Saturday, October 14, 2017

Saturday, October 14, 2017

Tonight's picture was taken in October of 2008. Mattie had already undergone his first limb salvaging surgery which was why he was in a wheelchair. I know that this photo was taken on a Friday. Why? Because Mattie was watching the chemistry club doing experiments on the hospital floor. Every Friday the club came and interacted with patients. They were fabulous and the chemistry club president took a liking to Mattie. On days Mattie wasn't able to come out into the hallway, Chris (the president) brought the experiments into Mattie's room. That particular day, Chris was making ice cream with nitrogen gas. This fascinated all of us. Mattie was surrounded by buddies... his two child life specialists (Whitney and Lesley) and his big buddy (and fellow childhood cancer friend), Brandon. Though that did not take Mattie pain or issues away, having this support made a huge difference to our quality of life. 



Quote of the day: We are shaped and fashioned by what we love. ~ Johann Wolfgang von Goethe

Peter and I were tired today after a long week. I have to remember that in addition to doing Mattie Miracle work, I was hit by a horrible migraine for a week. I am finally coming out of that. Despite the grayness and change of weather, Sunny needs to go out for a walk. So we headed to Roosevelt Island, a Mattie and now Sunny favorite. In the spring and summer, the Island is always packed with people and it is hard to find parking. But now that the weather is turning cooler, there is no parking competition. This is the one benefit of the weather changing. I also find that in the winter time, only Sunny and I are outside walking. There is no congestion on the sidewalks, and it is delightful. 

Meanwhile this afternoon, while I was sitting on the couch, I saw that the sun was coming out. It was such a glorious sight, I snapped a photo! I really rely on our room with view in the cooler weather months, and soon many of our outdoor plants will be brought in for the winter. Indie just LOVES all the plants coming in and we are entertained at watching her hide and jump around the plants. 

Friday, October 13, 2017

Friday, October 13, 2017

Tonight's picture was created by Tim Beck, our Facebook friend. Tim sent it to us today and it is always a lovely surprise when he sends us a Mattie collage. At the center of this collage, was a photo I took of Mattie sitting on a white rocking chair in October of 2002. Mattie was only 6 months old and holding onto a real pumpkin. Then Tim superimposed on the pumpkin a photo I took of Mattie on Halloween of 2003. So in essence you are seeing the progression of Mattie at Halloween in this composition. All the other photos surrounding these central photos, are other Halloween photos of Mattie throughout the years.  


Quote of the day: The meaning of life is to find your gift. The purpose of life is to give it away. ~ William Shakespeare


Yesterday while attending an International childhood cancer conference, I heard mention of the fact that childhood cancer survivors experience aging at a faster rate than their non-cancer peers. This nugget of knowledge stayed with me all day until I decided to look up the research study that addressed this premature aging finding. Clearly, premature aging has great consequences on one's physical health and longevity of life.

Can you imagine managing this as a parent, and having to help an adult child cope with these bodily changes? Some of these adults were so young when they were diagnosed that they do not even remember their cancer journey. Yet their cancer can never be forgotten, even if they have no memory of the treatment. The problem with childhood cancer is that toxic medications are given to developing bodies and minds, unlike with adults, therefore children are more likely to deal with many long term effects from the treatment (e.g., heart issues, diabetes, secondary cancers, infertility, high blood pressure, hearing loss, eating disorders, addiction, depression, anxiety, ADHD, etc). When you think about all these chronic and life threatening issues that can arise in adulthood, it shouldn't be that surprising then that the body ages from all these stresses. 

Below are the specifics on the survivorship study on aging. I think you will find this enlightening, and yet like many aspects of childhood cancer, this too is not typically discussed. Yet like I always say..... the psychosocial issues do not end when the treatment does. Here is yet another example. 

St. Jude (located in Tennessee) is the coordinating center for the Childhood Cancer Survivor Study (CCSS). This multi-institutional collaboration is the world’s single largest resource for survivorship research. The data from this large study indicates that young adults who survived childhood cancer are more likely than their peers to be frail. Researchers also found that frail health was associated with a greater risk for adult childhood cancer survivors of death and chronic disease. 

Being frail was defined by the presence of at least three of the following – weakness, self-reported exhaustion, physical inactivity, low muscle mass and slow walking speed. In the general population, being frail is most commonly associated with advancing age.

