Saturday, December 9, 2017

Saturday, December 9, 2017

Tonight's picture was taken in December of 2008. Mattie was home between treatments and requested all sorts of Chinese food. I personally love how Mattie wanted to use chopsticks given that three out of his four limbs were recovering from surgery. Mattie was sitting on our couch, which typically is in front of our picture window. But a hospital bed was in our living room, in the exact location where the couch used to be. Our whole home looked like a hospital in a way, but given all we were balancing it made no difference to any of us. What I do remember, was I learned all the wonderful on-line clothing companies which sold clothes with velcro enclosures. These types of clothes were a God sent, since there was no way I could help Mattie put on pants or jackets without velcro. He couldn't get his arms into jackets or legs into pants. 


Quote of the day: Thank goodness for the first snow, it was a reminder--no matter how old you became and how much you'd seen, things could still be new if you were willing to believe they still mattered. ~  Candace Bushnell

Washington, DC experienced its first snowfall for the winter. The forecasters as is typical blew the prediction as the snow did not start or stop as was reported, nor did DC get any notable  accumulation. Keep in mind that in DC, an inch can shut down the city. 

On Peter's walk this morning with Sunny, he snapped this photo from Washington Harbor, looking at Rosslyn and the Key Bridge. A real snow sky!

This is a snapshot of Mattie's memorial garden in our commons area. Peter and Mattie planted many of the trees together in this spot. But notice the garden hooks holding three bird feeders. I gave these bird feeders to my friend Mary, as she was dying. I wanted her to be able to look out her window and see birds. When Mary died, I moved this set up to Mattie's garden. When I see the birds flocking around the feeders, I think of my friend Mary. 

Peter and Sunny headed out on a walk, and I snapped a photo from Mattie's bedroom window! It is hard to see but the snow was coming down. Sunny grew up in South Carolina and he is NOT a snow fan. He manages through it if it is falling down, but he doesn't like accumulated snow. He doesn't like walking on top of snow at all. It is actually very funny to watch him! 

The highlight of my day today was I went out to the Ritz Carlton for high tea. I have always wanted to do this. There was a pianist playing holiday tunes in the background and the room was filled with people, all enjoying time with each other. You got to pick your own loose tea, and a lovely tea pot sat on a warmer in front of you! On a cold snowy day, this was very special. They serve you all sorts of tiny treats, from sandwiches to cookies, scones, and pastries! It was a two hour break that was very needed and memorable. 

Friday, December 8, 2017

Friday, December 8, 2017

Tonight's picture was taken in December of 2008. Mattie was home from the hospital for Christmas time. Not the best of times or happy memories, despite it being a holiday. In fact, from Mattie's cancer treatment, what resulted for me is a strong dislike for Thanksgiving and Christmas. Mainly because our last holidays together were horrific. Something you can't even imagine. Mattie was beyond miserable, in pain and dealing with a host of mental health issues. On that particular day, this wreath was dropped off for Mattie at our home. It was created by all his friends in first grade (a school year he never participated in), and each leaf on the wreath was made of paper, and each piece of paper contained a written message for Mattie. We had this wreath hanging on our front door for the longest time. 


Quote of the day: The psychosocial issues do not end when the medical treatment does. ~ Victoria Sardi-Brown


Headache and all, I ran a 6 hour long licensure board meeting today. We had about 20 people from the public come before the board, so needless to say, I am tired. But that is only one of my jobs to complete for the day. My other hats include Foundation leader and caregiver, and that work now begins. 

I mentioned on the blog a week or so ago, that the editor of Cure Today reached out to me. They wanted to write an article on Mattie Miracle. Since I have had people interview us before with less than 100% accuracy, I decided to do this interview by email. That way I could write our responses to the questions and the chances of the content accurately depicting the Foundation would be high. The article came out today and I posted a link to it below. Despite writing each response thoroughly, something did get lost in the translation. You don't get a chance to proof someone else's article, but I did want to point out the correction to my readers. 

