Friday, July 3, 2015

Friday, July 3, 2015

Tonight's picture was taken in June of 2009. This was at Mattie's second party that was held for him in honor of his seventh birthday. Mattie was in the hospital for his actual 7th birthday, but my friend Christine hosted a party for Mattie with many of his friends in her backyard. Christine arranged for Reptiles Alive to come and entertain the children at the party. This was right up Mattie's alley because the company brought all sorts of creatures that intrigued him and absolutely freaked me out. This big snake was case in point! I absolutely despise snakes and yet Mattie couldn't wait to touch it! This became the running joke, so much so that Mattie's buddy, Jocelyn (who unfortunately died from osteosarcoma in April of 2014) gave Mattie a wonderful albino boa constrictor stuff animal as a gift after seeing photos from this party! Mattie named this stuffed animal "Sunshine." Sunshine still sits on Mattie's bed today. Every day when I see Sunshine, I think of Mattie, Jocelyn, and this birthday party. 



Quote of the day: Alone we can do so little; together we can do so much.  ~  Helen Keller


Peter had the day off from work. Or I should I say from his first job. Meanwhile, he devoted the day helping me with his second job, which is the Foundation. We are in the process of redesigning the Foundation's webpage. That is a very large undertaking considering the last time Peter created our webpage was when we incorporated over five years ago. The Foundation has undergone a major transformation since that point, in which we have accomplished a great deal, and unfortunately the platform we used to develop the old webpage was antiquated and just impossible for me to figure out how to maintain and keep current. So our current webpage is not a viable source of information about us, which has been making me frustrated for the past several years. Now we are actively addressing this, but this takes time, attention to detail and patience.

Keller's quote resonated with me tonight because there is no way I can develop this site on my own. I really do need the teamwork and collaborative brain power of working with Peter. We can accomplish much more this way and produce a better product. 

In the midst of working all day today, we received a surprise email from Liza. Liza was one of Mattie's favorite child life volunteers at Georgetown University Hospital. We haven't heard from Liza since Mattie died. So that is almost six years ago! She asked us if we still remembered her?! Which is funny, because Liza has this adorable voice like Glinda the good witch from the Wizard of Oz. She is unforgettable for that and for many other reasons. Liza lives out of state now but she is visiting DC this weekend and wants to see us tomorrow. She is going to medical school and she contributes this in part to her time with Mattie. I look forward to reconnecting with her. Mattie touched many people's lives and transformed them, and in turn they decided to become medical professionals. I think that is a very meaningful thing for a mom to hear and I look forward to learning more tomorrow. That is a fourth of July surprise I wasn't expecting. 

Thursday, July 2, 2015

Thursday, July 2, 2015

Tonight's picture was taken in June of 2009. Mattie was in the physical therapy clinic of Georgetown University Hospital and on either side of him were Anna (physical therapist) and Linda (child life specialist). Anna understood that therapy for Mattie had to be very hands on and engaging, otherwise Mattie would tune out and wouldn't participate. It was particularly important that Anna engage Mattie in order to keep his body moving and to maintain some sort of muscle strength, which wasn't easy given how weak and debilitated he was from treatment. 


Quote of the day: Let’s move past the stigma. Though in the past it may have been taboo to talk about a child who died, let’s move on. Let’s move on for the children, who deserve to be remembered. And let’s move on for the parents, who deserve a chance to tell their story. ~ Lexi Behrndt


I recently joined Facebook as a personal user. I of course was a Facebook user before for the Foundation but never had a personal account. I established a personal account not necessarily by choice, but I decided to do this because of Facebook's decision to close down our Foundation's profile page. Now that I am on Facebook, I find it rather ironic, that just like in my actual life, in my electronic life there are two populations that I mingle with.... friends who lead regular lives with their children and those friends who have been touched by cancer. I am amazed in a way how Facebook has become a rather electronic support group that people can reach out to folks all over the place on all sorts of issues. Though of course to me it is a very impersonal and public sort of support. I can see that Facebook can instantly help get your message out there and with that you can see that you aren't alone, which is greatly helpful, but on the other hand it is very hard to know who you are really talking to and to develop meaningful connections (once you start chatting with people who are friends of friends of friends). So I do not know where I am at or what my opinion is with Facebook, other than I have seen many, many postings this week from childhood cancer families and read about the pain of these children's treatment and those who are dying. This compounds the ones I already know about. It is a lot to absorb!

