Saturday, February 27, 2016

Saturday, February 27, 2016

Tonight's picture was taken on February 14, 2004. Mattie was not even two yet! If you had to describe Mattie in one word it would be "on!" Unless ill or sleeping, Mattie was in constant motion, always thinking, and creating. He loved having a basket of books in our living room and as you can see he picked out two he wanted read.


Quote of the day: Absence is a house so vast that inside you will pass through its walls and hang pictures on the air. ~ Pablo Neruda

Peter and I were working on Foundation things today and this Cooper's Hawk just kept swooping around. Peter chased him away several times. It was in the 40's today and naturally this bird is looking for food...... specifically my sparrows who hang out at our feeders. 

Look who was watching me closely while trying to take a photo!

In the midst of this cold weather, I can't get over what is blooming.... our daffodils! These are really hardy bulbs that keep coming back year after year. They are planted in our Mattie memorial garden. 

Friday, February 26, 2016

Friday, February 26, 2016


Tonight's picture was taken in February 2004. That weekend we took Mattie to the Natural History Museum in DC. We went to see the dinosaurs and they had a very interactive exhibit with screens on the floor for children to watch and step on. As you can see Peter was pointing things out to Mattie, who seemed puzzled by what he was seeing and yet intrigued at the same time. I love the lady in red behind Peter checking out the interaction before her eyes!






Quote of the day: It's really going to happen. I really won't ever go back to school. Not ever. I'll never be famous or leave anything worthwhile behind. I'll never go to college or have a job. I won't see my brother grow up. I won't travel, never earn money, never drive, never fall in love or leave home or get my own house. It's really, really true. A thought stabs up, growing from my toes and ripping through me, until it stifles everything else and becomes the only thing I'm thinking. It fills me up like a silent scream. ~ Jenny Downham


I am slowly returning to do the things I typically do in a given day, but I notice by the end of the day, I am very tired. Peter and I were on a conference call this morning with our research team, discussing next steps. It is funny how our minds think differently from the rest of the team. The researchers are (rightfully so) focused on rigor and next steps in the studies that need to be performed, where as Peter and I are about the practical. How do we begin to hit the ground to implement the standards. Naturally we all have this end goal, but because of our lens, we have different strategies about addressing this large task. For most of the call, I was quiet, but at one point, I opened my mouth. I did not think I said anything earth shattering, but literally after I spoke there was dead silence on the phone. To which Peter then spoke up and asked whether he and I were the only ones on the phone call. Needless to say, this has made me chuckle ALL day long. I am not sure why, but it has. Given that these are the best and brightest in the field on the phone with us, I am not expecting to be catching anyone by surprise. I am not sure if surprise is the right word, or perhaps from my lens as a parent who lost a child to cancer, I shed a different reality. 

Below are some of the new on-line articles that have been released about the Psychosocial Standards. Keeping all this organized is a feat, but very necessary!

ASCO Post:
http://www.ascopost.com/issues/january-25-2016/american-psychosocial-oncology-society-endorses-psychosocial-standards-of-care-for-children-with-cancer-and-their-families/


NIH Record:
https://nihrecord.nih.gov/newsletters/2016/01_29_2016/story4.htm


Society of Pediatric Psychology (p.11):
file:///C:/Users/HP%20Desktop/Downloads/SPP_Spring_2016_final.pdf

Thursday, February 25, 2016

Thursday, February 25, 2016

Tonight's picture was taken in February of 2006. I actually took a series of photos that day of Mattie and his tinker toy sets that he built in our living room with Peter. As you can see he was one happy boy! Another funny thing about Mattie was he loved stickers. If you notice he has a sticker on his shirt, but he liked this sticker so much that even though it lost its sticky backing and kept falling off, Mattie decided to re-attached it to his shirt with tape!


Quote of the day: Love is stronger than death even though it can’t stop death from happening, but no matter how hard death tries it can’t separate people from love. It can’t take away our memories either. In the end, life is stronger than death. ~ Unknown


I mentioned in the February 10th blog, that Peter and I were interviewed by a local TV chat show host, Karen Allyn. On Tuesday the clip aired on Channel 21 (a local Maryland channel) and now the video is available on-line at this link: https://www.youtube.com/watch?v=lvnDl1ZdScY

The video clip is 27 minutes long and it was a "cold" interview, as I call it because we had no advanced warning on what Karen was going to ask us. We also had no way to prepare for which of us was going to talk first, who was going to say what and address certain points. Peter and I have different strengths and talk differently. Which is a good thing because between the both of us, we hit both the emotional aspects and the factual components of our story.  