In this study of 1,922 childhood cancer survivors, 13.1 percent of women and 2.7 percent of men qualified as frail despite having an average age of less than 34 years old. In a comparison group of 341 young adults with an average age of 29 years old and no history of childhood cancer, none qualified as frail. Nationally, an estimated 9.6 percent of women age 65 and older and 5.2 percent of men in the same age group meet the definition. The unexpectedly high prevalence of frailty among childhood cancer survivors suggests accelerated aging.

Adult Survivors of Childhood Cancer Article:

https://www.stjude.org/media-resources/news-releases/2013-medicine-science-news/adult-survivors-of-childhood-cancer-at-risk-of-becoming-frail-at-an-early-age.html

Thursday, October 12, 2017

Thursday, October 12, 2017

Tonight's picture was taken in October of 2008. Mattie was in the hospital managing treatment and that evening was a music night. I naturally can tell because our incredible musical duo of volunteers allowed Mattie to play with their keyboard. Jerry and Nancy were volunteers we met during Mattie's first week of chemotherapy. In fact, they showed up at a time when we really needed to forget our troubles and sing a long. They always came in the evening hours after work, so Peter got to experience their fun and antics. In fact, they were so fond of Mattie that they donated a keyboard to him while he was battling cancer. Of course after Mattie died, I donated it to the hospital so other children could experience the power and gift of music. To this day, Peter and I meet up with Jerry and Nancy for dinner on a periodic basis. I will never forget their kindness, good spirit, and games they played with Mattie. They always played a 'name that tune' game with Mattie. However, Jerry would email me before their visit to make sure whatever songs we was planning on playing, Mattie could identify. Speaks to his character, no?


Quote of the day: To say nothing is saying something. You must denounce things you are against or one might believe that you support things you really do not. ~ Germany Kent

Today we attended the Pediatric Psycho-oncology track at the SIOP conference in Washington, DC. The International Society of Paediatric Oncology (SIOP) was founded in the late 1960’s.  SIOP has over 1000 members worldwide including doctors, nurses, other health-care professionals, scientists and other researchers. 

SIOP is an interesting conference because at least two or three conferences are going on simultaneously. The majority of attendees are oncologists, and most of the sessions are medically related. However, the other two components are a parent track and a mental health track. The problem however with all of this is the three tracks don't necessarily interact with each other and hear one another's perspectives. The doctors stays with the doctors, the parents with the parents, and the mental health folks with the mental health folks. 

I attended two sessions in the morning. I frankly did not go in with the mindset of challenging anyone. After all, in this audience I am not the clinician, just the parent. But in some cases, as tonight's quote points out..... you can't stay silent. 

One researcher presented her study on the long term fate of parents, parents of children who survived cancer. She was very clear that soon after treatment ends these parents return to normal, or in some cases better than normal. Meaning in comparison to parents of healthy children, these parents reported lower mental health concerns. That was deeply troubling to me, since this has NOT been my experience with any parents of a survivor that I have talked to, throughout the Country! 

But then she presented socio-economic data, and this bar graph. She wanted to let us know that she looked at employment status of mothers and fathers, both those with healthy children and those who had a child cancer survivor. Overall, the employment situation of parents of survivors was significantly different from control parents. In both populations the majority of mothers was employed part-time. However, overall, more mothers of survivors were not employed compared to control mothers. 

She truly had no comprehensive way to explain this other than perhaps it is because Switzerland (where the study was conducted) doesn't have medical leave policies like we do in the USA. When it came time to ask her questions, I couldn't help myself. To me there were so many blaring issues. So I first told her that I couldn't understand her data which indicated that the trauma experienced by parents is not significant at predicting issues into the future. That I was perplexed by what she was reporting, given our practical experience working with families. This is NOT what we are seeing and hearing. But then I asked her whether she thought there was a psychosocial link as to why mothers of childhood cancer survivors couldn't go back to work when treatment ended. To me this is a no brainer. She couldn't accept what I was saying, as she was adamant that psychosocial issues aren't a factor and also dissipate over time for parents of survivors. She lost me and the more I kept at her the more she pushed back at me. Mind you this discussion was in front of an entire audience of researchers/clinicians.

