Saturday, July 12, 2014

Saturday, July 12, 2014

Tonight's picture was of Mattie giving me Peter (yes it is Peter writing tonight's blog) a surprise model magic birthday cake, a project that he had been working on with his Child Life Specialist, Linda and his art therapists, Jenny and Jessie.  It is amazing to think that this moment was over 5 and half years ago, and that it would be the very last of my birthdays that Mattie ever celebrated with me.  As the picture shows I was very overwhelmed and so honored that my son, who was going through the very worst experiences of his life, had the desire and took the time to think of me and to make me a present for my birthday... but then again, anyone who knew Mattie would know that this was the kind of person he was.  To this day it still stops me in my tracks when I see that cake as I am flooded with memories, some pleasant some painful, and of course marvel that this model magic cake is still with me today yet my Mattie Bear is not.

Quote of the Day:  They say time heals all wounds, but that presumes the source of the grief is finite.  ~ Cassandra Clare, Clockwork Prince 

Hello everyone, it is Peter writing the blog tonight as Vicki has been at it 24x7 on one of the two book chapters she is writing this summer in support of the Foundation, and frankly, she has written all that she can write today, so I am stepping in as a substitute. 

In writing this blog, I took a spin through various quotes about time.  Perhaps it is because I am getting older or rather more perceptive of the repetition in life, but to me, as each year passes it is time that seems to go by more quickly.  

Today's quote is one I came by that speaks directly to me and Vicki and those who have lost a child... as grief is not finite, it is infinite, like time.  Grief is also like time in that it is perpetual, always coming at us, even if sometimes we choose to ignore it, it is an unstoppable force and one best learned to live with than attempting to resist.  Most normal people who have not gone through such a profound loss may still believe, if they stop to ponder the topic, that grief is something to experience and then to learn from and move on with one's life.  However, this is not the case for us or for others who have lost a child.  Grief is always with us, always present and beside us there is our only companion... time, silently yet persistently marching side by side with us in our grief. 

The birthday cake to me is a symbol for many things.  I see it and I see Mattie and his beautiful self and all that he was and all that he did and said.  I no longer stop and wonder why this happened to him or to us as nothing productive or helpful ever comes from this dialogue.  I am instead reminded of time.  Always time.  How long ago it was since he gave me this cake.  How many birthdays has it been since he was alive to celebrate my birthday. How long was it since I last saw Mattie alive (1,768 days).  You see Vicki and I no longer have the milestones of a growing child and a life full of wondrous prospects that a growing child brings to mark each passing day.  All we have left are the finite memories of our deceased son and the infinite tick of passing time. 

Tennessee Williams said in The Glass Menagerie that, "Time is the longest distance between two places”... a profound statement indeed and insightful as I find myself now nearing five years from the date that Mattie died and all that I have left of Mattie to mark the difference is the passage of time.  

On a lighter note, Vicki's work on the Psychosocial Chapter for an ASCO sponsored book (ASCO is the American Society of Clinical Oncology) is moving along swiftly even though she may say "it isn't".  Vicki is a truly gifted writer (those of you who are regular blog readers already know this), and from the drafts that I have read, Vicki is going to make this chapter sing.  When Vicki takes on a project she leaves no stone unturned, no drawer untouched and no detail forgotten, which frankly, to quote Vicki's childhood friend Karen, "Exhausts me just to watch".  Vicki, like her son, is infectious and leaves her indelible mark on everyone she engages, and it is this kind of rabid and dogged determination that gets things done and will make a difference in the lives of the children and their families living with childhood cancer.

Friday, July 11, 2014

Friday, July 11, 2014

Tonight's picture was taken in July of 2009. Mattie was home from the hospital and unfortunately this was how Mattie moved around after his surgeries, which were performed in October and November of 2008 to remove his bone tumors. Not only did he not move around well, he basically was quite impaired. Mattie could no longer just stand up and walk. Instead, he would basically slide down the couch and crawl along the floor. However, most of the times, one of us carried him around which was challenging considering he had IVs attached to him and a central line connected to his chest. Accepting Mattie's physical limitations were painful, but the psychological consequences this all had on his daily life were heart wrenching for an active seven year old boy. Which was why as Mattie's cancer journey continued he isolated himself from others in his life. He saw himself as different and being around healthy children and people on the "outside" (not in the hospital or dealing with cancer) made him very sad. 


