Saturday, June 29, 2019

Saturday, June 29, 2019

Tonight's picture was taken in June of 2009. Three months before Mattie died. That day we were visiting friends in Alexandria, VA. Their backyard was fenced and we brought Mattie outside to play. In classic Mattie style, he used the big fly catcher (which actually was a gag gift given to all the kids at Mattie's 7th birthday party) to swat at the bubbles blowing his way. I won't forget that moment in time, nor Mattie's heightened stress and anxiety. I never moved very far from Mattie, because I never knew when things were going to turn emotionally for the worse. Happy moments were actually fleeting.


Quote of the day: Rare caregivers may need more support from the doctors and care professionals they interact with. Fewer than half (48%) have had a doctor, nurse, or social worker ask what was needed to provide care to the recipient, and just one in four have had these discussions about their own care needs. ~ National Alliance for Caregiving

I came across a report (which you can find below) entitled, Rare Disease Caregiving in America. The report was written by the National Alliance for Caregiving, which is a wonderful non-profit based in my neck of the woods. I remember using many of their reports in graduate school, and their studies helped me craft my dissertation. I believe this organization conducts meaningful and solid studies, that truly shed light on the stresses of family caregivers. 

But what caught my attention about this report were the words.... rare disease. As many as 30 million Americans have one of the 7,000 known rare diseases. This is defined as a health condition affecting fewer than 300,000 people nationwide. In my advocacy community, we all identify childhood cancer as a rare disease, since around 16,000 children are diagnosed a year. This study however seems to focus upon diseases which are genetic in nature, and clearly childhood cancer is not inherited. Therefore it doesn't make the list. Yet despite that, the findings from this study are VERY applicable to parents caring for a child with cancer. 

In their study, 62% of rare caregivers (their terminology, not mine) are providing care to a child under the age of 18, with the majority of these children being their own. The study collected data from 1,406 adult caregivers, and here are some highlights of what was found......

1. 74% of caregivers struggled with a sense of loss for what their care recipient’s life could have been and fewer than half felt their role had a positive impact on their family (44%).
2. Rare caregivers reported that providing care to their care recipient was emotionally stressful (67%), twice as high as that of general caregivers.
3. Four in ten reported having fair or poor emotional or mental health (41%).
4. Around 30% rated their physical health as fair or poor, and 58% found it difficult to take care of their own health.
5. Rare caregivers may need more support from the doctors and care professionals they interact with. Fewer than half (48%) have had a doctor, nurse, or social worker ask what was needed to provide care to the recipient, and just one in four have had these discussions about their own care needs.
6. Rare caregiving can ultimately impact the finances of the rare caregiver and their family unit, and these financial impacts loom large. Half of rare caregivers face high levels of financial strain (51%) and three out of four worry about the ability of their own family to pay for care. 
7. Nearly all rare caregivers have experienced financial hardship because of their caregiving role (86%). 
8. About half of rare caregivers have difficulty maintaining friendships (51%) and 53% report feeling alone.

Back in 2003, when I defended my dissertation, my focus was on caregivers of older family members. I had the privilege of talking to over 100 caregivers for my study and to this day, I can recall the stresses some of these individuals were under. So much so that I wondered how on earth they were functioning at work! But I was also very aware of the fact that they were in this role for the long term. A role they freely chose in most cases and as such, they were hesitant to even refer to themselves as caregivers. Sometimes talking about their role in this way, made them feel badly or guilty. In essence they deemed it as complaining but of course that wasn't what they were actually doing. There is a difference between needing support and complaining. 

Do I think there are commonalities among all family caregivers (exhaustion, isolation, financial hardship, etc)? Absolutely! Whether caring for an adult or a child with an illness or special need we share and experience the world in similar ways. Yet with that said, I would say that people in our society are not accustomed to seeing children who are ill. It scares them and the natural way of dealing with fear, is shutting the problem or issue out! I experienced this greatly with Mattie's cancer diagnosis and most definitely with his death. Friends did not know how to interact with me and therefore didn't! I lost many close friends (people I knew for 15+ years) because of childhood cancer and I would have to say like any caregiver the ramifications of the role we play remains with us always. Time goes by, but we don't forget the vital role we served. 


