perfect to my medical conditions.


This is the house that Jack built.

This is the malt that lay in the house that Jack built.

This is the rat that ate the malt

That lay in the house that Jack built.

This is the cat that killed the rat

That ate the malt that lay in the house that Jack built.

This is the dog that worried the cat

That killed the rat that ate the malt

That lay in the house that Jack built.

This is the cow with the crumpled horn

That tossed the dog that worried the cat

That killed the rat that ate the malt

That lay in the house that Jack built.

So what am I talking about? Well I suffer from chronic migraines. I do not know what a headache free day looks like and I haven't for 14 years. I have tried all sorts of medications to address this issue and the medication that I have been taking for the past two years to try to prevent extreme pain caused me to develop kidney stones. Stones that I got every three months. So I had to stop that medication because I couldn't manage the headaches and the kidney stones. However, it should be noted that such side effects only happen in a small percentage of people. In the Fall I had surgery to remove a mass in my breast. The surgery went well but from it I developed costochondritis, which is inflammatory of the ribs. It is very painful and takes months to heal. I was given an anti-inflammatory medication to help speed up the healing process and alleviate pain so I could function on a daily basis. Well don't you know that I would be in the 3% of people who develop periphery neuropathy (numbness) as a side effect of this medication. So now I have the headaches, costochondritis and neuropathy in my legs and arm. If it wasn't happening to me, it would actually be hysterical! Needless to say, I opting for a medication free existence in order to have some sort of quality of life back. 

Tuesday, February 2, 2016

Tuesday, February 2, 2016 -- Mattie died 333 weeks ago today.

Tonight's picture was taken in February of 2009. I mentioned Mattie's footprint on the blog a few days ago. This footprint was taken by his art therapists in clinic. They added it to a welcome sign in the pediatric unit of the hospital. A friend of Facebook sent me this photo today. It is not a photo I have because I was standing on Mattie's left side and this mom was standing behind Mattie. Frankly I did not remember that this mom was even in clinic with me that day! This welcome sign has Mattie's footprint on the right hand side, and on the left hand side is a hand print. But the hand print belongs to Morgan, who at the time was a baby undergoing treatment for leukemia. 


Quote of the day: Death is never easy when you know the people doing the dying. ~ Oliver North

In May 2015, Vice President Biden's son, Beau, died at the age of 46 to brain cancer. Since that tragic loss, VP Biden is committed to finding better treatments and an end to this complex disease. Naturally as a parent advocate, I know MANY parents who have lost children to cancer. However, not having VP Biden's political position we do not have access to the resources to make our requests a reality. 

Yesterday there was an hour long twitter session in which advocates and others could have a dialogue with Dr. Francis Collins (the NIH director) about this Cancer Moonshot initiative. 

This photo was circulating all over the internet. While the cancer community is thankful to VP Biden for his personal commitment to a cancer "moonshot," this moonshot MUST include childhood cancer.

Of course we at Mattie Miracle take it one step further that in addition to funding and supporting biomedical research, this initiative must also support psychosocial research to care for children and families throughout the cancer trajectory.

Research highlights the importance of psychosocial care for managing pain, adherence to treatment, and overall quality of life. It is time to step up and truly address comprehensive cancer care which means addressing the WHOLE patient and their FAMILY MEMBERS.

Yet when you look at the White House fact sheet (https://www.whitehouse.gov/the-press-office/2016/02/01/fact-sheet-investing-national-cancer-moonshot) for the Cancer Moonshot initiative, look at what is glaringly missing..... Psychosocial Research and Care. 

The idea that a concerted government push can lead to a “cure” for cancer is nearly a half century old, stretching back to President Nixon’s failed “War on Cancer.” The chances of reaching a moment of victory as the analogy “moonshot” suggests seem entirely unrealistic.

“This is not about getting to one point in a certain period of time,” said Dr. Harold Varmus, a Nobel laureate and former director of the National Cancer Institute. Unlike in 1971, when President Nixon launched his cancer war, researchers now understand that cancer is not one disease but essentially hundreds. The very notion of a single cure — or as Mr. Obama put it, making “America the country that cures cancer once and for all” — is misleading and outdated (NYT article:

http://www.nytimes.com/2016/01/14/health/moonshot-to-cure-cancer-to-be-led-by-biden-relies-on-outmoded-view-of-disease.html?action=click&contentCollection=Politics&module=RelatedCoverage&region=Marginalia&pgtype=article).