When I removed myself from the microphone, two other parents stood up and wholeheartedly agreed with me and also challenged her. During the break, we convened and the parents really thanked me for standing up and speaking the reality. It is my hope that this researcher has learned one important lesson from this. The lesson is it is always important to run her findings passed parents, or at least be open to possibilities in her interpretation of the findings. 

At 12:45pm today we presented an hour long panel presentation on the implementation of the Psychosocial Standards of Care. I had five minutes to explain why we had this vision to create the Standards. To me it was a blur, but Peter taped a part of it and he said I was poignant and spot on! But he's biased!

Peter did a great job capturing some highlights of the presentation!

Interesting that the backdrop is gold. Clearly by happenstance, but gold is the official color of childhood cancer. 

The audience listening to our presentation!

Wednesday, October 11, 2017

Wednesday, October 11, 2017

Tonight's picture was taken in October of 2008. Mattie was in the outpatient clinic, at the art table. But of course! Mattie and his art therapists had been working on a "haunted house" for several weeks, as Mattie wanted to decorate for Halloween. The house originated from a simple cardboard box that he decided to transform. With each visit to the clinic, more was added to the box. It was actually quite intricate, because inside the box was very spooky. Just like you would expected from a haunted house. On the outside Mattie created a witch and several ghosts flying over head. We had this cardboard house for the longest time and I am so happy we photographed it. 



Quote of the day: There can be no deep disappointment where there is not deep love. ~ Martin Luther King, Jr.

I think Martin Luther King, Jr., captured my feelings about October. Naturally his quote has nothing to do with breast cancer or the month of October. But to me the sentiments of his quote capture what is in my heart. For those of you who do not know (though with the pink campaign, it would be hard to NOT know), October is national breast cancer month. Clearly I think cancer of any type and at any age is horrific. I am aware of the magnitude of breast cancer, how many woman are diagnosed, and impacted. I have several friends who are either battling or battled this disease. So do not take my next statement the wrong way..... but I am always perplexed why childhood cancer doesn't get as much attention as breast cancer. Few people know that September is childhood cancer awareness month and that the official color for children is gold. Because they are golden to us! But why is that? Of course there are many reasons for example.... fewer children get cancer each year than women (though 16,000 children a year sounds like a lot to me), childhood cancer is a subject no one wants to hear or talk about, and the pharmaceutical industry really has no incentive to produce drugs for children (since their audience who needs them is much smaller in children than adults). 

Today, I went to the salon to get my nails done. I visit this salon frequently. I am aware of the fact that the salon gets involved in philanthropic causes and recently they sent out a mass email to all their clients letting them know about their upcoming breast cancer fundraiser. All great! Today while checking out of the salon, the two young women behind the counter inquired whether I was going to make an appointment and support their breast cancer fundraiser day. Literally my response was 'NO!' I explained that I value their cause and hope it is a successful event, but that my focus and support goes to children with cancer. They just looked at me! They honestly did not know children get cancer, much less that 4 to 5 children die each day from cancer in the US. But what sent them over the edge was that I told them that my quest to support children with cancer was personal, since my son had cancer and died. When I tell you these women looked like they were hit by a train, I am not kidding. They both started tearing up and they couldn't speak a word to me. My intention was not to disrupt their day, but my intention was to educate them that not only women get cancer and need our support. 

So back to Dr. King's quote. I get upset about October and seeing pink to some extent because of my deep love of Mattie. If I did not experience childhood cancer for myself and lose Mattie, would I still have this same disappointment about October? Unfortunately the answer is no. I can't get upset at others because I know that I potentially would be just like them, clueless. I long for clueless and wish I did not know children get cancer and die. Nonetheless,  I see growth in my reaction. Years ago I had a visceral reaction to seeing pink awareness. But now I feel internally it is possible to acknowledge both without negating the other. Well at least in theory. 

Tuesday, October 10, 2017

Tuesday, October 10, 2017 -- Mattie died 421 weeks ago today. 

Tonight's picture was taken on October 10, 2009, the day of Mattie's funeral and celebration of life event. After Mattie's funeral, hundreds of people walked from the church up the block to the Visitation School. Thanks to one of our friends who is a graduate of the school as well as a board member, the School opened one of its beautiful buildings for us to host a celebration of life ceremony, to display many of Mattie's art pieces, to have a luncheon, and a dedicated room for Mattie's friends to gather, create and have a balloon release. I can't tell you how many photos, pieces of art, and other objects that were on display at this event. Thankfully I had help putting this event together, which was why we waited a month after Mattie's death to host this meaningful day. 

