Saturday, February 23, 2019

Saturday, February 23, 2019

Tonight's picture was taken in May of 2007. Mattie was five years old and was helping me celebrate Mother's Day. We had breakfast together outside on our deck and apparently Mattie decided to hug and kiss me. Though Mattie and I were close, I wouldn't say he was a kid who gave out a lot of hugs and kisses. So when he did, it was special. 


Quote of the day: Rainy days should be spent at home with a cup of tea and a good book. ~ Bill Watterson

Though I agree with Watterson's quote, the problem is in DC we get so much rain, that we all would be home at this rate and would never leave. It maybe good for the tea and book companies, but as a daily way of life this constant rain is depressing. 

Yet when you have a dog, there are no breaks for the weather. Rain, sleet, snow, and blistering heat.... you and out and in it! Sunny makes sure of it. 

Today we ventured to Roosevelt Island. I knew it would be the perfect day to go there, because it was cold and wet. We practically had the Island to ourselves. It was super peaceful and Sunny had a ball. 

Everything on the Island is brown and flooded. But the ducks were all around us and Sunny literally wanted to jump off the boardwalk to chase a duck!

My duck friends! The rest of the day I spent working on Foundation items, as we are headed to a conference in Atlanta next week. So there is plenty to do toward that and of course I am inundated with Walk & Family Festival (May 19th) plans. 

Friday, February 22, 2019

Friday, February 22, 2019

Tonight's picture was taken in March of 2008. Mattie came home from school that day and wanted to fly a kite. Not necessarily kite season, but that did not stop him. Our commons area was the perfect place to learn to fly a kite, because  there is always a breeze throughout the seasons. 




Quote of the day: As to diseases, make a habit of two things — to help, or at least, to do no harm. ~ Hippocrates


The father of medicine's quote tonight is very telling.... to do no harm. Yet I would say that medicine in some cases is doing more harm than good, particularly when it comes to meeting the holistic needs of patients and their families. We maybe living in the 21st century, but the attention to psychosocial care from physicians is minimal at best. If it exists at all. So many reasons can explain the why these human qualities are lacking in our doctors. 

First I think the human factor gets trained out of doctors in school. Being humanistic is not rewarded and in some cases I even saw it chastised within the hospital setting. Which confuses me, because how a doctor thinks he/she will get anywhere with a child patient without displaying human qualities is simply beyond me. I also blame insurance companies for regulating the art of care, and any one who has ever had to see a doctor knows that you have very limited face to face time. For doctors' offices there is no incentive to providing quality care, when insurance companies demand quantity of patients seen.  

It isn't surprising given the nature of some medical treatments, that patients may develop medical traumatic stress. In fact, after Mattie's second limb salvaging surgery, I noticed something wasn't right with him. He was only three months into treatment, but behaved like someone who just gotten back from a war. The PTSD symptoms were very similar. As Mattie was highly agitated, startled at noises, did not want to be touched, had bad nightmares and couldn't sleep and the list went on. Of course when I brought these issues up to his medical team, they told me it was most likely a reaction to pain medication. I DON'T THINK SO, and fortunately I kept advocating and demanding to see a psychiatrist. No one ever used the terminology medical traumatic stress with me, instead I had to learn it by doing my own research. While also caring for Mattie 24/7.

Yet what about parents? What happens to us after witnessing such medical traumas with our children? After all with Mattie there were daily traumas, not just the trauma of diagnosis. Well thanks to people like Anne Kazak and other researchers in the field of psycho-oncology, it is now well understood that parents of children with cancer develop medical traumatic stress. Unfortunately I am living proof that the experience I had with Mattie has permanently impacted me. I have been transformed into a much more anxious individual. 

After Mattie died, I began doing research on childhood cancer and trauma. I kept seeing journal articles pop up on my screen and many of them were written by Dr. Anne Kazak. So in the fall of 2010, a year after Mattie died, I wrote Anne an email. Never thinking she would respond. But she did! Needless to say, something I must have said caught her attention and we kept dialoguing for about two years. Until Peter and I asked her to serve as the scientific chair of the first ever childhood cancer psychosocial symposium on Capitol Hill. Anne agreed and we have been connected ever since. In fact, Anne is part of our core team who created the evidence based psychosocial standards of care. 

My friend Debbie, sent me the article link below. Within the article Anne is mentioned as is medical traumatic stress. Just so we are all on the same page,  
medically traumatic stress is a growing area of research in the field of post-traumatic stress disorder, or PTSD. For parents, a child’s single medical event or an ongoing medical condition—such as cancer, severe injuries, Type 1 diabetes, epilepsy, or other neurological disorders—can cause post-traumatic stress. Symptoms may include reliving the experience, avoiding reminders of the event or condition, feeling numb or detached from others, anxiety, difficulty

concentrating and being constantly on the lookout for danger.

Check out the article for yourself. But honestly if it weren't for Anne's research, I would have thought something was very wrong with me. However, after significant reading, I know that how I feel, think, and respond to certain situations can all be linked to the 14 months of watching Mattie endure cancer treatment and then die a horrific death in front of us. It is NO WONDER why I need valium yesterday to manage through a medical procedure. I know it, other parents who have experienced traumas with their children know it, so why can't our medical system seem to understand that patients come to them with previous medical traumas?????????????? 