As the article points out, in March of 2012, Mattie Miracle voiced its vision for the need for evidence based psychosocial standards of care at our Capitol Hill Symposium. Mainly because psychosocial care varies greatly by treatment facility and we want to see a more standardized approach to this important care. Care and support that should not only be offered at diagnosis, but throughout the cancer journey, which includes survivorship or bereavement care. The article implies that the Symposium was hosted to DEVELOP Standards of Care. Not exactly! The Symposium was designed to call attention to the importance of psychosocial care for childhood cancer and to highlight cutting edge research and the issues children and family face. The Symposium served as the spring board for our vision. After the Symposium, Mattie Miracle assembled a team of over 80 health care professionals from the US, Canada, and the Netherlands. This team worked for three years on the rigorous methodological process to create evidence based Standards. Which of course resulted in the publication of the Standards in 2015, in a top tier medical journal, Pediatric Blood & Cancer. A publication Mattie Miracle funded and paid for open access, so the public can download the articles for free indefinitely. 

Addressing The Psychosocial Side Of Childhood Cancer:

https://www.curetoday.com/articles/addressing-the-psychosocial-side-of-childhood-cancer-

Thursday, December 7, 2017

Thursday, December 7, 2017

Tonight's picture was taken in December of 2008. Mattie was sent home for Christmas. I suppose the thinking was that children wanted to be home for the holidays rather than in the hospital. Unfortunately the holidays for us were beyond miserable. Mattie was in terrible pain, exhibiting PTSD symptoms, and was truly depressed. Our days at home did not look like photo, but given that friends had dropped off these holiday items (reindeer antlers, a red Rudolph nose, etc) for Mattie, Peter decided to dress up and try to liven the spirit in our home. It worked but only for a few minutes.... long enough to take this photo. 



Quote of the day: Selfishness must always be forgiven you know, because there is no hope of a cure. ~ Jane Austen


I am in week two of dealing with an enormous cluster headache. This makes doing any activity MUCH harder. In addition to the work that we do for the Foundation, which is a full time job, Peter and I have been doing intense caregiving for our older neighbor for the last three weeks. Our neighbor fell and needed surgery on her arm and leg. Both of which are immobilized, making it impossible to do even the most basic of activities. She can't cook, cut food, lift anything, do her laundry, leave her home without supervision, and the list goes on. However, these last three weeks have been an eye opener, because our neighbor lacks the support of family or close friends. 

One should be asking.... how was she discharged from a hospital? It is a good question, because I would hope despite a patient insisting on wanting to go home, that a hospital would have some responsibility to ensure that proper care can be provided at home. Taking a patient's word for it, SHOULD NOT count. If Peter and I did not step in over the last three weeks, I am quite certain this situation would have gone dire ASAP. As it is, it is still hanging on by a thread. 

What I am physically aware of however, is that between round the clock Foundation work and caregiving, this is a very bad combination. What does caregiving for her entail..... laundry twice a week, grocery shopping twice a week, ALL dinner preparation, clean up of dishes, changing of her bed linens, washing her hair, picking up her mail, getting her prescriptions, throwing out her trash, etc. It is a significant responsibility and effort on our part, of which we are doing it all without compensation for our time or the items we are purchasing. When I wonder why I am tired at the end of the day, I don't have to think about it for long. 

But then I reflect on our care community when Mattie was ill. Some of the people who helped we did not even know, yet this group of people were totally committed for over 14 months. Given what I am experiencing now with my neighbor, it makes me pause and reflect on how deeply grateful I am and that I am in awe of the community that Mattie built. Not that I wasn't aware of this before now, I always was and will always be grateful to Team Mattie, but now I have an even greater appreciation for just how stellar our friends are. 

Wednesday, December 6, 2017

Wednesday, December 6, 2017

Tonight's picture was taken in December of 2008. Mattie was in the clinic and had just received a dosage of his experimental immunotherapy treatment. Don't get me started on that medication..... in my opinion it caused more harm than benefit. In any case, after any dosage, Mattie always was ill, with a terrible fever and chills. But not just any chills, chill that are called rigors. Rigors are an episode of shaking or exaggerated shivering, and with Mattie it almost looked like a convulsion. That was how severe it appeared. In any case, while having a bad reaction, Santa came in to visit children in the clinic. Santa had guidance from Linda, Mattie's child life specialist, and he picked all the items Mattie would like. Despite how badly Mattie felt (as you can see, he could hardly lift his head from the pillow in his lap), he still greeted Santa and thanked him!   


Quote of the day: People tend to dwell more on negative things than on good things. So the mind then becomes obsessed with negative things, with judgments, guilt and anxiety produced by thoughts about the future and so on. ~ Eckhart Tolle


Tonight's quote captured my attention. Mainly because I am one of those people who focuses on the negative. I am not sure people who interact with me, would classify me in this way. But I do, because I am! I honestly can't remember who I was prior to Mattie getting cancer, but I would like to say I wasn't always this way..... the negative wasn't always on the forefront of my mind. 