Quote of the day: Ever has it been that love knows not its own depth until the hour of separation. ~ Kahil Gilbran


It is hard to believe that 8 years ago today was Mattie's funeral and celebration of life event. I went back to the blog in 2009, and realized I did not post many photos of Mattie's celebration of life event. But one thing was very clear, hundreds of people attended Mattie's funeral and event. I copied the posting I wrote in 2009 below. I think it is worth reading, I know I appreciated reflecting upon it. One thing that caught my attention is that I wrote: "I had many questions asked of me, as to whether I would continue writing the blog. As I said before I would write up until Mattie's funeral. I am not sure how I feel about this now, and will continue until I have determined I can't do this any more. A part of me feels by writing each day, I force Mattie's memory to be ever present and therefore to never die. Of course I realized whether I write now or not, his legacy will continue on to some extent. But until I can assure his legacy with an effectively functioning Foundation, I most likely will keep writing."

Can you believe this? At one point I thought I was going to stop writing the blog after Mattie's death! I know I have toyed with this notion many times since then, but for nine years, I write this blog daily. It is a labor of love. I would say that my thoughts and feelings have evolved over the years, but at the end of the day the fear is still the same. Time has not erased that..... I write because I don't want to forget Mattie. What a commentary for a parent to have to write. 


Blog posting from the day of Mattie's funeral (October 10, 2009): 

I can confidently say that Mattie had a beautiful funeral mass, reception, and celebration of life ceremony today. I know he was looking down upon us and was smiling. He was smiling for many reasons, I am sure he was beaming over the fact that people were appreciating his art work and creativity, and most likely because he could see just how many people united together and formed a solid community. This community helped us through the past 13 months, through this emotionally laddened day, and I have no doubt some of you will be there as a continued force into our uncertain future.

 

It is after midnight, and I am not thinking as clearly as usual. I am exhausted physically and emotionally, and therefore plan on making this short tonight, in hopes that having another day to reflect on today, will make whatever I say tomorrow more insightful. If that is at all possible. One thing I do want to say is that we are SO grateful to Team Mattie for helping us plan, coordinate, and execute our dreams and desires for today's event. You far exceeded my expectations, and having you all in our lives is a blessing beyond measurable proportion. Mattie's art work was exquisitely displayed, and when I saw it filling each and every room, I took great pride in his works and appreciated the importance of art in his life this year.

We want to thank all of you for coming or sending us messages today. Your presence made today possible, and several of you assured me you would never forget Mattie. I had many questions about whether I would continue writing the blog as well. As I said before I would write up until Mattie's funeral. I am not sure how I feel about this now, and will continue until I have determined I can't do this any more. A part of me feels by writing each day, I force Mattie's memory to be ever present and therefore to never die. Of course I realized whether I write now or not, his legacy will continue on to some extent. But until I can assure his legacy with an effectively functioning Foundation, I most likely will keep writing.

The day couldn't have been more special. Every part of it was memorable, and seeing the children sing a self created song for Mattie was touching, along with their red balloon release with messages attached for Mattie to read in heaven! What a sight that was, and I will never forget any of this. None the less, even after a mass, talking to several hundred people, hearing tributes to Mattie, and being surrounded by amazing love and support, I still tonight feel so empty, so alone, and so directionless. I actually don't feel much these days, I can't cry, and I move from one task to another. Despite not feeling, I do know on some level I am profoundly changed and I miss everything about Mattie in our life.

I am signing off tonight out of sheer exhaustion, but I would like to end with a message I received.