Today, Peter and I were asked to do a podcast (a digital audio file made available on the Internet for downloading to a computer or portable media player) for the American Society of Clinical Oncology (ASCO--was founded in 1964 by a small group of physician members of the American Association of Cancer Research (AACR) who recognized the need for the creation of a separate Society dedicated to issues unique to clinical oncology). This was a completely NEW experience for me. I do not LOVE talking on the telephone in general and having to just talk into a phone and hold a conversation with Peter, without a moderator and someone asking us questions was hard!!! ASCO sent us questions ahead of time that they wanted us to address and talk to, but I have to say it was an interesting experience and can't wait to hear what the final product sounds like when it comes out in March. 

Wednesday, February 24, 2016

Wednesday, February 24, 2016

Tonight's picture was taken in February of 2006. Mattie was in our living room and doing what he does best.... constructing!!! Mattie designed this labyrinth and within it he placed himself. The many antics of Mattie, and rest assured he always brought me into his play schemes. 


Quote of the day: Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around. ~ Leo Buscaglia


I LOVE this Buscaglia quote. It is SO true!!! I had what I would call an unpleasant test today..... it was called an EMG, or Electromyography. I was administered this test because of the tingling, muscle weakness, and numbness in my left arm and leg. An issue that I have had for over three weeks. Thankfully my neurology office prepared me for this test and my dear friend Mary Ann warned me. Because you really shouldn't go into this test COLD without mental preparation. Why? Well the first 45 minutes of the test involves receiving electrical shocks up and down your arms and legs and then the next 45 minutes includes needles placed into your muscles to record activity. It isn't exactly comfortable.  

Electromyography (EMG) is a diagnostic procedure to assess the health of muscles and the nerve cells that control them (motor neurons). Motor neurons transmit electrical signals that cause muscles to contract. An EMG translates these signals into graphs, sounds or numerical values that a specialist interprets. An EMG uses tiny devices called electrodes to transmit or detect electrical signals. During a needle EMG, a needle electrode inserted directly into a muscle records the electrical activity in that muscle. A nerve conduction study, another part of an EMG, uses electrodes taped to the skin (surface electrodes) to measure the speed and strength of signals traveling between two or more points. EMG results can reveal nerve dysfunction, muscle dysfunction or problems with nerve-to-muscle signal transmission.

Overall these two tests could have been a nightmare. But they weren't. They weren't because of the two people who administered them. The nerve conduction study, with the electrodes was administered by a tech. She was fantastic and explained everything she was doing before doing it. She even prepared me for what an electrical shock would feel like, and she was accurate. The second part of the test with the needle placements was done by a neurologist. Not my neurologist, but his colleague. Dr. Cohen was an absolute peach. A true extrovert..... bright, a good listener, and communicator. We hit it off immediately. Being in a room for 45 minutes getting needles stuck in you isn't great, but he chatted with me the whole time. He first asked what I do. So I told him that I once was an educator but now I run a childhood cancer nonprofit. He could have let it go at that, but he didn't. He asked me why I decided to do that, and I told him about Mattie. I then discussed with him a word most doctors flinch at.... psychosocial care and how this is our mission. He then told me that psychosocial support is crucial in the medical field and that data shows that the medicine is more effective when you care for the whole person. I almost fell off the table. He is a rare breed, but based on how he was talking, I suspected he helped a family member with cancer. So I asked!!!

I was correct, both of his parents are cancer survivors and he explained to me how this impacted his life. So he said he couldn't imagine how losing Mattie affected me. He later shared his own physical health issue with me and how this impacted his life and how it makes him a better doctor. I CAN SEE that, because I want to clone him! But what he said to me next resonated with me and it has stuck with me the whole day. He said that he always worries about getting profoundly ill! This man was speaking my language, because I have the same fear and anxiety. So we talked about that today. He didn't make me feel crazy in any sense, but normalized my feelings. I need more medical professionals in my life that get that I am a bi-product of trauma and as such when I get ill, and the illness is prolonged I developed an inordinate amount of anxiety. I felt heard, understood, and for me NORMAL today. It turned my mind set around. 

I am happy to report that these tests are normal and I have no nerve or muscle damage, so we can take those issues off the table. I still may have other symptoms, and the tests weren't pleasant, but it does go to show you that how physicians make you feel can truly impact our medical health. 

Tuesday, February 23, 2016

Tuesday, February 23, 2016 --- Mattie died 336 weeks ago today.

Tonight's picture was taken in February of 2006. This was another classic Mattie photo.... building with tinker toys. That day Mattie and Peter built this wonderful tower and they were very proud to show it off!