I do think losing an only child to cancer, has clouded my perspective on life. I think at one time, I may have had the crazy notion that we had control over our own destiny if we worked hard and led a "good" life. What a joke! So much about life is out of our control, and when you see children getting cancer and dying, then I think such a reality rocks your world. Unfortunately the tremors from this rocking reverberate through your days, weeks, and years continuously. I do think however, that grief and loss do become even more heightened over the holidays. The mere presence of Christmas trees, wreaths, and decorations are bittersweet for me. 

I was chatting with a friend today, who like me, also focuses on the negative. We are very aware of the fact that the majority of the world is not like us. Thankfully. I can firmly say this because with the amount of accidents, catastrophes, natural disasters, and losses we hear about and experience on a daily basis either personally or through the media, if everyone was like me, we would have one depressed world. 

Now as tonight's quote relates to grief and loss...... When you lose a loved one, this loss is your whole world. So much so, that you can't understand why others around you are functioning, while for you, your mind and heart are spiraling downhill. In fact, you observe others are celebrating, smiling, and going about their daily routine, while here you are in shock, grieving, and not knowing how you are going to get through the next minute. I am very sensitive to how people interact with people who have lost a family member or close friend. Yes the lose maybe acknowledged by others on a cerebral level, but that is definitely different than emotionally feeling and living with the loss. So many can't and won't live in the negative with you, and this is ever so obvious to me whenever I bring up the topic of child loss. This topic makes people edgy, so much so, that platitudes, redirection, and the positive spin are the bi-products. I totally get why people want to spin the horrible into something positive, but the ironic thing is the only thing this accomplishes, at least for me, is to further focus on the negative. The negative being....... my differences, people can't relate to me, I can't relate to them, and the divide increases. 

So when people tell me on a rare occasion that they only see the negative, all I can say is I get it. I don't sugar coat it, but acknowledge that this is the reality for some of us. When I say some of us, I am not implying that only those going through child loss are like this. There are many reasons why people all around us may focus upon the negative. The issue as I see it, is so many won't accept this statement, and want to change it or our outlook. I realize it is sad to hear that one primarily sees the negative in life, but to me it is far sadder that this can't simply be acknowledged and heard. I have found acknowledging this reality does in a way make one pause! Pausing allows the person who feels this way to be heard, it allows what is being said to sink into the listener's head, and also by not reacting with a remedy or band-aid, this is in essence saying...... I hear you, accept what you are saying, and I am not running away from this news. 

Tuesday, December 5, 2017

Tuesday, December 5, 2017 -- Mattie died 429 weeks ago today.

Tonight's picture was taken in December of 2008. We were outside in our commons area because a friend of ours brought over her dog to visit Mattie. She thought that would be a good way to get Mattie outside and playing. It worked very well. Mattie always wanted a dog and he was very animated to be around this very big furry friend. Despite being in a wheelchair (with his leg in a cast and up in the air), he got around and the dog was super patient and friendly with Mattie. This dog was a lot like Sunny in disposition despite his size. 




Quote of the day: When you are stuck in the same routine for months, you stop seeing new opportunities. ~ Dhaval Gajera


I think there is some truth to tonight's quote! My routine always involves work. I can't think of the last day when I just sat around and did exactly what I wanted to do. Perhaps this is the problem with adulthood in general. But I do think the daily grind of a routine can wear one out and it is depressing. Yet I remember back to the days of living in the hospital and trying to cope with Mattie's cancer, and the only thing I could think of then was...... how lucky people are to have their daily and mundane routines. How I longed to be able to do daily chores around home and in town. In 2008 and 2009, that is what I wanted, and it seemed like something that would never occur in my life again. But fast forward to 2017, and here I am talking about daily chores. Despite my complaining, I always carry with me great perspective. Another thing I learned from Mattie. Who I consider my life's greatest teacher. 

For a couple of hours today, I went to my friend's house to help her wrap Christmas presents. I have done this since 2009, the year Mattie died. It is a yearly tradition in a way. Now one could say that wrapping gifts is yet another chore. Which it is, but the difference was I was taken out of my environment for a while. There was no dog to walk, no caregiving to provide, no chores of any kind, just to stay in one place and wrap. I listened to the radio and tried to forget about my headache. What I thought would be a chore turned out to be a needed break. Below is a photo of some of the gifts I wrapped! I have perfected the art of cello wrapping. When we started the Mattie Miracle raffle years ago, I was determined to make our baskets look appealing, so people would buy tickets. So I taught myself how to do this! Now it isn't unusual for me to get wrapping requests from others! 

