Saturday, October 3, 2015

Saturday, October 3, 2015

Tonight's picture was sent to us by our Facebook friend, Tim Beck. Tim surprised us by creating this pumpkin composition for us. Tim found this photo of Mattie painting a pumpkin and transposed it on a larger pumpkin. The photo of Mattie painting a pumpkin was taken at the hospital in October of 2008. I can remember that day perfectly, as Mattie was just admitted to the hospital and as he was getting hydrated to start chemotherapy, he went to the child life playroom for this activity. Mattie LOVED pumpkins and also eating anything pumpkin related! As I told Tim, this was a lovely surprise on such a grey and dreary day!


Quote of the day: What is important is to spread confusion, not eliminate it. ~  Salvador Dalí

I love and can appreciate Dali's quote as it applies to art. Because as we know his art was intriguing and highly confusing! But what happens when things around us, in our actual world, makes NO SENSE? It can produce confusion and in some cases, confusion isn't always good. The only positive to confusion is it gets us talking about it and trying to understand it so that we can resolve the problem/issue quickly. 


I went onto Facebook this morning and a fellow clinician had posted a story about this woman who has Body Integrity Identity Disorder (BIID). I have to admit I never heard of this disorder before today, but now that I know about it, I am deeply confused.  

Currently BIID is not included in the International Statistical Classification of Diseases 11 or the Diagnostic and Statistical Manual of Mental Disorders IV (though it is defined now in the DSM-V). As such this disorder is often not known to surgeons, neurologist and psychiatrists. To exasperate this issue, BIID individuals typically avoid healthcare and often act out their desires by pretending they are disabled or perform actual self-amputation (Psychological Medicine, 2005).

Body Integrity Identity Disorder (BIID) is a rare, infrequently studied and highly secretive condition in which there is a mismatch between the mental body image and the physical body. Subjects suffering from BIID have an intense desire to become disabled, for example by desiring an amputation of a major limb or sever the spinal cord in order to become paralyzed. Or as the article (below) which I received today illustrates, the desire to be BLIND. 

Typically I am very open to understanding the plight of mental illness as well as understanding both sides of the coin. But in this case, I am absolutely confused because after seeing Mattie suffer with limb salvaging surgeries which he did not ELECT to have, I can't imagine that someone with healthy limbs would want to have a leg removed. Or with healthy and functioning eyes, to want to be blind. 

In the case presented below, this woman felt that she was meant to be born blind, but unfortunately for her was born with perfect vision. She became obsessed with the desire to become blind and sought the help of a psychologist, who after working with her to two weeks agreed to assist her achieve her desire. The psychologist poured bleach into this woman's eyes. 

All I know is I am happy I am not presiding over the ethical hearing of this mental health provider. Because clearly his license will be in jeopardy and his competence to practice will be coming into question. As you read the second article I posted below, there have been several studies which indicate that psychotherapy is not helpful for such patients with BIID, and in many cases, these patients resort to disfiguring their own bodies if assistance isn't offered to them. 

I wonder as you read this story and watch the video embedded in that link, if you will be just as confused as I am? Her friend commends her decision to put bleach in her eyes and go blind. He says that she "is an inspiration to the blind community." All I can say is wow! I would love to check in with those who are blind (due to illness or genetics) and determine their reaction. 


I Poured Drain Cleaner in my eyes to blind myself:
http://nypost.com/2015/10/01/i-blinded-myself-on-purpose-and-have-never-been-happier/


Amputees by choice:
http://www.philosophy.ox.ac.uk/__data/assets/pdf_file/0016/1087/amputees.pdf

Friday, October 2, 2015

Friday, October 2, 2015

Tonight's picture was taken on October 10, 2008. Since Mattie was on a transporting gurney/bed, I know that meant he was headed to a procedure and we were waiting for Debbi (his sedation nurse angel) to show up to take us. In the mean time, Mattie was with me and Linda (his child life specialist). I know Linda was with us for two reasons, first was Mattie had a new activity book that he was working on and the second was Linda came with us on EVERY procedure. After the first couple of scans that we did without her, which did not go well, Linda then accompanied us for every subsequent one. Which not only helped Mattie, but I found it of great support to me. It took two of us at times to help Mattie cope and on top of that we had radiology techs that usually needed to be put in their place! When I look at the date this photo was taken, it is hard to believe that a year later on this same date we held Mattie's memorial service.   