Quote of the day: I'm not upset that you lied to me, I'm upset that from now on I can't believe you. ~ Friedrich Nietzsche


I have been contending with licensure board issues all summer. Unexpected issues that fell onto my plate and today we had another meeting. That is two this week alone. Nietzsche's quote is apropos for today! I can't discuss the issues I am dealing with, but I found out a great many things today that were upsetting. Particularly as it related to the trust and confidence that I placed into the people I have worked with over the years. I pride myself on being a good judge of character and today was a real eye opener. I have misjudged a group of people I have trusted for close to six years. In particular, the worst part is this group took advantage of my situation when Mattie got sick with cancer and I wasn't around as much to give oversight and direction. I am sure this is confusing to read about and unfortunately I can't write much more about it here. Needless to say after this meeting I thought my head was going to explode. 

While this nightmare of a meeting was going on, I kept my friend Linda waiting for me for lunch. Since we had a licensure meeting earlier in the week, I did not think today's meeting would be as long. My mistake! Thankfully Linda is not only a good soul, but she has great patience and understanding. Because I kept her waiting an hour. I do not think I would have been as forgiving as her! Thankfully though Linda waited for me, since the afternoon of conversation and friendship made up for quite a morning. 

Thursday, July 10, 2014

Thursday, July 10, 2014

Tonight's picture was taken in July of 2009, two months before Mattie died, or one month before we learned that Mattie's cancer had spread throughout his body. Amazing what a difference a month can make! I typically do not show this photo because it illustrated just how emaciated Mattie was by that point in his treatment. His right leg, which was operated on, was practically skeletal looking rather than the size of a typically growing boy his age. Despite how frail Mattie was, he wanted to help paint our deck. Mattie was always my painting helper, and he was an excellent painter! He was precise, neat, and knew how to get the job done. My kind of painter!


Quote of the day: It's funny. All you have to do is say something nobody understands and they'll do practically anything you want them to. ~ J.D. Salinger


I remember in high school reading JD Salinger's, A Catcher in the Rye. I loved that book, and when I came across this quote tonight, I paused and first said, what?! But then I thought about an article I read today and put it in the context of Salinger's quote! When I did that, not only did the research article make sense, but then so did Salinger's quote!

I am working away at writing a chapter for a cancer book, and in the process I read an article today that drove me BONKERS! I mean bonkers. I will quote one paragraph from the article to give you a flavor for what could have possibly sent me over the edge......................

"As cure rates began to improve, Jan van Eys emerged as one of the earliest and most eloquent researchers to understand the concept of the fully cured child with cancer. He conceptualized cancer as another normal childhood illness - a major stumbling block, but one that could become just a chapter in a child's life. Moreover, a truly cured child would be similar to same-aged peers in development, maturation, achievement, and personal outlook for the future."

Well I am not sure where to begin with this! I continue to see the word "cure" in childhood cancer articles, and the claim to such remarkably high cure rates, like 90% chances for long term survival is simply NOT TRUE! Of course, that maybe true for children who have leukemia. But if we factor in children with all other forms of cancer, this 90% cure rate, would drop significantly! Osteosarcoma doesn't have a 90% cure rate, not even on a good day. Try 60-65%, and in Mattie's case, with multiple lesions, he had a 15%-20% chance of survival. 

So this author's notion of childhood cancer being a "normal childhood illness" at some point in the near future is a pipe dream. A definite pipe dream in my lifetime given the lack of funding and progress in drug development in the last twenty years. So I am not holding my breath for a cure for diseases like Osteosarcoma, where the number of kids impacted each year in the United States is so small in comparison to adults with cancers. There are no incentives for drug companies to manufacture drugs for these children. It is plain and simple. 