For Parents of Ill Children, a Growing Recognition of PTSD:

https://www.wsj.com/articles/for-parents-of-ill-children-a-growing-recognition-of-ptsd-11550577600?shareToken=st605b167335f0498f89295136ab4a351b&ref=article_email_share

Thursday, February 21, 2019

Thursday, February 21, 2019

Tonight's picture was taken in March of 2009. I know exactly what was happening here..... Mattie was getting an infusion of Doxorubicin. How do I know? I can see the horrible red IV bag hanging on Mattie's machine. Each of Mattie's chemos had a different color. Mattie may have looked like he was very comfortable during the infusion. Which he may have been, but that comfortable feeling never lasted long. We helped him manage nausea, mouth and throat sores, inability to eat, constant runs to the bathroom (since he was given IVs to flush his system) and a host of mood issues (agitation, anxiety, depression, and inability to sleep). I have forgotten NONE of this!


Quote of the day: There's nothing as exciting as a comeback ' seeing someone with dreams, watching them fail, and then getting a second chance. ~ Rachel Griffiths

Today, I had a cystoscopy, performed in my urologist's office. Two weeks ago, she found blood in my urine, and wanted to find an explanation for this. At first when she told me I would need to do a CT scan and a cystoscopy, I really questioned why! But then I stopped to think about this and understood that bladder cancer needed to be ruled out. 


Before the procedure took place, I asked my doctor for a low dosage of valium. The beauty of valium is it works quickly, but it also doesn't have a long lasting effect. I was fully aware of everything going on, but it definitely helped with my medical anxiety, so that the procedure could actually go more effectively and I experienced less pain than my second cystoscopy. 

I learned the trick of asking for anxiety meds from Mattie's sedation nurse, Debbi. Debbi's philosophy is that it "is better living through chemistry." When I had to have a lesion removed from my breast a few years ago, Debbi was with me and encouraged me to demand valium during the placement of a metal guide wire through the breast. It was a brilliant decision. So now I know exactly what to advocate for. 

Once valium was on board, my doctor's nurse cleaned the external region and applied a local anesthetic inserted into the urethra. Then I waited for ten minutes for it to take effect before the doctor came in and began by inserting
a solution of saline from an IV bag into your bladder via the cystoscope. Apparently, the solution expands the bladder, allowing the doctor to get a more detailed view.

This is the third cystoscopy I have ever had. The first one was done while I was sedated at a hospital. The second one was done by my current urologist at her office maybe in 2011. It was such a horrible experience, I vowed I would never do another one conscious. 

The procedure involves two different scopes, a flexible one like this and a rigid one with a high quality camera.

A small camera attached to the cystoscope relays live video feed to a monitor. As my urologist was performing the procedure she was telling me everything she saw. Indicating along the way that she did not see cancer in each region of the bladder she was viewing. 

So that is the good news... I do not have bladder cancer. Therefore my main issue causing blood in my urine is kidney stones. I honestly was so thrilled by this news I hugged my urologist. She did not know what hit her, because typically I am giving her feedback and a piece of my mind. While I was hugging her, she told her nurse that I lost Mattie to cancer and therefore the threat of cancer is overwhelming. Once the nurse heard this, she got the full picture of why I needed valium and why I acted like I won the lottery with the pronouncement of being cancer free. 

Because I took valium, the office would not let me leave without a family or friend escort. Since Peter has important meetings all week, I asked two friends if one of them could pick me up. It turns out they both came. Literally they were camped out in the office and they brought chocolate! Before I left the procedure room, I texted both of them to let them know the good news, so they wouldn't be worried about me or in what state I would be greeting them. Once I saw my friends they gave me hugs and we literally went out to lunch to celebrate. I wasn't expecting this, but it was wonderful that they understood the magnitude of today!

Wednesday, February 20, 2019

Wednesday, February 20, 2019

Tonight's picture was taken in March of 2009. For the life of me, I can't remember where these train pieces came from, but clearly they were right up Mattie's alley. I am sure someone in our support community brought them to him. From an early age, Mattie loved anything that moved and had wheels. As you can see, our whole living was transformed. All over our floor were lego cityscapes, train tracks, and toys. Given that Mattie could not walk, stand, or move around, it made sense for everything to be on the floor, so he could easily access it.  

Quote of the day: To appreciate the beauty of a snowflake, it is necessary to stand out in the cold. ~ Aristotle

I have to admit that if it weren't for Sunny, I most likely wouldn't be out and about and walking in the snow. He and I went out twice today, once for a 90 minute walk. By the time we were done, I was frozen and he was ready for more.

This was a photo of Sunny looking out at the Potomac River and the Roosevelt Bridge. 

The building in the background is the Kennedy Center. I have to say on my 90 minute walk, I did not see a lot of people. Which I LOVE. Snow days are the only times when you are in the city and don't feel completely congested with cars and people. 