$1 Billion Planned for Cancer Moonshot:

http://www.nytimes.com/2016/02/02/us/politics/dollar1-billion-planned-for-cancer-moonshot.html?_r=2

Monday, February 1, 2016

Monday, February 1, 2016

Tonight's picture was taken on February 4, 2016. This was a typical physical therapy scene with Mattie. Just like him, it wasn't boring. In order to inspire Mattie to participate in physical therapy, it took a team of us to motivate him. Walking even a couple of steps was exhausting and painful. After all, Mattie wasn't just rehabilitating, he was recovering from limb salvaging surgery (in which three limbs were replaced with prosthetics) and Mattie was still undergoing chemotherapy. As you can see, Mattie had Anna (his physical therapist) pushing his IV pole, and behind him were Jessie (one of Mattie's art therapists) and Linda (Mattie's child life specialist). Notice all the colorful plastic cones attached by a string to Mattie's walker. All designed by Mattie!


Quote of the day: Closed eyes, heart not beating, but a living love. ~ Avis Corea

Today was a warmer day, but grey, rainy, and rather depressing. The highlight of my day was meeting my friend Dawnee for lunch. We were celebrating her birthday, which occurred last week during the blizzard.

Dawnee is another friend I made thanks to Mattie. In 2004, we submitted a preschool application to the Resurrection Children's Center. Dawnee was the assistant director of the school at the time and that was the first time we met one another. Then life got busy and complicated with Mattie's illness and we lost track of one another. Fast forward to 2013, I was planning a birthday party for another friend and I invited Dawnee to the party. That birthday lunch reconnected us.

Dawnee introduced me to this restaurant in Falls Church, VA and Peter actually took me to it for my birthday last year. I enjoyed it so much that I decided this would be the perfect spot for today. No matter what the weather is outside, this restaurant has floor to ceiling windows which seem to make even a grey day brighter!   

Sunday, January 31, 2016

Sunday, January 31, 2016

Tonight I am posting two photos because of the nature of what I am writing about below. I figured seeing the actual photos before they were transformed would be helpful! 

The photo of Mattie and me was taken on February 14, 2009. The last Valentine's Day we celebrated together. Mattie was in the hospital and worked with his art therapists to surprise me with all sorts of gifts. I was banned from the child life playroom for quite some time and then called back in when Mattie was finished. Mattie gave me this hand cut heart paper crown and a box filled with valentine's. I naturally saved all these items. Mattie's art therapist captured this moment in time. 

This photo of Mattie and Peter was taken around Peter's birthday in November 2008. The last birthday Peter celebrated with Mattie. Mattie was scheduled to have his second limb salvaging surgery the day before Peter's birthday, so we decided to celebrate Peter's birthday early. Mattie was adamant that he wanted to create something for Peter and when we asked him what... he said a birthday cake. But one out of model magic. So he designed it and colored it. When he gave it to Peter, I snapped a photo of them together. It is one of my favorites of them together. This cake sits on the bureau in our bedroom. 




Quote of the day: Sometimes, when one person is absent, the whole world seems depopulated. ~ Allphonse de Lamartine

Our facebook friend, Timothy Beck created several creations for us today! The photo you saw of Mattie and Peter above was transposed onto this cherry. 

This was Mattie and I on Valentine's Day. What I love about this photo is the close up of us. It shows what Mattie did with me always which was to touch noses and stare into my eyes! Though the photo above is of the same subject matter, this close up to me captures the emotions of the moment. 

Tim and I had been writing back and forth on Facebook today and I suggested Valentine's Day themed creations. He sent me several heart templates to choose from, and this was one of the one's I selected. I like this template because of the wood. Mattie loved trees and I remember on almost every walk we took with him, he brought home a branch. 

I just love this whole composition and told Tim that..... These are OUR colors... red and orange and it seems like the perfect symbol of my life now without Mattie. I hold the memories we had together tightly in my hands. 

Tim viewed this creation that he did as a reject because of the open heart cutting off part of me. However, despite the fact that I am cut off, I like what this creation symbolizes.... a parent with an incomplete or hollow heart.