Quote of the day: Kindness is a language which the deaf can hear and the blind can see. ~ Mark Twain


I spent the day, or six hours of it, at my car dealership. I happen to be attached to my car, since I got this car a month before I gave birth to Mattie. I selected this particular car because of its safety features back in 2002. But as one can imagine a 13 year old car, doesn't hold up as well as a typical 13 year old person. 

My service representative that I always have worked with over the years, left the company. So when I initially called to book a service visit they assigned me to work with someone who I would deem as obnoxious. He was so awful that we both landed up becoming hostile with each other on phone. As a result he wouldn't book a time for me to get the car serviced. He infuriated me to no end, that I called the dealership back and spoke to his boss and reported his rude and insulting behavior. I also mentioned that he needed to train his service representatives to deal more effectively with woman. I have to say after what I experienced today (in which my service person even printed out photos to explain what was wrong with the car), my message was translated down to his employees. 

When I got to the service counter today, all the representatives were wearing pink. In honor of breast cancer awareness month. I made a mental note of that. What you as a reader may not be aware of is that the childhood cancer community has real issues with pink. For some advocates it sends them right over the edge, because breast cancer gets a lot of attention and public awareness, and childhood cancer has to really work at it to get anything to turn GOLD. I have mixed feelings about this debate, because I know several people with a breast cancer diagnosis and I believe all people with cancer need access to cutting edge research and support. Needless to say, I got the contact information for the general manager, because you know I will ask him to consider having his employees wear GOLD in September! 

My car had some major issues today, which is why I was there for six hours. But over the course of the day, I had many interactions with Mike, my service representative. I learned that my car has all the same parts inside of it as an Audi, and in all reality though the label is different, I have for all intensive purposes a luxury car. He made me laugh! But we quickly bonded when I started talking to him about his pink shirt! The pink shirt lead us to a discussion on illness, and he revealed to me that his son was just born with a rare genetic disease. He went into how this has/will impact his son's life and how he and his wife have been almost in crisis mode since his son was born. I listened and chatted with him literally for 30 minutes. I then told him that I understood his fears, his runs to the hospital, and the paranoia he feels regarding every symptom his son has because my son had cancer and died. We chatted about this too and then he asked me..... are you the candy lady? The lady who collects post-Halloween candy and gives it to hospitals? Yep that is me, the candy lady! Apparently this fact about me was known throughout the service representatives and I credit my former service representative for spreading the message. I loved Sharon (my former service representative). Her dad was struggling with cancer, and we talked about that often too. 

So what I continually know all too well is if you scratch the surface with people, you find out all sorts of information. Sure Mike may have been helping me with my car, but this was clearly a dad who needed to talk and to be heard. Seeing what Peter goes through, I know it is important that men have the opportunity to be heard and to express their fears, sadness, and worries when it comes to dealing with a sick child. 

Thursday, October 1, 2015

Thursday, October 1, 2015

Tonight's picture was taken in October of 2008. This was classic Mattie. He was in the child life playroom and creating! He literally transformed a big piece of paper into an ocean and then began designing fish and other creatures out of model magic clay. You may notice popsicle sticks too, which Mattie decided to include in his composition. These sticks were forming a car bridge over the water. Unfortunately you can't see the finished product, but the bridge was able to support and transport several hotwheel cars across the water. 