Monday, December 4, 2017

Monday, December 4, 2017

Tonight's picture was taken in December of 2008. Mattie was in his fifth month of treatment and had both limb salvaging surgeries behind him. You can see Mattie's left arm was still in a cast. His right leg looked just like his arm.... in a cast. Cancer transformed Mattie physically from an elementary school aged child back to being a toddler. Which frustrated him greatly. That day, Mattie hobbled over to the piano, holding onto pieces of furniture for balance until he got to the piano bench. He then sat down and started creating music. It was a memorable and priceless moment! 




Quote of the day: Constant kindness can accomplish much. As the sun makes ice melt, kindness causes misunderstanding, mistrust, and hostility to evaporate. ~ Albert Schweitzer


It is 6:45pm, and I have been moving all day long. This isn't a rare occurrence, but as I am now firmly in week two of what I thought was a migraine, all tasks and requests at this point are a chore to me. I started my day by seeing my neurologist. I have the pleasure of seeing him every six months and have for years. He has seen me at more stable points and of course on a day like today. I typically try to block out some information, but I also am an episodic cluster headache sufferer, which is what I am dealing with now. People like me are RARE, big surprise and there truly is NO KNOWN antidote to relieve this kind of pain. So what is a cluster headache?

First of all the population prevalence of cluster headache patients is 0.1 to 0.4%. This is considered a rare disease and works out to a minimum of 400,000 sufferers in the U.S and over 7 million worldwide. Cluster headaches are called the “suicide headache” from a long history of patients taking the ultimate step to stop the pain. Approximately 15 to 25% percent of cluster headache sufferers are chronic; they can experience multiple headaches every day for years. Cluster headaches occurring in two or more cluster periods lasting from 7 to 365 days with a pain free remission of one month or longer between the clusters are
considered episodic.

Cluster headache  is a neurological disorder characterized by recurrent, severe headaches on one side of the head, typically around the eye. There is often accompanying eye watering, nasal congestion, or swelling around the eye, on the affected side. These symptoms typically last 15 minutes to 3 hours. Attacks often occur in clusters which typically last for weeks or months and occasionally more than a year. 

Needless to say my typical rescue medications I take are NOT working. So the next recommended form of treatment is steroids for a week. I filled the prescription, but given I watched Mattie on steroids, I am not eager to take them unless absolutely necessary. Mattie became angry and aggressive on steroids, so much so, that in his medical chart was noted.... do NOT give steroids. Steroids are typically given to cancer patients to manage chemotherapy side effects, but in Mattie's case other alternatives were necessary. As for myself, I am waiting for the cluster cycle to end, in hopes of getting a reprieve. 


To read more about Cluster Headaches, go to:
http://medcraveonline.com/JNSK/JNSK-03-00092.pdf

Sunday, December 3, 2017

Sunday, December 3, 2017

Tonight's picture was taken in December of 2008. A colleague of mine is a quilter and lives in the Midwest. She had been reading Mattie's blog back then and noticed that people referred to Mattie as "Super Mattie." So literally she surprised me with this wonderful gift. I still have this quilt and love it. Mattie was indeed SUPER, given all that he endured for 13 months in treatment. It truly was super human, because I am not sure most adults could have handled what Mattie faced...... and remained smiling. 






Quote of the day: The moon is a friend for the lonesome to talk to. ~ Carl Sandburg

Check out our postal cat supervisor. The mass mailing process continued today. Who knew Indie would love a US postal box? She doesn't like cardboard boxes at all! Newsflash..... the boxes are going to the post office tomorrow, so Indie will need to be relocated out of them.  

Looks cozy no? I may post a lot of photos of Sunny, but do not mistake who rules the roost in our home. Indie has her way of getting exactly what she wants. 

Though tonight is a Super Moon (a supermoon happens when the full moon coincides with the moon's closest approach to Earth in its orbit. Supermoons make the moon appear a little brighter and closer than normal), I can't see it at all in DC! Peter went looking for it, but couldn't find Mattie Moon. 

My mom sent me a big moon photo outside her home in Los Angeles!

My friend in cancer, sent me this photo of the moon in Arlington, VA. So I know it is out there!!!