Don't you just love seeing the cherry blossoms in February? There are three trees outside of the Kennedy Center that bloom every February. They give us hope that eventually it will be spring. 

I entitle this.... Selfies with Sunny!

A cute face, no? This fellow is all business on his walks. His business is locating anything that scurries and moves. Don't you know it, he pounced on a field mouse outside the Kennedy Center. I did not see it under the snow, but you know Sunny most definitely did!

Tuesday, February 19, 2019

Tuesday, February 19, 2019 -- Mattie died 492 weeks ago today
Tonight's picture was taken in July of 2009. Little did we know at that point in time that Mattie was dying. It is almost hard to believe when you look at that smiling face. Despite the bald head, he looked like the picture of health. Mattie loved his sandbox. In fact, that evening we ate outside, while Mattie was playing. To this day, this sandbox sits outside our deck door, and many of the children in our complex play in it. 


Quote of the day: Dreams say what they mean, but they don't say it in daytime language. ~ Gail Godwin


I received an email today from a friend. A friend who actually knew Mattie when he was healthy. This particular friend has a Mattie dream at least once a year and remembers it. I am lucky that my friend always tells me about it. This is what she wrote to me today.........................

I had a dream about Mattie last night. I was walking outside from one building in the complex to another. I noticed a small boy peering inside the sandbox (the one outside our deck).  The lid was quite heavy for him and he was struggling to keep it up while looking inside at the same time. As I got closer I stood there frozen looking at him-it was Mattie about 6 years old and quite healthy! He came over to me and said... I remember you. I crouched down to his eye level, and he smiled at me. Confused I asked Mattie, what are you doing? With a serious look he told me he got very sick and pointed to the window and said that was my room…see? I looked in the direction he was pointing, and he then said I like to watch my mommy. I looked back at the window to see if I could see anyone and when I looked back, he was gone.

As I was reading this message, I thought at first it was just cute or rather coincidental that my friend has these dreams. But when I read that the dream involved the sandbox, and Mattie saying he was watching me through the window, it made me pause! Actually, the whole notion gave me chills, because look at this photo I took today. 

From my office window, I can look at the green frog sandbox, outside our deck door. So from my friend's dream, it sounded as if Mattie watches me through the window as I am working from his sandbox. Who is to say this isn't happening? Who is to say it's just a dream.

In fact, I told me friend that her dream seemed more like a message than a dream. Because the way in which she recalled the dream and the words she used to describe the dream seemed more like something Mattie would actually say to me. 

I think there are things in life that we don't always understand and certainly when grieving the death of a child, which makes NO sense to begin with, anything is possible. I like the notion of Mattie playing in his sandbox and him watching over us/me. So I am sticking with that vision tonight. 

Monday, February 18, 2019

Monday, February 18, 2019

Tonight's picture was taken in March of 2009. I honestly did not remember this photo at all, until our Facebook friend, Tim, posted it on my page. When he did, he actually cropped it so there was no cake or context to the photo. Once he mentioned that the original photo had a cake in it that read, Thank you, I knew immediately the moment in time this photo was taken. Mattie and I took part in the ribbon cutting ceremony of the child life playroom at the hospital. After the ceremony, there was a party! Mattie typically never turned down a party, and I never turn down cake. 


Quote of the day: If we had no winter, the spring would not be so pleasant: if we did not sometimes taste of adversity, prosperity would not be so welcome. ~ Anne Bradstreet


When it comes to winter, I would be just fine without it entirely. I do not need to have it, to appreciate the warmth and beauty of the sun and milder temperatures. Having a dog, is a reality check, because regardless of the weather and temperature, you are out walking in it. Though I am not a cold weather person, it is actually more painful to walk Sunny in the dead of summer. When the humidity is a killer and I am not sure which one of us is going to pass out on the sidewalk. 

Unlike yesterday, today was a much better day. My headache was much more manageable and I could see light and hear noise again without feeling totally ill. Amazing what difference a day makes. However, now that I am re-focusing from being away, I see the ton of work before me. Before we leave next week for a conference, I literally have a list of things that must get done. These back to back trips make it hard to accomplish anything, but hopefully it will be a productive week. 

Sunday, February 17, 2019

Sunday, February 17, 2019

Tonight's picture was taken in March of 2009. Mattie was in the clinic and truly wanted a hot pretzel! Now when you are in the hospital, fulfilling such a request is close to impossible. But thanks to friends and our network, no demand seemed too challenging or difficult to meet. 


Quote of the day: Every day is a battle. He has great difficulty getting past these migraine headaches and he takes a cocktail of medications to get through it. ~ Keith Sullivan

We each have an animal in our home who is attached to us. For Peter it is Indie the cat!

For me it is Sunny. Today I woke up with a wild migraine. It was so bad and debilitating, that within an hour of waking up, I had to return to bed. I spent the majority of the day there. If it weren't for all my migraine rescue medications and medications for nausea, today would have been even worse than it was. 

In any case, Peter escorted all the animals out of the room so I could rest. However, Sunny did not like that and instead found a way to open the door and then jumped on the bed. Apparently he was worried about me. He spent several hours with me while I was resting. He is a true pal!