How this ties into Salinger's quote however, is I think other researchers have been enamored by van Eys' work and vision. I am not sure they truly understand the ramifications of what van Eys is saying, but they embrace it and pass the message along and publish it. The problem with also promoting a child who has survived cancer as just the "normal child" is that we know all too well about late effects. These are the side effects that occur from the toxicity of the treatment that these children and teens endured. The side effects can range from heart issues, hearing issues, high blood pressure, diabetes, sterility, and even secondary cancers to name a few. These are just the physical side effects, there are also a host of psychological ramifications as well. So even if a child physically survives cancer, they will never be fully cured and just like their same aged peers! If it happens, it is rather!

I am not sure why researchers continue to promote such falsehoods and use misleading facts and words! It truly bothers me and as I sit and work on this chapter, I find it is very hard to write objectively because I am a parent who lost a child to cancer. I have a different perspective and at times when I write, I catch myself writing as a parent and not a researcher/professional.

Wednesday, July 9, 2014

Wednesday, July 9, 2014

Tonight's picture was taken on April 16, 2002. Mattie was about two weeks old and being transported in his car seat into the car. As new parents we took the whole issue of movement very seriously, as you can see..... with the safety belt and all. Mind you, Mattie wasn't in the car yet in this photo. Somehow I had it in my mind that his body, which had no usable muscles at that age could project himself out of his seat and fall. I wasn't going to take any chances. Rather ironic, in a way. I was the mom who planned for all sorts of contingencies! Of course no matter how well one planned, nothing could have prepared me for July 23, 2008, the day Mattie was diagnosed with osteosarcoma.


Quote of the day: Nothing is ever really lost to us as long as we remember it. ~ L.M. Montgomery

Today I had the opportunity to meet up with my friend Catherine to go shopping and out to lunch. This was a nice change of pace for both of us. I have spent an inordinate amount of time working and by a computer this summer. So human companionship and time conversing are gifts. Along my journey today, I found these three pieces. I am sure they just look like a plate, a small bowl, and a mug. But to me they actually mean much more than that. They symbolize memories! When I saw the blue plate, it naturally reminded me of Mattie. As my faithful readers know, Mattie's symbol in his first preschool classroom with Margaret was the Moon. Why? Well because Mattie's name began with the letter M and so does the word Moon. I suppose Margaret could have picked Mattie Mouse, Mattie Marshmallow, or Mattie Mountain. But she didn't. She picked Mattie Moon. Mattie also gravitated to the sun. He drew all of his pictures with a sun in it and all of his paintings also always had a sun in it! In fact in November of 2009 (after diagnosed with cancer), when Mattie met with his art teacher to create a special canvas, he produced the "Mr. Sun" painting which hangs in our dining room. A painting that is five feet wide and became the backdrop for the Foundation's logo. Therefore, when I saw this plate today, it just reminded me of Mattie. 

When I saw the small wheat bowl, it immediately reminded me of my maternal grandmother. She had a china pattern just like this. My parents still have many of these pieces at their home in California. When I was growing up, my grandmother lived with my parents, and I recall seeing this china often. We did not use it daily, only on certain occasions, but I remember it being special to her. My grandmother was a very loving, compassionate, and nurturing individual, who I feel greatly influenced the person I am today. 

As for the thistle mug, well this piece reminds me of my friend Margaret. Margaret and I loved to have tea together, but Margaret was not the tea bag kind of person. She would brew a real pot of tea, using loose tea! Which to me is a special treat! In any case, when I would visit Margaret at her home, she would serve me tea not in a mug but in a beautiful tea cup with a matching saucer. The pattern on the tea cup had a thistle on it. I always admired the thistle. In fact, we both loved the color purple and I always loved hearing how she inherited these thistle cups! I will miss my tea times with Margaret and chats over her thistle cups. So today when I saw this thistle mug, I immediately thought of Margaret. Now when I am home and having tea, I will think of our days together and I am saddened and at times frustrated and perplexed that all I have is just the memories. Just the memories of so many wonderful and meaningful people in my life who were taken far too soon.   