Rare disease caregiving in America 
https://www.caregiving.org/wp-content/uploads/2018/02/NAC-RareDiseaseReport_February-2018_WEB.pdf

Friday, June 28, 2019

Friday, June 28, 2019

Tonight's picture was taken in March of 2009. Literally 6 months before Mattie died. At that moment in time, we really thought treatment was coming to an end and soon we would be able to focus on physical therapy to retrain Mattie how to walk. Of course that never happened. 

That day in March, Mattie wanted to play outside in his sandbox. So Peter brought a heater outside and we bundled Mattie up. What you may not realize is that Mattie was unable to walk to the sandbox. So we lifted him into the box. Mattie loved his frog sandbox, and this box remains outside our deck door for other children to play with in our complex. 


Quote of the day: Common knowledge might be shared by many people, but there is no knowledge that dangles unattached to any subject. Unlike water or gold, knowledge always belongs to someone. ~ Jennifer Nagel


Knowledge always belongs to someone! It's an interesting quote. I think at times we assume things about people around us, never realizing what knowledge they actually possess. For example, I was doing laundry today in our complex, and had the opportunity to talk on a deeper level with one of my neighbors. On an aside, my joke is that laundry is an event, not just a task! It's an event because we have to leave our townhouse, go outside, and enter into our building. From there we take an elevator to our laundry room, which is three floors below where we live. Doing laundry was far more humorous when Mattie was alive. As children have a way of generating dirty clothes, and I had to figure out a way to balance the clothes, the detergent, and a baby in tow. We made it work!

However, while in the laundry room today, I met one of my neighbors. I knew her already, as she has a wonderful daily walking routine which causes her to pass my townhouse. We have chatted before, but not as extensively as we did today over laundry. We were talking about family. She told me about hers and then of course she asked about mine. Since she talked about her children, I felt compelled to tell her about Mattie. Mind you she sees a frog sandbox outside our deck door, but she has never seen me outside with a child in it. Today, I helped her put two and two together. She was absolutely STUNNED that I had a child die from cancer. I assume everyone around me knows this information. Just like Hester Prynne in the book, The Scarlet Letter, wore a red letter to signal to others her adulterous affair, I feel like I have a symbol over my head that everyone around me sees that announces...... I LOST A CHILD TO CANCER. 

My neighbor appeared absolutely heart broken! She gave me many hugs and then said to me that whatever issues and problems she has had in her life, pale in comparison to what I face. Personally I feel child loss is a nightmare, but at the same time, I don't want to discount the NUMEROUS other hurts, pains, traumas, and events in other people's lives. What is particularly noteworthy is that this year marks the 10th anniversary of Mattie's death. For a decade I have been coping with this loss and yet regardless of time, we still have a story to tell. A story which continues to impact our day to day lives and of course our future. Somehow my neighbor understood that without me have to connect the dots for her, which was refreshing. 

Thursday, June 27, 2019

Thursday, June 27, 2019

Tonight's picture was taken in June of 2004. Mattie was two years old and this photo captures him in his element. Mattie loved the rain, playing in it, and was good at getting me out of my comfort zone. As I really did not like spending time outside prior to Mattie and I most definitely disliked the rain. Not to mention the cold! But with Mattie, it did not matter what the weather conditions were like... we went outside. 







Quote of the day: When we are no longer able to change a situation – we are challenged to change ourselves. ~ Viktor E. Frankl


Peter and I have noticed a change in Sunny's energy level. I would say that Sunny is no longer perky on his late morning walks. As first, I attributed it to his age. However, while walking Sunny this morning, I had a conversation with a fellow dog owner. He was walking his two year old golden retriever by the water front. Like Sunny, this dog had a heavy fur coat, and was a larger size dog. This fellow was telling me that his young dog stops constantly to sit down and then doesn't want to walk anymore. 

