Saturday, February 13, 2016

Saturday, February 13, 2016

Tonight's pictures were taken in February of 2006. I posted a similar photo last night of Mattie creating hand made Valentine's Day cards for his friends and teachers in preschool. Mattie absolutely loved these creative projects and could really focus on them and in a thoughtful manner. 

This was what some of the finished products looked it!














Quote of the day: When a child dies, a parent loses a part of themselves, he said. “Your whole world ceases to exist and you’re nothing but a shell of the person you once were. Your mom has dealt with it in her way, me in mine, and you in yours.” He lifted his hand off John’s gravestone and rose. “Your mom hates the world, I avoid it, and you try to save it. ~ Nicole Williams


What an amazingly powerful quote. However, I think it is quite possible to "hate the world, avoid the world, and save it" all at the same time. Well maybe not at the same time, but clearly ONE person can have all these emotions when their child is no longer with them and a part of this world. 

Innocently we went to Pier 1 today to buy these beautiful pink pressed glasses in the store. I knew exactly which glasses I wanted to purchase before entering the store, but one of the store representatives came over to assist us anyway. He helped us track down the glasses I saw on line and was interested in buying. While discussing the glasses he innocently asked how many glasses I wanted to buy and how many people lived in our home? He asked about the number of people because that would change how many glasses he would recommend us purchasing. I am sure this is was a typical question, but the question has bothered me all day. I answered him by saying it is just the two of us, but of course in the back of my mind, I wanted to say...... that is a complicated question for us because we used to be three and now we are two. When we were three, we had much more action and life in our home and I would have needed more glasses. 

As a follow up on Lovie the dove, I called City Wildlife today. Each animal that is checked into the facility is given a patient ID number. You can call up the center and get updates about the animal. So this morning I called. At first they had a hard time locating the patient number in their system. But after that struggle, the vet on the phone told me that Lovie was doing okay, and was getting supportive care. Then literally ten minutes later our phone rang and another person said that they gave me misinformation. That there were two doves at the center and Lovie was the dove that had to be put to sleep. That her injuries were too extensive for her to be able to live. So they humanly euthanized her. I was absolutely shocked and said that perhaps I should have left her on our doorstep. She then said, that I did the right thing and that Lovie at least died humanly. Then literally within minutes of that call, we got a third call saying that the euthanized bird was NOT Lovie. But the other dove in their care. By this point I was so crazy over these three phone calls, I asked to speak to their clinical director. The clinical director is who I spoke to yesterday when I dropped off Lovie. Today the clinical director apologized for the ID mistake and all the misinformation. But she confirmed for me that everything we discussed yesterday was in motion today. Lovie is on an IV, on pain meds, and scheduled for an x-ray on Monday, because of an injured wing. We have concluded that Lovie most likely got injured from flying into a window. 

Friday, February 12, 2016

Friday, February 12, 2016

Tonight's picture was taken in February of 2006. We decided to make valentine's together for all of Mattie's friends in preschool. I may have cut out the hearts, but Mattie did the rest. We always did creative projects like this on the floor of our dining room! I knew I had these photos, but I couldn't find them anywhere! It was truly bothering me. So I went back on line to our Shutterfly account and sure enough..... I FOUND THEM!


Quote of the day: The greatness of a nation and its moral progress can be judged by the way its animals are treated. ~ Gandhi

I went to my five hour licensure board meeting today. When I left our home, Lovie was sitting by our door, and when I returned there she was!!! 

I was telling my mom about Lovie, and this morning she encouraged me to have her examined and cared for. Not that this thought did not cross my mind, but HONESTLY I thought, what vet is going to see a wild bird?  So when all else fails, I turn to Google!!!

On Google, I located an incredible resource in DC, City Wildlife. Their mission is: to address the need for wildlife rescue and rehabilitation in Washington, DC. Over the past several decades, local wildlife habitat has been severely depleted, and wild animals have had to adapt to living in close proximity with people. Each year hundreds of wild animals in DC are unintentionally harmed by people and the urban environment.

The wonderful part about City Wildlife is they rehabilitate animals and then return them to nature. They provide care for any animal you drop off for FREE. In fact, this weekend, they are having their annual Valentine's Day tour of the facility, on Sunday (noon to 5pm). More details, go to:
http://citywildlife.org/be-my-valentine-2016/

When I spoke to the folks at City Wildlife, they told me how I should go about capturing Lovie. They suggested a towel, thrown over her to prevent her from flying and then to place her in a box with some holes in it. 