My friend Annie, sent Peter and I this article entitled, Why we should talk about our children who have passed. I included the link below. I found it very meaningful because it was written by a mom who lost a child, who has website called Scribbles and Crumbs in which she write articles devoted to the loss of a child, and basically the simple fact that she is dispelling society's myth that there is a set time frame that one grieves and then must move on to be considered psychologically well, healthy, and balanced. Quite on the contrary, being able to live with the memory of one's child, to talk about one's child openly, and to reflect on one's loss with others is healthy. Being asked to bottle up the reality is what produces the dysfunction, anger, and disenfranchised  feeling within society.  

As I wrote to one mom today who lost her child six months ago.... it is not about moving on, it is about finding a way to move forward each day while keeping the memory of your child alive. 

http://www.scribblesandcrumbs.com/2015/02/11/why-we-should-talk-about-our-children-who-have-passed/

Wednesday, July 1, 2015

Wednesday, July 1, 2015

Tonight's picture was taken in June of 2009, around the time Mattie had his sternotomy. I remember taking this photo for several reasons. First of which it was hard to imagine that Mattie just had his entire chest cavity cracked open and yet here he was smiling and engaging with us. Mattie's body was cut and scarred in every which direction to try to remove cancer from his bones. That alone was very unsettling to accept.... to see a child physically battered in this way. There is no nice way of saying it. However, on the tray next to Mattie, you can see this little toy robot with a red head. This is not a toy any of us gave him. This was a toy his surgeon gave him. Dr. Chahine left a memorable impression on me. Not only from surgery day, but the days preparing for the surgery and post-op. Dr. Chahine is the doctor who came to visit Mattie every day. He did not send one of his residents. This made a big difference to me and having children of his own, I feel this gave him insights into what this must have all been like for Mattie. Mattie loved the toy (particularly anything mechanical) so this helped to bridge the gap between doctor and patient. 


Quote of the day: Some days, 24 hours is too much to stay put in, so I take the day hour by hour, moment by moment. I break the task, the challenge, the fear into small, bite-size pieces. I can handle a piece of fear, depression, anger, pain, sadness, loneliness, illness. I actually put my hands up to my face, one next to each eye, like blinders on a horse.

~ Regina Brett

I can't believe it is July 1st! To me it still feels like we are back in May. Literally it takes me a month to process the Walk, put things away, and deal with all administrative tasks from the event. I sometimes wonder why in June I am so worn out, but then when I examine what the Foundation accomplished this year alone it explains a lot. On top of all the work, I then planned our largest fundraiser for the year, the Walk. Planning the walk required me to burn the candle from both ends and some days I was working 14 or more hours. Not just five days a week, but seven. That may only partially explain why each summer I become chronically ill. I do believe the other part of it is also timed with the notion of what summer represents and the simple fact that Mattie was diagnosed on July 23rd. A day that will remain with me always. Summer will never be that fun loving season it once represented.  

Tuesday, June 30, 2015

Tuesday, June 30, 2015 -- Mattie died 303 weeks ago today.

Tonight's picture was taken in June of 2009. I thought I lost this photo, but I just downloaded it off the blog! I think this photo was adorable! Mattie was multitasking and on either side of him was a HEM/ONC nurse. On the left is Sarah Marshall (his day time nurse) and on the right is Ellen (his night time nurse). The love of a nurse! It says it all!!!



Quote of the day: Those who make compassion an essential part of their lives find the joy of life. Kindness deepens the spirit and produces rewards that cannot be completely explained in words. It is an experience more powerful than words. To become acquainted with kindness one must be prepared to learn new things and feel new feelings. Kindness is more than a philosophy of the mind. It is a philosophy of the spirit. ~ Robert J. Furey 

Back in May of 2010, for our first Foundation Walk, we received in the mail a case of Pork Barrel BBQ sauce. This gift in kind was sent to be used for our Foundation raffle. After our event was over, I acknowledged our donor with a note, never realizing who exactly the donor was in terms of his profession! I just assumed he was into BBQ sauce! 