Exactly what we are seeing with Sunny. He then said to me, that our dogs are not alone. All the bigger dogs he is coming across, have the same issue. They are affected by the intense heat. I have walked Sunny in the summers of 2017 and 2018, yet I don't remember him affected as much by the heat as he is now. Yet, I reflect on his energy level for early morning and evening walks, and it is just fine. Therefore it is quite evident that Sunny seems to do better when the sun is down. 

I wouldn't dream of taking Sunny out for a walk without my back pack of water and his bowl. I intuitively knew that! As water breaks appear to be crucial for him. I just never put two and two together that Sunny maybe exhausted from the heat. Which would explain his need for a lot of water on our walks and his periodic stopping. He will literally pull me over to a tree and sit down, panting intensely. Today, his sitting was so pervasive on our walk that I was afraid I wasn't going to be able to get him back home. 

I included an article below on heat exhaustion in dogs. As I think knowing symptoms to look out for before they happen is a good thing. 


Heat Exhaustion in Dogs: Signs Your Dog Is Overheating
https://www.hillspet.com/dog-care/healthcare/heat-exhaustion-in-dogs

Wednesday, June 26, 2019

Wednesday, June 26, 2019

Tonight's picture was taken in June of 2002. Mattie was two months old. I am not sure whose expression I love more. Peter, who looked peaceful and happy, or Mattie, who looked like he was taking in the world around him and pondering deep thoughts!



Quote of the day: It is 2019, and yet when you evaluate the cancer plans in all 50 States, only FIVE of them address childhood cancer. Of those 5, only TWO States have goals and objectives to meet the psychosocial needs of children with cancer. ~ Victoria Sardi-Brown


It has been the week of connecting with other cancer advocates from around the Country. Yesterday I spoke to an advocate in Seattle, today I spoke to an advocate in South Carolina and on Friday, my call will take me to Ohio. On each call, the focus is our Psychosocial Standards of Care. Today's advocate was looking for ways to get "childhood cancer" integrated into her State's plan. You maybe confused? Perhaps you are saying to yourself..... doesn't childhood cancer already exist in the plan?! Or is that State lucky enough not to have children with cancer???? Unfortunately the answer is NO! Even worse, childhood cancer is a topic not even covered in the majority of State Plans in our Country. 

In 2017, I was asked to consult with the Virginia State Plan Cancer Control Committee. As Virginia was opening its plan for evaluation and an advocate contacted me about getting some psychosocial data so she could make a case for the inclusion of psychosocial care in the plan. Of course our goal is to get the Standards integrated into the Virginia Cancer Plan. 

So what is a cancer plan? Comprehensive cancer control (CCC) plans identify how an organization or coalition addresses the burden of cancer in its geographic area. The plans are specific to each region and based on data collected about people living there. They take the strategies that have worked, either in that region or in a similar place, and make them into a blueprint for action. Plans are typically renewed every five years. The Centers for Disease Control and Prevention (CDC) fund states, territories, and Native American tribes to develop public-private coalitions or partnerships. These partnerships create the state plan and bring together interested and involved groups and individuals to maximize the use of existing resources and identify new resources to further their efforts. 

When I started working with Virginia, I decided to do some digging around. Because I wanted to know what other States do! I found this fantastic database through the George Washington University that details cancer plans throughout the USA. From this database, I learned that 12 states include the word CHILDREN in their cancer plan. But that doesn't refer to children with cancer. Most of these 12 State Plans, are referring to children in the context of secondary smoke from adults and skin cancer prevention.

Only the states below focus on children with cancer. THAT'S FIVE STATES!!!! Out of those 5, only 2 (marked with an *) address psychosocial issues. SHOCKING, NO???