Quote of the day: I say to people who care for people who are dying, if you really love that person and want to help them, be with them when their end comes close. Sit with them – you don’t even have to talk. You don’t have to do anything but really be there with them. ~ Elisabeth Kubler-Ross


Today I went to a briefing on Capitol Hill entitled, "The Status of Palliative Care in the United States." There is a myth that is pervasive not only in the public but in our health care system and that is that palliative care is synonymous with end of life care. This isn't the case. Patients can and should receive access to palliative care when managing any healthcare crisis or chronic and long term illness. Palliative care is an added service that you can access within a hospital and the beauty of this service is it doesn't stop when you get discharged from the hospital. This layer of support will be there for you when you are outpatient! Unlike typical medical care which ends on the day of discharge! Palliative care is performed by a health care team, NOT JUST ONE professional. A team of doctors, nurses, social workers, and chaplains, all working on understanding your unique issues and concerns and helping with pain and symptom management, communication issues and problems between the coordination of healthcare providers, and emotional and social support. This team in essence advocates for the patient and gives feedback to the medical team, which can thereby influence and alter the way medical care is provided. 

When Mattie was diagnosed with cancer, Georgetown University Hospital did not have an established pediatric palliative care team to assist us. However, with that said, the pediatric chief of hematology and oncology believed in a team approach when coordinating Mattie's care. So we indeed had physicians, nurses, a social worker and a chaplain assigned to us. However, just because you have the team in place, doesn't mean the team is equipped or trained in palliative needs. In fact I learned today that most palliative care fellowships for physicians exist only because of private philanthropy.  

The briefing was very interesting and informative today, however, it only presented data on palliative care for adults. This troubled me, so I asked a question about this. What I learned is that adult physicians truly do not have a good understanding for pediatric issues or concerns and they weren't up to speed on the data that exists in the pediatric world. I know this because when I got home I emailed our psychosocial research team, who enlightened me. But the bigger question is why advocate for your profession on the Hill, and silo out children? Children need access to these services and when presenting data, I would have hoped to see the full spectrum of patients covered, and this includes CHILDREN! 

In any case, here are some interesting facts presented today....................

The Palliative Care Report Card: https://reportcard.capc.org/ 

In 1998 only 15% of hospitals offered palliative care services, whereas now 67% of hospitals offer this service (to adults!!). The hospitals which tend to provide such care are hospitals which have 300 or more beds, teaching hospitals, and Catholic Church operated hospitals. 

Family experience with Hospitals:

Not enough contact with Physician: 78%

Not enough emotional support: 51%

No information about what to expect: 50%

Not enough help with pain and other  symptoms: 19%

What is palliative care?

Specialized medical care for people with serious illness (doctors, nurses, social workers, chaplains).

Improves quality of life

Provides an added layer of support

Accompanies life-prolonging and curative treatments for as long as patients need it.

What do palliative teams do?

Relieve

–Pain and other symptoms

–Distress- emotional, spiritual, social, practical

–Uncertainty

Communicate

–What to expect

–Treatments that match person and family priorities

Coordinate

–Medical and practical needs across settings

Wednesday, September 30, 2015

Wednesday, September 30, 2015

Tonight's picture was taken on September 24, 2008. Mattie was two months into his cancer treatment and that afternoon I took Mattie back to his preschool to play with his buddy Alex on the playground. It was after school hours and no other children were there. Mattie and Alex went to preschool together, but then went to different elementary schools. Yet they remained connected through kindergarten and beyond. As you can see from this photo, Mattie was having a good time running around and just being a child. 



Quote of the day: I have learned silence from the talkative, toleration from the intolerant, and kindness from the unkind; yet, strange, I am ungrateful to those teachers. ~ Khalil Gilbran


Last night, after I got back home from seeing the Capital Wheel light up in GOLD, all sorts of things started to go wrong. In the grand scheme of things, they aren't huge, but it was like there was one electronic crisis after the other in my home. Peter has been away on travel, so I was home trying to manage and understand the issues at hand. Which isn't my forte. First my desktop computer stopped working, then to add to that we lost all internet connectivity in our home, followed by the fact that the TVs weren't working. It wasn't a pretty picture and the final straw was I was developing a raging fever. Somehow through fever and chills, I managed through the night and today really forced myself to pull it together. Otherwise, lying around not feeling well tends to make me feel worse. 

Earlier this week, I went to the grocery store and while checking out, the clerk began to talk with me about my summer and what I do on the weekends. When I explained to him that what I tend to do is usually work, he looked at me. I of course wasn't getting into what I do with the Foundation, but his response to me was that I need a real break with a lot less stress. I found this particularly enlightening, because here is a person who doesn't know me from Adam, and yet in many ways he was spot on.