Tuesday, July 8, 2014

Tuesday, July 8, 2014 -- Mattie died 252 weeks ago today.

Tonight's picture was taken in July of 2002. Mattie was three months old and doing something he really did not care for.... which was lying on his back. He tolerated that slightly more than tummy time, which he absolutely despised! Mattie spent the first six months of his life sleeping on my shoulder. When he wasn't on my shoulder, he was sleeping in his car seat. But he was always upright. The joke that Peter and I always had was Mattie practically vomited on every floor in our home. His output was almost as fast as the input! Which is why keeping him upright may have been a more comfortable position for him in the long run, but it was what Mattie gravitated to, and given that he could cry for hours, he conditioned us well to follow his needs. 


Quote of the day: One of the greatest barriers to connection is the cultural importance we place on "going it alone." Somehow we've come to equate success with not needing anyone. Many of us are willing to extend a helping hand, but we're very reluctant to reach out for help when we need it ourselves. It's as if we've divided the world into "those who offer help" and "those who need help." The truth is that we are both. ~ Brené Brown


I would have to say that Brene Brown's quote most definitely applies to me in that I view myself more as a helper than a person who likes to ask for help. She maybe correct, there may be a perception issue about asking for help, in that I may not look competent in the area I am deemed the so called expert. There are so many reasons why we do not ask for help from others, and I suspect trust in those around us also comes into play. But with regard to the two issues today, I knew I needed help. One issue was regarding my licensure board. I can't go into the specific issue because of ethical reasons, but despite being the chair of this professional board, I knew it was important to take my vice chair to this meeting. My vice chair is a male, he is a clinician with years of experience and I also know there is strength in numbers. Together we would serve as a unified force. Not that I can't hold my own, but we are much stronger together and I was happy I asked for his help today. So that was my first observation for the day. The second observation was regarding the book chapter. I continue to be hitting my head against a wall, figuratively, not literally, and decided to just make sure that my frustration with the lack of research that I am finding is the reality and that I am not missing something. So I contacted two of the psychologists that I am working with on this book project to just verify my concerns. After all, the psychosocial care of children with cancer is their area of expertise, not mine. 

I think reaching out to others in the end and getting help is always the sign of maturity, of health, and also of being an effective leader. No one can know everything, and if anyone thinks they do that should also be a red flag. Life is about constantly learning, redefining one's self, and being open to other people's thoughts, knowledge, and expertise. I think at times I can find that Mattie's cancer has caused me to want to insulate myself from the world and others, but today showed me that at times we really do need to all work together. 

Monday, July 7, 2014

Monday, July 7, 2014

Tonight's picture was taken in July of 2002. If I had to title this photo, I would call it, "can you hear what I hear?" That day I was snapping photos of Mattie. I was trying to get his attention and honestly I had been trying to take photos of him for days because I wanted just the right photo to send out to friends and family! Needless to say this wasn't the one I selected! Mattie was three months old here and FULLY on!!!


Quote of the day: Keep your face to the sunshine and you cannot see a shadow. ~ Helen Keller

I made up my mind this morning that I was somehow going to plow through a stack of research articles, do more research article searching and then begin writing one of the book chapters that I committed to writing for the Foundation this summer. This has been an absolutely daunting task for me. Mainly because I am exhausted from a very full year with the Foundation. The notion of sitting still, concentrating by the computer, and delving into more research, and focusing on childhood cancer this summer really wasn't how I planned on spending my July. In fact, it makes me upset when I think about it. When I committed to the two chapters, I really did not give much thought to their deadlines. The hardest part to any project is starting and I find the most difficult part to writing anything is the introduction. I have an outline that I am working from, but even the problem with the outline is the questions I want to answer! In many cases I do not have concrete answers. Or at least answers that have solid research to back them up! That would be okay for my blog writings, but not great for a book chapter which will have an audience of medical doctors. Any case, as Heller's quote illustrated for us in a figurative sense.... I put my face to the sunshine today. I literally sat in Mattie's room, at my desk by the window all day. I had Mattie's fountains going on our deck, the windows open and I literally worked all day long. In one day's time, I generated one page. I realize, pathetic, but to me it was the hardest page to generate. I may keep going back at it, but it is a start, from which I will be building. I also have two of our wonderful psycho-oncologists who work with Foundation collaborating on this chapter with me. So it is a team effort, but as lead author of this chapter, I have the majority of the work and responsibility and though this is a chapter based on research, Mattie's case and history will be integrated within it to give the content meaning and depth. That to me makes the chapter much more complex and harder to write, because Mattie's story needs to be finely weaved in a meaningful manner. 