Well that all sounds easier said than done. Typically I let Peter handle touching stray animals and wild life, but since he was at work, I had to rise to the occasion. I can honestly say if my neighbors saw me, they would have been laughing. Lovie gave me a run for my money. Despite being injured, she can run and jump. Of course she was frightened and I did not want to make it worse, but I knew she needed treatment. So that was my motivator. 

She managed to escape me on our deck, and she walked down our commons area onto my neighbor's porch. Fortunately my neighbor has a milk crate for her plants. I was able to put the milk crate over Lovie. She tried for minutes to escape the crate and this wore her out. So by the time I pulled the crate off of her, she had very little energy to run.... and I threw the towel over her and placed her in a box with a towel and bird seed.  

Now once I caught Lovie I then had to figure out how to get to City Wildlife. It isn't in a part of DC I traverse often. But thanks to GPS, I found it. 

The ladies who work at City Wildlife are delightful and true animal lovers. It was a delight to see this facility and to know such a resource exists for our DC animals. 

Thursday, February 11, 2016

Thursday, February 11, 2016

Tonight's picture was taken on February 12, 2008. Mattie was in his room and jumping on his bed with his "girlfriend," Charlotte. Mattie was very fond of Charlotte, and even gave her the plastic ring he got from the dentist. When Mattie gave the ring to Charlotte, he told her it was an engagement ring. Do not ask me how he came up with this, he just did this on his own accord. I had no idea he wanted to do this. What cracks me up about this photo was the simple fact that Mattie had not only his mattress on the bed, but also an inflatable aeromattress on top of his mattress. Literally he went through a phase where he wanted to sleep like this but because of safety reasons, this did not last long. As you can see though, having two mattresses on the bed made for great jumping! Which he introduced Charlotte to that day!


Quote of the day: In all religions, the quickening spirit has been symbolically represented as a bird. At the baptism, when Jesus' body was in the water, the Spirit of Christ descended into it as a dove. ~ Max Heindel

Next week I am scheduled for an hour long MRI, which should be a pip! Especially since my head will be immobilized for the scan. However, before taking the scan, the doctor wanted me to have a blood test. So I went to Virginia Hospital Center today to their outpatient laboratory for this test. This is where I always get my outpatient labs done and never had a problem with it. However, today I learned that the outpatient lab doesn't take my insurance anymore (a new policy!). My insurer works only with Labcorp for all outpatient blood draws. Needless to say I was NOT thrilled. The lady working registration couldn't have been nicer and felt bad that I had to experience this change. I knew it made no sense to take out my frustration on her. In any case, thanks to the power of a smart phone, I quickly looked up a Labcorp facility near the hospital and got that task done.

However, when I got home, I found this sight!!! I have named my dove visitor, Lovie. Lovie literally follows me around on our deck and I suspect she has an injured wing since she can't seem to fly. At one point when I opened the door, I thought she was going to come in. It is bitterly cold outside too, so I assembled a box with a towel for her. We shall see if she migrates in there and I have left seed on the deck for her too. 

But all day, I have been wondering what it means to have a dove come visit you and STAY. Honestly this is very unusual, and I have been feeding the birds for 14 years at our home. The last time Peter and I experienced a Dove visit and encounter, Mattie had cancer, was in pain, and several months later we learned his cancer had metastasized. So I have to admit, doves are like an omen to me. 

Yet I spent a few minutes researching doves today and this is what I found..... 

Doves call you to regain your serenity. Do you feel off balance, or out of step with the world? Are you harried or frazzled? The dove reminds you to take a deep breath and release all your tension and stress.

Operating constantly with a cynical worldview is exhausting. In a situation that is frustrating or upsetting to you, a dove may be encouraging you to wipe the slate clean and start again. 

Stereotypically, the dove is portrayed as white and gentle, sweet and loving. The dove is a symbol of the Holy Spirit in Christian iconography.

Doves call you to regain your serenity.... winging their messages of love to our hearts from the spirit world.

So I would like to think that Lovie is sending me feathered messages from Mattie!

Wednesday, February 10, 2016

Wednesday, February 10, 2016

Tonight's picture was taken on February 10, 2009. Seven years old today. That alone is hard to come to terms with.... this is what our life looked like seven years ago. 

Whenever we were home between treatments, which never lasted long, I tried to encourage Mattie to use his walker and take a few steps. Each steps was exhausting and painful. What I love about this photo was Mattie's head. Even bald Mattie had an adorable and perfectly shaped head. 






Quote of the day: You can not do a kindness too soon for you never know how soon it will be too late. ~ Ralph Waldo Emerson

As I mentioned last night in the blog, Peter and I were interviewed by Karen Allyn at 8:30pm. Karen is a Washington Broadcaster, whose show airs on a local TV channel in Montgomery County, MD. 