Months later, the donor of the case of BBQ sauce contacted me to let me know that he wanted to meet with us. He elaborated on the fact that he found out about our story through a Del Ray, VA business association list serv posting which was advertising our Walk. This posting inspired him to send the case of sauce. However, in the mean time he started reading through our blog and was eager to meet with us. In all reality, I thought he most likely wanted to give us more sauce or plan a BBQ fundraiser. I had no idea when we met with him what was going to transpire and what has transpired now five years later. Why?

You see..... the co-founder of Pork Barrel BBQ Sauce, the man we met with that day, is Brett Thompson! By day Brett's expertise is in lobbying, creative strategy, and communication. When Brett was a lobbyist on Capitol Hill, he and his friend Heath (another fellow lobbyist) brainstormed that they wanted to create a great BBQ sauce because when they worked late nights on the Hill for their bosses they apparently had a hankering for BBQ. So their sauces and their company arose out of their work on the Hill. Not to mention the catchy name "pork barrel," reminds you of pork barrel spending, no?!

This is all an aside.... when we met with Brett in 2010 at a Starbucks, instead of talking BBQ sauce, Brett immediately started telling us that he really admired Peter and I, believed in our Foundation's mission and wanted to help support our legislative agenda, which was psychosocial care and wanted to sign us up in his lobbying firm as a pro-bono client.

Can you imagine how stunned Peter and I were??!!! That was in 2010! It is five years later, and guess what?! Brett is still working with us. I refer to Brett as my number one cheerleader. Brett is now a member of our Mattie Miracle board, because we realize how invaluable Brett is and how invested he is to us and our vision. 

In 2012, another childhood cancer organization asked Mattie Miracle to fund a conference they wanted to sponsor. This was something I truly would have considered except the proposal really did not match up with our mission. When this opportunity fell through, I told Brett about this and he convinced me that I did not need any other organization. Instead, he felt that Mattie Miracle could plan its own conference right here on Capitol Hill. It was a bold move, which required us to take a chance. But Brett gave me the courage to take this chance. Without Brett, we wouldn't have done the symposium on Capitol Hill, and without that symposium we would never have pulled together our core team of researchers and without them there would be NO STANDARD of psychosocial care. So really ONE person believing in you can make a difference. 

Brett introduced us to George, who is a partner at Banner Public Affairs and runs their Communications and media relations practice. George met with Peter and me today at Pork Barrel BBQ Restaurant in Del Ray, VA. Seemed like a symbolic restaurant to meet at, given that this BBQ sauce is what brought us together with Brett in 2010. George wanted to introduce us to a Washington Post reporter who is interested in potentially doing a story about the Foundation. So we met over lunch with the reporter and talked for two hours and shared our story.  

These are all the BBQ Awards that Pork Barrel BBQ Sauce has won over the years. Their most recent win was this past weekend, at the Safeway BBQ Battle in which Pork Barrel won for Best Beef. 


Whenever Peter and I share our story with someone new, I admit I greet this opportunity with some trepidation. Because I never know whether I will get my point across, if I will do Mattie justice, and if my memories can really bring Mattie to life again for someone who did not know him. This is a tall order to deliver upon. However, the reporter was absolutely delightful. Truly human and we related to each other immediately. Which made it super easy to want to share our journey, she wanted to hear about Mattie and our experiences, and honestly wanted to help and make a difference. A true gift, and meeting people like this makes you feel like there is hope for our world.  

Monday, June 29, 2015

Monday, June 29, 2015

Tonight's picture was taken on June 15, 2009. Mattie was in the pre-op area getting ready for his sternotomy. By this point, this pre-op area was getting to be an old routine for us, since Mattie had already had two major surgeries before this one. In order to lighten the mood, Peter wrote a sign on Mattie's hospital gown. The sign was meant for Mattie's surgeon, Dr. Chahine. The sign read.... "Dr. Chahine.... give us a Mattie Miracle!!!!" Meaning, we were asking Dr. Chahine to remove all of Mattie's lung tumors that day. 