This message is from one of Ann's neighbors who I met at a picnic in the spring. Karen wrote, "I have started and re-started this email several times in the month since Mattie passed away. I worried that you would think it strange that someone who does not know you or Mattie would write an email to share her sympathy. But as you have already heard from many others, Mattie's life and his battle against cancer have been in my thoughts so much these last few months, so I wanted to let you know a few things. First, though I never met him, I will not forget Mattie. When reading your blog, it always struck me that Mattie was able to keep his sense of humor, his inquisitiveness, and his sense of self through incredible pain and through situations most adults would struggle to endure. It is truly amazing. I have two boys, and when I look at them I sometimes wonder about Mattie and how someone so young was able to have the strength and spirit to fight the way he did. He was clearly an exceptional boy, and I know it is because he has exceptional parents. Which leads to me to my second point - what a profoundly generous thing it is for you and Peter to share your journey through your blog. As I said before to you, I have several friends who haven't met you but who have followed Mattie's battle. All of us have been deeply affected by his fight and his death, and while we are sad, I also know that it has been a lesson. While I believe (hope?) that all parents love their children, your complete love and devotion to Mattie, and how you were able to fight for him so fiercely despite being exhausted and being faced with unimaginable pain, struck everyone I know who reads your blog. Something brought this home to me the other day. I had to take my 2-year-old to the ER for stitches after he hit his head on a table. He was fine, and I knew he would be fine, but it was a pretty hairy 30 minutes when they strapped him down to a board to start doing the stitches on the back of his head. He was hysterical. After they finished and I was comforting him, I thought - how did the Browns do this every day for over a year without being able to tell their child or know that everything would be "fine" in a half-hour? And it led me to this. Mattie was able to do it because he knew that his parents loved him without limit, and his confidence in that gave him the strength and courage to keep battling cancer. I am grateful to you and Peter for sharing Mattie's life and for allowing me to know him."

Monday, October 9, 2017

Monday, October 9, 2017

Tonight's picture was taken in July of 2009. This was before we knew that Mattie's cancer status was terminal. That day Mattie was at clinic receiving his experimental treatment. While waiting around, Mattie naturally gravitated to the art table. As you can see he had a ton of supplies in front of him. Which was typical for Mattie. Next to Mattie was Katie (one of his outstanding HEM/ONC nurses) and Jocelyn (his buddy who also had osteosarcoma). Both Mattie and Jocelyn lost their battle to osteosarcoma. Mattie died at age 7, and Jocelyn at age 31. Despite the age difference, they were good friends and I very much appreciated Jocelyn's presence around Mattie, because he felt that she truly understood how he felt. 


Quote of the day: Walking alone is not difficult but when we have walked a mile worth a thousand years with someone then coming back alone is what is difficult. ~ Faraaz Kazi

Tonight's quote is spot on! The sentiments of the quote take me back to the day Mattie died at the hospital. I can still remember the feeling of entering the hospital as a family of three and then several days later after Mattie died we left for home as only two. Peter and I walked a journey with Mattie for seven years and certainly there were times as a parent when you feel alone. However, the isolation and feelings of being alone are magnified ten fold when you lose a child to cancer. We know what it was like to walk alongside our child, and now we have had to figure out a way to walk without him.

The reality of our loss is ever present, but when other losses occur, these deaths bring to the surface all our painful feelings. Around Mattie's birthday in 2014, Peter and I went to Florida. We always travel on Mattie's birthday, mainly because no one is going to celebrate his birthday with us, and instead of dealing with the emotions that evoke, we leave town. While on our trip, I received a phone call two days before Mattie's birthday. The call was from Jocelyn's mom, Laurie. Laurie wanted me to know that Jocelyn died and lost her battle to osteosarcoma. Needless to say I was shocked. Shocked because I did not realize Jocelyn's situation was terminal and second, Mattie loved Jocelyn and considered her a wonderful buddy in cancer. In this photo, you see a card that is propped up next to my desk lamp. This card was given to all of us at Jocelyn's celebration of life service. I look at that card daily. While at this service in 2014, Laurie (Jocelyn's mom) told me she was diagnosed with leukemia. This weekend, we learned that Laurie lost her battle. So now Jocelyn's family has lost Jocelyn and Laurie to cancer.

I naturally knew Jocelyn better than Laurie. As I saw Jocelyn often in clinic and she and Mattie had a beautiful friendship. I will never forget when Jocelyn tried to normalize Mattie's fears about his first limb salvaging surgery. No one could have done it better. She had a way of taking something so serious and making light of it. For example, she knew Mattie was scared about his surgery. Unlike Mattie, Jocelyn's leg was amputated. But Mattie did not realize that until Jocelyn popped her prosthetic off. You might think that was scary, but she made it is humorous and as a result Mattie began to see that even if something happened to his leg, he would be able to function.... after all look at Jocelyn. 