Karen contacted me after our Washington Post article was published. She felt that our human interest story would resonate with her audience and she also wanted to bring attention to our mission and work. 

When we got to the studio we have the opportunity to chat with Karen's daughter, and the irony is my college roommate knows Karen and her family. It is a small world indeed. 

Peter and I have different conversational styles and we focus on different things at times. Which is actually a good, because with both of our skill sets we can run a Foundation. Which is no easy task, yet for me I went into this interview hoping for one thing, and landed up upset and not happy about how it went. I honestly thought we would have more time to focus on Mattie and his battle and have a discussion on how specifically that led to the formation of the Foundation, and what purpose the Foundation serves to us. All of that would be emotionally laden content, and frankly I can understand why Karen steered us away from this. That would probably be a turn off to her listeners. Yet this content to me is REAL and important and when I can't lay the ground work for the Foundation and our work, I get frustrated. 

There was a lot of content to cover in 26 minutes, but Peter did a stellar job at highlighting the Psychosocial Standards, why they had to be developed and the next steps needed to get them implemented. 

However, Karen asked us a good question.... why haven't standards been created before now? Mainly because it seems like a no brainer that such psychosocial support would be needed. 

However, despite the fact that this may seem like a no brainer, I think the majority of health care professionals do not understand or value the importance of psychosocial care. In fact, the overall stigma of mental health issues is pervasive in our society but they are also prevalent in our medical system. I truly believe that some physicians can't grasp that toxic cancer treatments have devastating psychosocial effects on children and their families. I know it was true in our case. After Mattie's surgeries we reported PTSD like symptoms and the responses we kept getting from the medical community were that Mattie was having a reaction to pain medication. Of course upon psychiatric assessment, we learned that indeed Mattie had profound issues that produced several diagnoses: clinical depression, anxiety, and medical traumatic stress. So part of the explanation for the fact that psychosocial care is not included in comprehensive cancer care has to do with the acceptance within the medical community and because most of this care isn't reimbursable, it gets looked upon as an adjunct service. If it can get funded by private philanthropy great, but if not, no problem.

The other issue is there needs to be a demand. The childhood cancer community, which includes family advocates have to start demanding this type of care. When there is a demand and pressure, systems tend to comply. Cancer advocates are great about beating the drum for bio-medical research and drug development. Yet research shows that psychosocial care increases medical adherence to treatment, helps to manage pain symptoms, and enhances overall quality of life. Therefore, if the WHOLE child is effectively treated, both the bio-medical and psychological aspects of care must be addressed. It is a mindset change that is needed for effective 21st century cancer care. 

Tuesday, February 9, 2016

Tuesday, February 9, 2016 --- Mattie died 334 weeks ago today.

Tonight's picture was taken on February 18, 2009. The lady next to Mattie is Katie, one of Mattie's HEM/ONC nurses. Mattie loved playing with Katie's grey sweater. Which she wore in the hospital when she was cold. The beauty of this sweater is it had a belt. Mattie loved to use his feet and tug on the belt and pull it through the loops to remove it from Katie's sweater. It was a running gaming they had with each other. In this particular case, Katie was wearing a yellow gown because Mattie probably had a threat of an infection. Mattie had many of these near misses in the hospital, but usually after extensive testing of his blood, it was negative.... meaning he did not have a bacterial infection. 


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


A couple of weeks ago I was contacted by Karen Allyn. Karen is broadcast journalist, who was intrigued by our article in the Washington Post. So she asked whether Peter and I would do a guest spot on her internet based talk show. I had to get up to speed about what an internet show was even about, because I understand TV and radio, but am not familiar with the internet version. 

So this evening, we will be interviewed at 8:30pm in Rockville, MD. We will be talking about Mattie, our experiences with childhood cancer and why we started a Foundation. Hopefully I will have more insights to report tomorrow night. 

Forward Motion:
http://fomoka.weebly.com/

Monday, February 8, 2016

Monday, February 8, 2016

Tonight's picture was taken on February 19, 2009. Mattie was quarantined in his room because of the fear that he had a contagious infection called c-diff. Needless to say they tested his blood numerous times and thankfully within a day or so we learned Mattie did not have this bacterial infection. Which was a blessing because it was hard enough to be isolated for a day, but once you have c-diff, you are isolated for three weeks for treatment. Can you imagine being isolated in this postage size room for three weeks?