DC: Improve the policy and regulatory environment affecting access to pediatric and adult palliative care services in the District

NC: Enhance the early diagnosis, treatment, and quality of life for those individuals diagnosed with childhood cancer and their families 

*NJ: To enhance the quality of life of the child, adolescent, and/or young adult patient with cancer from diagnosis through treatment to survivorship across the life span

• To foster the psychosocial health of the child with cancer and the family
• To improve care for adolescents and young adults diagnosed with cancer through encouraging participation in clinical trials
• To promote awareness of palliative care strategies for the child with cancer among healthcare professionals, patients, and families. Pain management can be used as an example of how these strategies can be implemented successfully
• To reduce/eliminate suffering and death due to childhood/adolescent cancers and to provide survivors and families the services needed to live meaningful and productive lives

TN: To reduce/eliminate suffering and death due to childhood/adolescent cancers and to provide survivors and families the services needed to live meaningful and productive lives

*WY: Foster the psychosocial and physical health of the child with cancer and the family

• Facilitate and monitor pediatric cancer needs in Wyoming
• Increase education related to appropriate end-of-life care for childhood cancer patients

For those of you who are interested in learning more, check out the links below!

The Databases:
https://smhs.gwu.edu/cancercontroltap/goalbank
https://www.cdc.gov/cancer/ncccp/ccc_plans.htm

Check out the link to the NJ state plan. Look at chapter 5 on children!
https://smhs.gwu.edu/cancercontroltap/content/foster-psychosocial-health-child-cancer-and-family

Check out the link to Wyoming's state plan. Particularly page 41:
https://smhs.gwu.edu/cancercontroltap/content/foster-psychosocial-and-physical-health-child-cancer-and-family

Tuesday, June 25, 2019

Tuesday, June 25, 2019 -- Mattie died 509 weeks ago today.

Tonight's picture was taken in July of 2002. Mattie was three months old and to me Mattie looked much more like Peter as a baby. As Mattie became a toddler and definitely by preschool, he looked just like me. 





Quote of the day: Change the way you look at things and the things you look at change. ~ Wayne Dyer

Peter drove from Oklahoma City to Tulsa, for his meetings there tomorrow. While on his drive, he traversed the famous Route 66. Peter knows how I am fascinated by 66's history and perhaps I just like nostalgia. But why specifically? Naturally there is a Mattie link! Keep reading. 

U.S. Route 66 or U.S. Highway 66 (US 66 or Route 66), also known as the Will Rogers Highway, the Main Street of America or the Mother Road, was one of the original highways in the U.S. Highway System. US 66 was established on November 11, 1926, with road signs erected the following year. The highway, which became one of the most famous roads in the United States, originally ran from Chicago, Illinois, through Missouri, Kansas, Oklahoma, Texas, New Mexico, and Arizona before ending in Santa Monica in Los Angeles County, California, covering a total of 2,448 miles. US 66 underwent many improvements and realignments over its lifetime, but was officially removed from the United States Highway System in 1985 after it had been replaced in its entirety by segments of the Interstate Highway System. Portions of the road that passed through Illinois, Missouri, New Mexico, and Arizona have been communally designated a National Scenic Byway of the name "Historic Route 66," returning the name to some maps.

I absolutely LOVED the photos Peter sent to me! As soon as I saw them, what immediately popped into my head was the James Taylor song, Our Town. This song was featured in the movie Cars. I can't tell you how many times Peter and I watched this movie with Mattie. It was a movie we saw hundreds of times. I attached the clip of this song from the movie below. 

The song captures the pain of change beautifully. In the case of the movie, they were talking about how Route 66 was America's road! Thanks to the Mother Road, towns and communities flourished and catered to motorists. However, with the invention of the Interstate, Route 66 became obsolete. As did the many of the towns and stores. 

It is amazing how the brain associates things together. For me.... Route 66, the movie Cars, and Mattie are heavily intertwined. James Taylor's song touches my heart because it reminds me that things constantly change. Nothing stays the same. Not just with things, but with people too. As when I first saw the movie Cars in 2006, it would never have dawned on me that Mattie wouldn't be in my life three years later. 

The iconic signs along Route 66 capture my attention. It is a bit of history, or perhaps the nostalgia of simpler times. Where people had less, and yet seemed happier. 

I am saddened that we never had the opportunity to show Mattie Route 66, as I know he would have absolutely loved seeing and experiencing it. 

Who would have known that Route 66 and the song Our Town, could trigger such strong memories. But ironically they do! It all reminds me of Mattie and the terrible change we continue to endure each day with his loss. 


