Saturday, March 12, 2016

Saturday, March 12, 2016

Tonight's picture was taken on August 9, 2008. This was during Mattie's first week of hospitalization and chemotherapy. We really did not know if we were coming or going back then. As we were trying to adjust to our VERY foreign, chaotic, and loud surroundings. Sounds that went on 24 hours a day and in a room that was the size of a postage stamp. The accommodations  themselves were grueling (with sharing showers with other families, no storage, not being able to sleep, and constant people coming in and out of the room at all hours of the day and night), but then we were worried about Mattie's prognosis. In this photo you will see an art set up that Mattie's child life specialist (Linda) created in the hospital hallway for Mattie. She knew that Mattie's good buddy Charlotte was coming to visit, and Linda wanted them to be able to do an activity together that would help Charlotte transition to the hospital. 


Quote of the day: Many persons have a wrong idea of what constitutes true happiness. It is not attained through self-gratification but through fidelity to a worthy purpose. ~ Helen Keller



Peter and I spent all day working on Foundation websites. Both the website for the Walk and our actual Foundation website. By 5pm, we were both WORN out! So this is the full extent of tonight's posting. It is my hope that the investment we are making in this year's Walk website can sustain us for many walk events to come, rather than having to create a new site each year. 

Friday, March 11, 2016

Friday, March 11, 2016

Tonight's picture was taken in March of 2004. Classic Mattie!! He put on Peter's baseball hat and of course never went anywhere without his trusty sippy cup! That cup was always filled with milk...... Mattie's drink of choice! I literally always had a bag attached to me filled with sippy cups and an ice pack.... that was how much milk was appreciated!


Quote of the day: My father used to say, 'You can spend a lot of time making money. The tough time comes when you have to give it away properly.' How to give something back, that’s the tough part in life. ~ Lee Iacocca


Last week, Patrick Terpstra (senior Washington news producer at Cox-owned TV and radio stations) contacted Peter. Patrick had read Peter's statement in the Washington Post (September 8, 2015) and wanted to talk with him further about the controversy before Congress. The issue in question is the FDA's decision to approve opioids like OxyContin for children under 11 years of age. 

Congress is evaluating this decision about providing access to children to such addictive pain medications. Certainly the issue is very controversial, since drug addiction to pain medications is very real in our Country, and many parents have lost their children to such prescription medications. We can appreciate that problem and epidemic. But clearly there are two very passionate camps about opioids for children...... those opposed to it and those who see a need for it. A valid need, particularly for children contenting with life threatening illnesses like cancer. In fact, the FDA says..... its recent approval for 11- to 16-year-olds wasn’t intended to expand the use opioids in children but, rather, to give doctors better guidelines about how to use OxyContin safely in pediatric patients. Doctors can already prescribe medications any way they see fit, and many physicians have long given OxyContin and other potent painkillers “off label” to children suffering from cancer, major surgeries or other trauma, the agency said.

Studies evaluating the safety and effectiveness of OxyContin in pediatric patients have been performed and FDA officials said the results supported the use of the drug in limited situations — such as when intractable pain couldn’t be treated effectively with less powerful painkillers. The FDA guidelines are in essence evidence-based medicine for children because they provide physicians with data for pain medication administration. 

Peter voices our position on having access to pain management drugs for children with cancer!!! We believe that access to pain medications for children with cancer is imperative and is absolutely crucial for end of life management and care.

Parents of children with cancer trust their doctors' judgment on what medications are needed to manage symptoms, are aware of cues from their children regarding reported and observed pain, and know that having an arsenal of drugs to choose from to assist a child in need is vital. Not every drug works for every child, and sometimes you have to find the right pain medications to manage the symptoms humanly. Therefore limiting access to pain medications to children with cancer is a quality of life issue for the entire family system. Below you will find the interview as well as the December 2015 article in the Washington Post.

Father Fights to Protect Children From Pain:

http://www.fox23.com/news/video-father-fights-to-protect-children-from-pain_20160307173652/149562276

Why the FDA approved Oxycontin for kids as young as 11:

https://www.washingtonpost.com/national/health-science/fda-defends-controversial-decision-to-approve-oxycontin-for-children/2015/09/07/3df2f538-5259-11e5-8c19-0b6825aa4a3a_story.html

Thursday, March 10, 2016

Thursday, March 10, 2016

Tonight's picture was taken in March of 2004. Mattie loved umbrellas and all gadgets really. So Peter took his huge work umbrella and opened it up on Mattie's play mat. As you can see, it was a peek a boo moment. You can clearly see Mattie and behind him was Peter. 