One of the highlights of my day today was going to the post office. I realize that may not be the average person's thrill! However, the post office in which Mattie Miracle's PO Box is located is delightful. I literally will cross over the river from DC to come to this post office in Arlington. One of the postal employees, Darryl, has been super supportive of the Foundation's work! He helps me with my mass mailings in December and he looks out for our PO Box. In fact, Darryl even wears a Mattie Miracle awareness pin on his uniform each day, and when it is Walk season, he advertises the event right by his work cubicle. In addition to seeing Darryl today, I also picked up our Foundation's mail. I never know what I will find in our box, but today we received a letter from Wisconsin and a check for $500. FROM A PERSON WE DON'T KNOW. The letter read.... YOU ARE DOING GREAT WORK! It is amazing how five words can transform your mood and I am not sure if this person knows this, but his $500 is greatly appreciated by us, because without our contributors we can't keep doing our work and performing Mattie Miracles. 

Tuesday, September 29, 2015

Tuesday, September 29, 2015 -- Mattie died 316 weeks ago today.

Tonight's picture was taken seven years ago, on September 28, 2008. It is hard to believe that seven years ago Mattie was in our lives and we were battling cancer beside him. Seven years sounds like a long time, and yet it really seems like yesterday this was all happening. Mattie was pictured with a laptop that was given to him by Mary, his technology teacher at school. For the entire 14 months Mattie was in the hospital, he had access to this computer. Mattie wasn't big into technology for the most part, but there were times within the hospital that the computer served as a great diversion for Mattie! Mattie would create all sorts of art work on the computer using the paint program and there were many instances that Mattie even recorded his own voice on this computer. Which was a gift that Mary shared with me last year, she was able to download Mattie's song to me off this computer. I have yet to listen to this recording, because it is much harder for me to hear Mattie's voice than to see the photos of him. 



Quote of the day: Remembering tires a person out. this is something they don't teach us. Exercising one's memory is an exhausting activity. It draws our energy and wears down our muscles. ~ Juan Gabriel Vásquez

The Capital Wheel opened in May of 2014, and is considered an iconic attraction in the DC area. It is said that when you ride it, you will feel like you’re sitting on top of the world. As you soar 180 feet above the Potomac River waterfront, you will marvel at the incomparable views. Sights visible include the White House and Capitol, the National Mall, Arlington Cemetery, City of Alexandria, Prince George’s County and the lush park lands throughout the DC-Maryland-Virginia region.

The wheel has an overall height of 180 feet and sits on a 770-foot-long pier extending into the adjacent Potomac River, easily visible to passengers on flights to or from National Airport. The 165-foot diameter wheel carries 42 climate-controlled passenger gondolas, each able to seat eight people, including a VIP gondola that can be rented for weddings or celebrations. The wheel has programmable special-effects lighting as well. 

This summer I wrote to the Capital Wheel's management and asked them whether they would light up the wheel in GOLD lights for childhood cancer month in September. I literally wrote to every management person at National Harbor. However, NO ONE ever responded to me. I figured my request fell on deaf ears, until I saw this announcement on Facebook! 

So tonight, I went to National Harbor with my friends in cancer, Ilona and Attila, to witness the GOLD lights on this Capital Wheel. The ironic part about this is, how my request came about. I know it is hard to get federal buildings or anything associated with the government to turn GOLD in September. I then began wracking my brain to figure out what would be a non-governmental icon in the DC area that I could make a light in GOLD request. It did not hit me until one day while on a airplane, flying home to DC, we literally flew OVER National Harbor (the home of the Capital Wheel). It was at that moment, that I knew the Capital Wheel would be the perfect landmark to start the GOLD campaign in DC. 

A beautiful tribute in GOLD!

Though it was pouring, we took several photos of the wheel in its GOLD glory! Because of the rain and the winds, the wheel wasn't operational!

This sight made two moms (I am standing next to my friend Ilona) who lost their only children very pleased. It is hard to get anything in DC to turn GOLD, but National Harbor honored our community's desire to bring awareness to childhood cancer. 