Quote of the day: There is no illness that is not exacerbated by stress. ~ Allan Lokos


Over the course of the weekend, I felt as if I was passing a kidney stone. So my urologist advised me to get an X-ray today to confirm what was going on and to see if I had other stones. That meant that I had to contact my other doctors to request the scan. The beauty of healthcare in many ways is you have to constantly advocate for yourself and at times be your own physician. Though I like my nephrologist, I know that his office is dysfunctional and the likelihood that I would get a hold of him today and get the scan completed with results would be low. So instead, I contacted my internist, who I have seen for years. 

However in order to get access to my doctor, I had to work through her gatekeepers. I left a message with her nurse at 6:30am. However, by 10am, the nurse hadn't called me back, and I wasn't planning on waiting any longer. So I called the office back and dealt with the receptionist. I feel for her, because she really did not know what hit her. She wanted to put me in a voice mail, and I told her absolutely not, that I needed to talk to a live person and I needed my issue dealt with today. I gave her the history of my problem and she tried to tell me that my urologist needed to order the X-ray for me. When I told her that my urologist doesn't handle kidney stones, she started arguing with me. Not a good plan, because I let her have it, until we had a meeting of the minds. 

Finally we got on the same page, and she got a hold of my doctor, got the scan ordered for me, and even arranged for my doctor to call me in the hospital with the results. So clearly my level of agitation came across in spades. When you go through five days of pain, with no one really helping you manage the pain.... edgy seems like a very natural by product in my book. Now with the July 4th holiday coming up, I wanted answers!!! 

With all that said, being in hospitals put me on a heightened sense of alert. They make me anxious and after my scan was done today they put me in a holding room, until my doctor called me with the results. This is the same type of holding room with a phone that I was in when I received Mattie's scan results at Virginia Hospital Center on July 23, 2008. It was just too eerie today, and sitting in that room made me tense. Almost like a caged rat until the phone rang and I got to talk to my doctor who confirmed, another stone. 

This evening, Peter and I went for a walk after dinner around the Washington Mall. If you look closely you can see Mattie Moon to the right of the Monument.

The sun setting and its beautiful rays!

This was "Mattie's Fountain," as I call it, because Mattie loved how the water would shoot out of it almost like a cannon. 

Sunday, June 28, 2015

Sunday, June 28, 2015

Tonight's picture was taken in June of 2009. Mattie was visiting with our friends Tanja and Katharina who had this adorable bird named Pip. Pip took a liking to Mattie and Mattie wasn't sure what to make out of this experience because it was a strange sensation to have a bird fly onto you and walk on your shoulder. Yet Mattie was intrigued and welcomed Pip, because at the heart of it all, Mattie loved animals. 

Quote of the day: I only went out for a walk and finally concluded to stay out till sundown, for going out, I found, was really going in. ~ John Muir


Peter and I did a lot of Foundation work together today and I continue to lie low as I haven't been feeling well. But as the afternoon rolled around, we were both getting stir crazy, so we decided to go out for a walk. Our short walk, landed up being over an hour.

We walked down by the Potomac River and saw that the flood gates were up at Washington Harbor. This isn't a site I am accustomed to seeing, but with all the non-stop and torrential rains we have been having, the River is rising and this does threaten businesses and restaurants at the Harbor. The Harbor learned a painful lesson years ago from flooding, because these gates were not raised and businesses in many cases were significantly damaged and shut down for years. 

The Black Eyed Susans are just glorious and are in full bloom. They are one of my favorites. They come back year after year and are just hearty and vibrant! Which after the winter we had, is remarkable. 

A close up of them! They remind me of sunflowers, which is probably why I like them so much. 

The magnolia trees are all in bloom as well. I really never paid attention to their fragrance before, but when so many of them are in bloom and their fragrance wafts through the air, it is quite intoxicating. Not to mention that the flower itself is stunning. 

There is something to be said about the meaning behind John Muir's quote. For going out for a walk, is not just about the physical exercise associated with the act. There is MUCH MORE associated with walking. Walking brings you in touch with yourself and makes you feel better connected to nature and the world all around you.