One day while in the clinic, Laurie came with Jocelyn for her infusion. So I had the opportunity to meet Laurie. Since the clinic was small, it would be impossible not to observe one another, and apparently Laurie was able to watch Mattie and me interact. The next time I was in clinic, Jocelyn came up to me and handed me a gift bag. The gift was from her mom to me. She said her mom wanted me to know that she thought about me and wanted me to know I was loved. The gift she gave me was this lime green mug from Starbuck's in the photo above. I still have and use this mug today. It always reminded me of our time together in the clinic, and how Jocelyn's mom and I shared a common bond... the loss of our children. I am saddened to know that the giver of this mug is no longer alive with me. For me, Mattie's death is so intertwined with Jocelyn's and now Laurie's.

This is a photo of Jocelyn's youngest sister, Hannah, with Laurie (her mom).

A photo of Laurie with her two surviving daughters and her grandson. 

Sunday, October 8, 2017

Sunday, October 8, 2017

Tonight's picture was taken in September of 2008. Mattie was a month into treatment. On this particular occasion, Mattie was home between treatments and his good friend, Zachary, came over to visit. In preschool, Mattie and Zachary were inseparable and were the closest of friends. Though they went to different elementary schools, they still remained close with each other. Their special bond was not something that could be broken by geographical distance or even cancer. Zachary remained a true friend to Mattie throughout his battle. That day, Mattie took out his remote controlled boats, threw them into his kiddie pool, and decided to play. Zachary learned over time what activities Mattie could and couldn't do, and truly accommodated Mattie's needs. This is noteworthy to mention, because prior to cancer, Mattie and Zachary were very energized, ran around, and were physically active. After Mattie was diagnosed with cancer, his ability to do what he once did, was severely limited. Yet these friends found a way to continue playing. 

Quote of the day: I’m not worried that you’ll be successful. I’m worried that you won’t fail from time to time. The person who gets up off the canvas and keeps growing, that’s the person that will continue to grow their influence. ~ Rick Rigsby

Today I received an email from one of my friends who also happens to be a former graduate school student of mine. She sent me a video that was entitled.... an amazing video. I clicked on the link (which I attached below) and watched this nine minute long video by Rick Rigsby. I had no idea who Mr. Rigsby was other than a man standing before me with his doctoral cap and gown, giving what appeared to be a commencement speech. Yet it was no commencement speech I have ever heard. In nine minutes he took you on an emotional roller coaster of highs and lows, but at the end of the day with a moral message..... How am I living? Meaning what principles guide your life, keep you going, interacting with the world, and moving forward. It is actually the perfect speech to give graduating students.... who may feel they have learned all they need to know to be successful in life. As Rigsby point out, this is clearly NOT so, because life is always about learning new lessons and being open to them in order to grow and thrive. 

So who is Rick Rigsby? He is President and CEO of Rick Rigsby Communications. Through motivational speaking, corporate coaching, books and social media outlets, Rick encourages and empowers audience members to become great people who do great things. The San Francisco native is a former award-winning journalist, who followed a television news career with six years of graduate school—culminating with a Ph.D. from the University of Oregon. A college professor for two decades, Rick spent most of those years at Texas A&M University, where he also served as character coach and chaplain for the Aggies football team.

When you hear Rigsby talk, you can hear the coach and the minister in him. He delivers a powerful punch in a very humorous, sometimes serious, but poignant manner. What intrigued me about his talk was his discussion of loss and how this nightmare influenced him and became a part of his life. It seems that he was telling us that when you hit rock bottom, it forces and tests your courage, strength, and determination as a human being. As his dad shared with him, three little words... Keep On Standing! Some days, just trying to stand, is about all that can be accomplished. His dad could have said... I love you, your wife loved you, you carry your wife's memory in your heart, or something else that would be equally trite. But when dealing with a crisis and trauma, trite doesn't cut it. You need to go back to the physical basics. Which is why.... Keep on Standing, resonated with me. It's a nine minute speech worth listening to!

The wisdom of a third grade drop out will change your life:

https://www.youtube.com/watch?v=lRa0iqKZMvk