Quote of the day: God cannot be everywhere; that's why he had created Philanthropists (Volunteers and Donors). ~ Sabiha Hasan



I learned that two teachers (who I did not know) died this week at Mattie's school. The school as a community is besides itself. Some students are unable to go to school, concentrate, and of course the realization is that death can happen to young people and without warning in some cases. While I was out and about today, I had the opportunity to meet one of the chaplains in the middle school. If Mattie were alive, he would have had Mattie as a student. Typically I do not relate to chaplains and preachers of any kind anymore. Because as soon as you start talking about God's will, I want to lose it. But this man wasn't that way at all, said nothing trite, and was clearly shell shocked like the rest of his school. He learned about Mattie and my loss. He did not dismiss me when I said Mattie died six years ago. Instead, he listened and tried to capture insights from me on how to help those in his community. Of course grief is quite unique to each of us. He mentioned that he is having people send messages and stay in touch with the wives of these two men who died. My advice was to educate others that contacting a bereaved person does not add to the grief. That person is already suffering. It is not reaching out that hurts and dealing with grief in isolation is terrible and compounds the grief. I also mentioned that consistent and long term connections to these wives are important. It shouldn't just stop after the first week or month. 

Along my journey, I went to the post office, where our Foundation's mailbox is located. While mailing something, I saw Darryl, our postal employee extraordinaire! I watched Darryl talking to the customer next to me and he told her about Mattie Miracle and handed her one of our brochures. He then mentioned that the co-founder of the Foundation was standing right next to her. Needless to say, when she was leaving the post office, she came up to me to thank me for the work that I do. By training she was a social worker and understood immediately the importance of what we advocate for! She also said that she remembers Mattie and Peter. That caught me off guard. Apparently she worked in a local bicycle store and recalls Mattie and Peter visiting the store. I was VERY impressed with her memory!

It gives us great hope to see the bulbs in Mattie's memorial garden all a bloom this week. Perhaps spring has finally come to DC!

Wednesday, March 9, 2016

Wednesday, March 9, 2016

Tonight's picture was taken in March of 2005. Mattie was almost three years old! This was another classic Mattie photo. Mattie loved to build bridges and obstacle courses with just about anything. So he took his chairs, turned them over and inside this arrangement he started parking his toy cars. But what gets me about this photo was Mattie's expression. To me Mattie's expression was saying.... I'm too busy to pose for a photo, but I will at least give you a smile.  If you asked Peter, he would say it was because he took the photo and not me. Peter always joked with me that Mattie smiled differently and looked directly at me if I was the photographer. I don't know, but when Peter says that it always makes me smile. 


Quote of the day: We can all make a difference in the lives of others in need, because it is the most simple of gestures that make the most significant of differences. ~ Miya Yamanouchi

The collection for the April Item Drive has begun. I spent several hours sorting the items that were donated to us by the Arlington Aerials Gymnastics Team. 

Five years ago, we started this tradition. I wanted to find a way to acknowledge Mattie's April 4th birthday. It is hard to know what to do when you lose your child. It isn't like people are going to celebrate with us or come to a birthday party. In fact as time goes by, it is rare for those around us to even talk about Mattie and where he would be today if he were alive. So instead, I knew if Mattie's birthday and life were going to be acknowledged there would have to be an event that people could contribute to. Not just contribute.... but to help others living with childhood cancer. 

Which is why the free snack and item cart that we sponsor at MedStar Georgetown University Hospital stocks more than just candy and nutritional snacks. It also holds toiletry items and keurig cups filled with coffee (a highly sought after item when living in a hospital caring for a child). When parents race to the hospital in an emergency with their child, many times toiletries are forgotten at home. Which is why having access to such items is considered a true gift. We are grateful to our supporters for making our item drive a success each year. Another tradition I have is I always take a photo of Mattie with all the items accumulated in his memory. 

Tuesday, March 8, 2016

Tuesday, March 8, 2016 -- Mattie died 338 weeks ago today.

Tonight's picture was taken in April of 2005. This was a classic Mattie photo! It captured all the activity around him and us. Mattie LOVED trains and designing train tracks. He would inter-mix train sets together -- electrical with his wooden Thomas trains. But also notice his battery powered car parked under our dining room break front. We were always surrounded by vehicles and things with wheels! Not to mention Mattie's sippy cup of milk. Our running joke was Mattie was going to have the strongest bones around from the amount of milk he drank. It did not work out that way..... since he developed bone cancer.  



Quote of the day: Memory breeds in me strange loneliness. ~ William Herbert Carruth

After a long day today, I sat down at the computer to put a blog together. Yet as I was writing, I decided to open the window to let in the spring like breezes. As I did this, I could hear something VERY familiar to me in our commons area. What was it? A child playing with a remote controlled car. I remember those days SO WELL! Mattie loved all his remote controlled vehicles. He got his first one as a birthday present literally when he was one year old! A friend of mine gave him this gift and I honestly thought Mattie was too young for it. Yet, guess what? Mattie gravitated to it like a duck to water. He played with it for years until it stopped working and then got his next remote control car. 