Our Town:
https://www.youtube.com/watch?v=fbHbRipzRgE

Monday, June 24, 2019

Monday, June 24, 2019

Tonight's picture was taken in July of 2002. Mattie was three months old. I had him propped up on the couch and as you can see he was desperately trying to focus his eyes on the trees and birds outside our window. To me this photo captured the beauty and innocence of Mattie. 


Quote of the day: But nothing makes a room feel emptier than wanting someone in it. ~ Calla Quinn

The beauty of having Sunny and Indie in my life is that they are excellent company, keep me to a routine, and are true companions. This week Peter is on business travel so it is the animals and me. 

Peter and I have noticed a change in Sunny the last few months. Our vet calls him a senior, and I suppose he is headed in that direction. He needs a lot more breaks when we walk and a ton of water to combat this heat. I walked Sunny on the Washington Mall today and he loves stopping under the trees for water breaks. 

We are very lucky that within blocks of where we live we can walk to the National Mall and to most memorials and museums. 

Do you see the Great Blue Heron in the pond?

While my view is of Washington, DC, this was Peter's of Oklahoma. 

Peter went out to dinner tonight with several of his clients. He has had a long staying friendship with these women. They snapped this photo of him and I absolutely love how Peter is well coordinated with the backdrop!

Sunday, June 23, 2019

Sunday, June 23, 2019

Tonight's picture was taken in July of 2003. Mattie was over a year old and it was his first time to the Outer Banks. I can safely say that trip we spent NO time on the beach. Mattie did not like the feeling of the sand on his feet and he also was scared by the sound of the waves. Instead, Mattie was focused on the hose! We spent many an afternoon out on the deck doing water play. 


Quote of the day: The life I touch for good or ill will touch another life, and in turn another, until who knows where the trembling stops or in what far place my touch will be felt. ~ Frederick Buechner

As I mentioned in last night's blog, we were invited to our friend's anniversary party last night. Those who know me well, know I am no longer a party person. But we are very fond of our friends and wanted to show them our support. 

I am in love with this dress. I found it while on our trip to Maine to celebrate our nephew's college graduation. Literally before going to the airport, we walked around the town and being that it was Memorial Day weekend there were great sales. We went into Brooks Brothers, because Peter gets many of his shirts there. While in the store, I saw the women's section and this dress. I love pink, the puffy skirt, and the ballet ribbon at the waist.

This dress was meant for me and I thought it would be perfect for my friend's garden party. The dress inspired me to also learn how to do a 'messy bun.' I think I pulled that off well too and should have had Peter snap a photo of the back of my head. 

Last night's party was magical. I love tents and twinkling lights! In fact at our own wedding reception, the room had vaulted ceilings and we too put twinkling lights on it. So it reminded me of our own wedding. It was special to hear live music too and to see the musicians and the party goers having a good time together. 

We met many lovely people at the party. Of course at first it is awkward because we did not know many of the guests, but striking up conversation is never a problem for me. Don't you know who I gravitated to???? Not on purpose really, it just happened. I had the opportunity to chat with a pediatric nurse who cared for kidney transplant patients and another woman whose son died for a different disease. I have noticed by sharing my story, it draws out others who share this commonality. 

Today I took two of my friends out for high tea at the Ritz-Carlton. I am a big tea person, so I always enjoy this experience and wanted to celebrate the achievements of my friends. 

Naturally I snapped a photo of the menu! 

There were other teas, but I only snapped a photo of the black tea list. Ironically prior to Mattie developing cancer, I only liked herbal teas. I detested strong tea. However, while caring for Mattie in the hospital, our care community dropped off coffee for Peter and tea for me. The tea was always black based. It was an adjustment for me back then, but given that I drank only black tea for over a year, I now can't go back! To me herbal teas no longer have flavor. 

Though this photo was taken into the sun, you get the feeling for our afternoon. I am pictured with my 19 year old friend, Katharina. Mattie was 2 years younger than her, but when Mattie was ill, Katharina was a good friend to all of us (and continues to volunteer for the Foundation). It is amazing to see this elementary school child grow up to be a college student!