Monday, September 28, 2015

Monday, September 28, 2015

I posted a video of Mattie tonight instead of a picture! This video was taken in September of 2008. Mattie was two months into his chemotherapy treatment, and hadn't undergone any of his surgeries yet. Mattie loved music and I was videotaping him as he was sitting by the piano and composing his own piece. He knew I was behind him but he did not realize I was capturing his music on my phone. Toward the end of his composition, you will see that he turns around to look at me because our land line phone was ringing and he most likely wanted to know why I wasn't answering it! So while playing he let out with the pronouncement... "the phone is ringing!"


Quote of the day: You don't get over it, you just get through it. You don't get by it, because you cant get around it. It doesn't get better, it just gets different. Everyday grief puts on a new face. ~ Wendy Feireisen

Yesterday afternoon, my friend Mary sent me this photo of her in front of Mattie's memorial tree with her daughters Abby and Emily. Mary and I were fellow moms at Mattie's preschool and her girls attended the school while Mattie was there. I have to say that I am NOT USED to other people visiting Mattie's tree and also receiving a photo of this special moment. Nonetheless, it meant a lot to Peter and me, when we saw this on Facebook! It is important for the next generation to remember Mattie and to keep his memory alive..... by visiting the tree, this helps to accomplish just that. 

We had the celestial trifecta last night! A full moon, a perigee (moon is closest to the earth) and a lunar eclipse! Next this will occur is in 2033. Mattie Moon was in his glory last night! Peter was outside taking photos and our neighbor with a telescope was outside in our commons area having a stargazers party with fellow neighbors!

Spectacular views of the 'Blood Moon,' (which takes its name from the reddish hue the moon takes as Earth's shadow passes over it) were seen by some last night! Not us in DC because of cloud cover, but this photo was sent to me by my cousin Maria who lives in Connecticut. 

The intense clouds last night, and yet the moon shone brightly through it!

Peter captured part of the Lunar Eclipse! If Mattie were with us, he would have really LOVED this site. Since the last time such a trifecta occurred was in 1982, before Mattie was born! 

Sunday, September 27, 2015

Sunday, September 27, 2015


Tonight's picture was taken in September of 2008. Mattie was in his second month of chemotherapy and clearly he was in between treatments since he was home. Time at home never lasted long, since the chemotherapy would compromise Mattie's immunity so much that he would get raging fevers and neutropenia and therefore would have to be rushed back for a hospital admission. As you can see, we had a family cat named Patches. In the beginning we tried to find a way to care for her while managing Mattie's treatment. However, we realized soon enough that we had to board Patches at our vet. Patches had her own medical issues that required that she be given medication two times a day. It was hard to board Patches at the vet for over a year, but we knew they loved her, would allow her out of her cage, and would monitor her health and medication. Mattie and Patches had an understanding with each other. Patches knew something wasn't right with Mattie and would stick close to him and even sit on his bed to keep him company. The first year after Mattie died, it wasn't only Peter and I who were out of sorts and traumatized, so was Patches. She spent a lot of time in Mattie's room, close to his things, and if a cat could look depressed, she was. 


Quote of the day: The way you get meaning into your life is to devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning. ~ Mitch Albom

Peter and I have been working this week and particularly this weekend to get our deck back in shape after three weeks of reconstruction on the brick walls. I am thrilled to have the scaffolding off our deck and to bring all our plants and flowers back to our space. Everything on our deck was safely secured in another location for three weeks and our deck looked barren and filled with dust. I wish I could say the construction is over. It isn't! The scaffolding remains outside our deck door, as they are still working on the brick. Yet reclaiming our space is delightful!

Later this afternoon, we went by to visit and water Mattie's tree. As you can see, the tree and its remembrance decorations are intact and looking good. We tried to visit the space on a Sunday, with hopes that less children and families would be around. But since the tree is on the school's playground, it is a popular destination on the weekends. There were many children and families by or in the sand box (which is to the right of the tree) and on the swings. Naturally that is how it should be for them, but it doesn't make it easy to visit and reflect peacefully by Mattie's tree.