So I am signing off for today, because at this point, the computer and I are almost one!

Sunday, July 6, 2014

Sunday, July 6, 2014

Tonight's picture was taken on July 4 of 2008. This was literally weeks BEFORE Mattie was diagnosed with cancer. We took Mattie to the DC Aquatic Gardens. Another one of my favorite gardens to visit. July is the time to visit these gardens because this is when the water lilies and the lotus flowers are in bloom! They are spectacular! Needless to say it was a hot day, yet Mattie put up with my summer walk requests and of course ALWAYS in tow was a toy car. As you can see, Mattie had one in his left hand!


Quote of the day: When you have a wife who has been a tower of strength and shown more courage than you dreamed existed - that's the finest I know. ~ Lou Gehrig

No one could ever describe me as a baseball fan! I have some appreciation of the game only because Peter loves the Red Sox. Today Peter sent me a link to the MLB 75th anniversary tribute to Lou Gehrig's famous farewell speech, delivered on July 4, 1939. I am not sure what intrigued me more, the fact that this was a tribute speech, or that my friend Margaret just died from the disease named after Lou Gehrig. Needless to say, it made me pause and once again reflect upon my friend and her less than two year battle with this nightmare. 

If you are interested in learning more about Lou Gehrig and his life, I included a link below. It gives you some interesting information about his farewell speech! Lou Gehrig was considered the greatest first baseman for the NY Yankees (at the time), and to be diagnosed with such a deadly disease had to be beyond heart wrenching. Yet his farewell speech was thankful, appreciative, NOT bitter, and almost reflective of someone who lived a happy and FULL life! His farewell speech drew a crowd of 61,000 people and it was said that people were in tears, including Lou Gehrig!

An Awful Lot to Live For: 

http://espn.go.com/new-york/mlb/story/_/id/11159148/mlb-lou-gehrig-farewell-speech-75-years-later

Naturally Hollywood was moved to tears by Lou Gehrig's thoughtful words and wanted to tell Gehrig's life story. Gary Cooper starred in the movie, "Pride of the Yankees." However, in the movie Gehrig's farewell speech was significantly altered, which went against Lou Gehrig's wife's wishes. You can see the differences in speeches at the link below. Do note however, that the MLB tribute video uses the actual Lou Gehrig speech, not the Hollywood version!

Differences in speeches between Lou Gehrig's actual speech and the one used in the Hollywood movie, "Pride of the Yankees:"

http://espn.go.com/mlb/story/_/id/11158994/mlb-lou-gehrig-farewell-speech-gary-cooper-hollywood-version

I leave you with two videos. The first video clip is that of the MLB (Major League Baseball) 75th anniversary tribute to Lou Gehrig's Farewell Speech. The second clip is only a snippet of Lou Gehrig's actual speech. It seems impossible to actually find the total footage of that 277 word speech anywhere on the Internet. I know there is some controversy around the MLB video, because the video has voice overs. Meaning you will not only hear Lou Gehrig, but you will hear other well known first basemen from teams all around the Country today delivering parts of the speech on camera. Some fans take issue with this because they feel these first basemen are either spoiled, do not take the words they are delivering seriously, and the list goes on regarding the commentary which of course may have SOME merit. However, I guess all I would say is.... try to move passed that and capture the message. 

MLB Tribute - 75th anniversary

http://www.youtube.com/watch?v=3oW1RuGqw7g

Lou Gehrig's Farewell Speech

http://www.youtube.com/watch?v=_SKyfGK9brs