That day in isolation, Linda (Mattie's child life specialist) and Anna (Mattie's physical therapist) came into the room to do a therapy session with Mattie. Despite the isolation there were rockets going off in our room and as usual it wasn't boring. In the doorway was Brandon, Mattie's best buddy. Brandon was in the hospital with a ruptured appendix and had to have surgery. Though Brandon couldn't come into the room, notice it didn't stop him from interacting with Mattie and being a part of our day!


Quote of the day: The train blows, just when I was forgetting. Forgetting that I am here alone. And I wonder if those cars got held up by its passing, just as I have yours. ~ Kellie Elmore


I went to visit the next doctor in my arsenal today, an orthopedist. I wanted to consult this doctor on the neuropathy (weakness, numbness, and pain from nerve damage) I am having in my leg and arm. I discussed my theory that I feel I got these symptoms after taking a long term anti-inflammatory drug for Costochondritis, which I got after my surgery in November. My internist said such a reaction wasn't possible, but the orthopedist doesn't disagree with me. She says it is possible. But to be honest no one can really explain why I am having these symptoms which is why next week I am headed for an hour long MRI. It is pretty awful to go into an MRI chamber head first for an hour. I know the prospect of such a test used to freak Mattie out, which was why he was always sedated. I totally get that. 

I love when the MRI was prescribed to me, the doctor basically said it is just an MRI, no big deal. I actually laughed because I could have given her a lecture over that comment alone. I would think for the average person, taking an MRI for an hour would be daunting. It is a tight space, when your head is involved, they actually put something over your head to keep it in place, and then you have these ridiculous sounds blaring at you and jostling your body. It isn't good, but then on top of that I also have all the memories associated with Mattie and his MRI scans. So in all reality when she says the MRI is no big deal, it is actually quite a big deal indeed. 

I am signing off for today because I have been dealing with a non-stop migraine for three weeks now. This happens periodically for me and when it does it is absolutely debilitating. I have no warning as to when this will come on nor when it will dissipate. 

Sunday, February 7, 2016

Sunday, February 7, 2016

Tonight's picture was taken on February 6, 2009. What I love about this photo is it illustrates the entourage that accompanied Mattie on his physical therapy sessions. Standing behind Mattie was Jenny (one of Mattie's art therapists), Denise (Mattie's social worker), Jessie (one of Mattie's art therapists), and Anna's physical therapy intern. Who you can't see was Anna, but she was there leading the pack, holding Mattie's IV and pushing his IV pole. This may seem cute or perhaps over the top, depending upon your advantage point. But in all reality Mattie needed this kind of energy and support from those around him who cared for him. Mattie was physically exhausted from treatment and was in pain from both surgeries and battling cancer. Therefore, this incredible show of support was the exact motivation that Mattie needed and I will never forget. 


Quote of the day: I feel I’ve lost every part of me…there’s nothing left but the parts I’ve given to you. I need you to hold those pieces together. Please don’t forget who I was…then…then there really will be nothing left. ~ Cassandra Giovanni

Not being a football fan, I have trouble with the obsession over the Super Bowl. I am not sure what troubles me more, the sport itself or the OUTRAGEOUS amount of money spent over this production. It is most definitely a production, starting with the half time show (which with every successive year pushes on us LESS and LESS musical talent, and instead makes up for this lack of class with lights, animation, and special effects!) and ending with the many TV commercials generated for this special night. 

One of the ads this year is called "Super Bowl Babies." Basically it highlights children who were conceived in the city of the winning team, nine months after the win. In the CBS News ad below, it says, "for 49 years, our fans have rallied around their favorite teams on Super Bowl Sunday and passed their pride and passion down to the next generation," said NFL Chief Marketing Officer Dawn Hudson. "We are excited to celebrate our football families by shining the spotlight on 'Super Bowl Babies,' those fans born into a lifelong love of their team and the game."

This commercial seems to directly point to our society's misdirected priorities and yet, I bet it becomes a very popular and well watched ad. But to me, we are more wrapped up as a society over a sport and the "family" such a sport produces than bringing attention to more serious minded topics such as childhood cancer. I see it daily on social media sites.... it points to what our society wants to see and "likes." What is liked and goes viral is typically zany, spoofy, or happy things, certainly not sad topics or substantive messages. 

Ideally I would love to tell them to hold the half time show, forget about each Super Bowl commercial and put the money spent on all this nonsense to something tangible that will benefit our communities. Of course, I realize I am in the minority!!! If you haven't seen the ad I am referring to, I posted an article about it below and the link to the ad itself. 

http://www.cbsnews.com/news/super-bowl-50-nfl-ad-celebrates-super-bowl-babies/

The actual ad:
https://www.youtube.com/watch?v=9KqekigARfE&feature=player_embedded