Quote of the day: Ancient Egyptians believed that upon death they would be asked two questions and their answers would determine whether they could continue their journey in the afterlife. The first question was,’Did you bring joy?’ The second was, ‘Did you find joy?’~ Leo Buscaglia


I feel like I had a rough day. Awaiting MRI results for the spine and brain. The spine results came in and I don't understand them and then my doctor didn't post the brain results. Well that made me even more anxious. Needless to say, the results are posted and I don't understand either of them or the next steps. So that is how I went into teaching a class at the George Washington University. By the time I got to the University my head was spinning and each limb was shaking. How I pulled it together to teach for two hours is beyond me. 

The lecture I gave was about the impact on childhood cancer on a family and how bereavement affects the lives of parents forever. Before talking to a class I always ask them to raise their hands if they have a personal experience with cancer, knew a child with cancer, and are parents themselves. This class actually had one childhood cancer survivor in it, but no parents. It is hard to talk to people who are not parents because they do not get the true love and bond between a parent and child. They may get it theoretically or may reflect on their connection with their own parents, but it just isn't the same. 

I remember when I was in graduate school, pre-Mattie, and a guest lecturer came in to discuss grief and loss and focused upon the death of a child. She mentioned that this is the hardest form of grief to manage and cope with. At the time I processed that but did not take this information to heart, NOT like I do now. So I told the class tonight that one day when they have their own children or are involved in caring for a child, they will look back at tonight's lecture and have a deeper understanding for what I was talking about. 

Typically I come back from these lectures energized, but that wasn't what happened tonight. When I got home I was worn out and Peter wasn't back from work yet. So overall, I felt in a quandary and not sure what to do. I literally was going to walk back out of our home. I am not sure why, but between how I am feeling and two hours of talking and reliving Mattie's cancer and the impact it has on families did me in. 

Monday, February 22, 2016

Monday, February 22, 2016

Tonight's picture was taken in February of 2006. Mattie was pictured with a flower pot that his preschool class made, with their thumb prints. We were proud of this pot and had it on display for years. I am not sure what I like most here.... the pansies or Mattie's beautiful smile. 

Quote of the day: Unable are the loved to die. For love is immortality. ~ Emily Dickinson


I went for my afternoon walk today and along my journey I ran into our friend Maria and another woman, Detra, who we are fond of and manages the front deck in our complex. Maria and Detra shared a Mattie memory with me today. I frankly forgot about Mattie's visits around our complex, until they reminded me. Mattie used to love going down to our complex's front desk to greet the ladies who work there. But one of Mattie's motivations was to see if any packages and boxes were delivered. Because as he knew he used to get many care packages in the mail and was always eager to see what surprises awaited him. It is ironic, I write about Mattie each day and reflect on him, and yet I do not remember everything. Which is why when people share a side of Mattie that I may have forgotten, or their personal experiences with him, it means a lot to me. 

It was more like a spring like day today rather than winter! It was glorious and this is what the Potomac River looked like with the Kennedy Center and Roosevelt Bridge in the background. 

Crew teams were out on the water and to me that is almost like the first sign of spring! The water doesn't have ice on it and people were out and walking about. Last week as I walked by the River, there wasn't a soul around. It was too frigid. 

The sun setting over the Potomac. 

Sunday, February 21, 2016

Sunday, February 21, 2016

Tonight's picture was taken in February of 2006. Mattie was three years old and doing another activity he loved... playing with play-doh. If you look carefully, you can see that Mattie's car carrier was transporting the clay! Mattie stuffed clay into his cars as well. I remember those days so well, and I also recall what a nightmare it was picking up bits and pieces of play-doh everywhere. Yet because this was creative play and Mattie enjoyed it so, I dealt with the consequences. After all how could you resist that smile?!



Quote of the day: Being deeply loved by someone gives you strength, while loving someone deeply gives you courage. ~  Lao Tzu



Despite not feeling great, I know I committed to guest lecture at the George Washington University on Tuesday for two hours. I am scheduled to present about childhood cancer and loss. Of course there are SO MANY aspects of loss associated with cancer, for both the child and the family. So keeping this presentation focused and to two hours requires thought. 

When I was asked a few years ago to speak at the University, I was given an hour. This Tuesday, I have been given the full class period, two hours. So it wasn't as if I could take an old presentation and recycle it. I had to update and expand what I did a few years ago. Typically that wouldn't be so much of a problem, but given my state now, doing anything is like climbing a mountain. But today I finished the power point slides and was able to print out handouts. 

Peter and I ran some chores today, but I literally am not myself. I have very little energy, get wiped out easily, and am shaky and light headed. It is the shakiness and light headedness that I find most troubling and it makes me feel unstable. I am happy I have been aggressive this week about getting answers and insights into my symptoms, and I hope to have them next week.