Tonight as I could hear that sound through my window, it just brought me back in time. Mattie even had remote controlled cars in the hospital. They would go zooming up and down the hallways and in the late hours, because Mattie rarely slept, he would put rubber bugs on a car and send it to visit his nurses (at the nurses station). They were all good sports about it, and typically would then come visit Mattie in his room to socialize. In the beginning of treatment Mattie loved to socialize, but as the impact of treatment wore down on him, Mattie always opted for isolation. Amazing how a slight sound outside tonight could capture my attention and transport me back in years. 

Monday, March 7, 2016

Monday, March 7, 2016

Tonight's picture was taken on March 9, 2005.  I decided to capture this moment because Mattie was RARELY sitting still or lying down! He only did this at bedtime or if he was ill. Otherwise, in the day light hours Mattie was FULLY ON, engaged, and looking for stimulation and activities. It may seem odd to others that I took a photo of a sleeping child, but this moment of down time was noteworthy and even back (even pre-cancer) then I had the where with all of the importance of snapping photos that captured the essence of Mattie!

Quote of the day: If you find it in your heart to care for someone else, you will have succeeded. ~ Maya Angelou

Today I had my first session of physical therapy. I debated for a while where to go for this treatment but in the end I decided on a place walking distance from my home. I had researched this center and my neurologist also recommended it. What I like about this center is all the therapists have a doctorate in physical therapy and I liked the comments patients left about their experiences working with these therapists. 

When I met with Autumn (the therapist), she was very personable and did a thorough oral and then physical evaluation of all my issues. Though I did not go into therapy to work on my pelvis, I learned today that it is misaligned. She looked at the length of my legs and apparently my left one was slightly shorter than my right. I learned that your pelvis is made up of several bones that are fused together.  There is a group on the left side and a group on the right side.  They come together in the middle and there is cartilage in the very front joining them together. On each side, there is a grouping of bones, called an innominate.  Innominates can move.  When this happens, you are considered “out of alignment.” 

So literally she had me lying on my back, I bent my knees and had both of my feet lying flat on the table.  Autumn then put her hands on either side of my knees and asked me to push my knees into her hands as hard as I could. When I did this, I literally felt something pop! The pop was my pelvis going back into alignment. It was a truly an odd feeling.   

Needless to say, I have two months of therapy ahead of me. Which means going twice a week and in between doing home exercises. We shall see what this accomplishes for my many symptoms.

Sunday, March 6, 2016

Sunday, March 6, 2016

Tonight's picture was taken in March of 2004. In a way it is a follow up photo from the one I posted last night. In both cases, the photo was taken at the Children's Museum in DC. It was a room with a vehicle theme, which was right up Mattie's alley. Right from day one, Mattie was fascinated by cars, trains, buses, trucks, and planes. Mattie could watch these things go by all day long. So actually standing on the back of a fire truck was intriguing to Mattie. 


Quote of the day: Many persons have a wrong idea of what constitutes true happiness. It is not attained through self-gratification but through fidelity to a worthy purpose. ~ Helen Keller


I woke up this morning and distinctly remembered my dream. It was so real and awful that it would have been hard to forget. I rarely remember my dreams at all! But in this one Mattie was alive and was sitting in my lap so I could talk with him. However, it wasn't an easy conversation we were having. Instead it was the reality that Mattie was dying and I was the one appointed to tell Mattie this news and to explain to him what dying meant. The subject matter of the dream was disturbing, but it was also a very vivid dream in the sense that it seemed like Mattie was in the room with me. I can still picture his big brown eyes staring at me from my dreamy state. When I woke up I was disoriented as to what had just happened and questioned what the dream meant. 

Peter and I were glued once again to the computer, as we are re-designing the Walk website. Which is another big undertaking. At one point in the day we took a break to go out. When Peter was going through his clothes in the closet in preparation for getting dressed, he came across dry cleaned shirts with the plastic over them. Attached to the plastic was this receipt. I took a photo of it because the date on the receipt is April 30, 2008. 

Peter and I both realized that these clothes were dry cleaned three months before Mattie was diagnosed with cancer. The dry cleaning receipt made us pause. It actually was disorienting because who ON EARTH would guess that a dry cleaning receipt and the clothes that went with it would survive LONGER than Mattie??? We would never have imagine such a thing was possible, but it reminded us once again how life can change from one minute to the next, and we honestly have no idea or control over the future.