Monday, October 22, 2018

Monday, October 22, 2018

Tonight's picture was taken in October of 2004. Mattie was two and half years old and we took him to his first Fall Festival. Mattie disliked crowds and noise. We knew that from the beginning when he was a baby. So there were aspects of the community festivals that he did not like. However, Mattie enjoyed being outside, seeing, and picking pumpkins.


Quote of the day: The more you know who you are, and what you want, the less you let things upset you. ~ Stephanie Perkins


Though I love tonight's quote, I can't say this applies to me. As little things can upset me and then set me off for the rest of the day. I started my day with physical therapy. I think my therapist is making headway with me, but she is younger than me and is still dating her significant other. Today she was telling me about her long term boyfriend and how they are planning on getting married. Naturally I am happy for her, but then she tells me they have plotted out their life..... such as by having three children together, this gives me pause. I of course listened, but in the back of my mind, all I could think of is..... well sometimes (or most times) life does not go according to plan. What we may want doesn't mean we will get it. Childhood cancer has been the ultimate reality check for me. Of course I did not say anything to her nor do I when people all around me talk about the future. Especially when it relates to their children. To me, having a healthy child doesn't always mean the child will remain like this! I hate to say this but this dialogue is twirling around in the back of my mind whenever I see a pregnant mom now. 

On another note, I have been working with another non-profit in Virginia to include psychosocial language in the State's cancer plan. We have been working at this for two years. Finally today, I got a copy of the plan. I am thrilled to see the Psychosocial Standards of Care are listed as Goal #11 (on page 48). The goal states..... By 2022, all pediatric cancer treatment centers will commit to meeting the Psychosocial Standards of Care for Pediatric Oncology.

The 2018-2022 Virginia Cancer Plan provides a road map for the next five years to help Virginia residents address the burden of cancer. The plan provides data, guidance, information, and links to resources for all Virginians. The goals of the plan can be addressed throughout the Commonwealth of Virginia and require the engagement and collaboration of individuals and organizations
involved in cancer prevention, detection, treatment, and post treatment care for Virginia residents. Now if every other state could follow suit!!!!


Virginia State Cancer Plan Overview:

http://cancercoalitionofvirginia.org/pages/cacv-annual-reports.php


Virginia State Cancer Plan (p.48):
http://cancercoalitionofvirginia.org/PDFs/About/6655-VA-cancer-plan_2018_2022.pdf

Sunday, October 21, 2018

Sunday, October 21, 2018

Tonight's picture was taken in October of 2008. Mattie was home recovering from his first limb salvaging surgery. Despite how awful he felt, he was still getting into the spirit of Halloween. A former neighbor of ours gave us this wonderful witches hat and as you can see Mattie decided to wearing it that day. 



Quote of the day: In every walk in with nature one receives far more than he seeks. ~ John Muir

We wanted to visit Mattie's tree today to plant bulbs around it. However, before doing this, Peter ran some chores in Alexandria and dropped me off at one of my favorite private school campuses to walk Sunny. 

Episcopal High School is a private boarding school in Alexandria and whenever I step on its campus, I feel two things.... like I am back in college and that I am surrounded by greenery. No cars or traffic and it is peaceful. I absolutely LOVE walking Sunny on their campus, and Sunny is also thrilled as he loves chasing the squirrels and chipmunks. Despite walking on this campus many times, today, Sunny found a wonderful nature trail that is on the school's property. It was a total surprise to me and found totally by happenstance. So between the campus itself and its nature trail, this has to be one of my favorite local walking spots with Sunny. 

Sunny stood guard while we were digging and planting around Mattie's tree. While I was walking Sunny, Peter bought planting dirt and mulch at Home Depot. Together we planted hundreds of bulbs around the tree. In the Spring, daffodils, crocus, and spiranax will be in bloom. It is a sight to see because none of the other trees on campus have bulbs around them, making this tree stand out and be extra special. 

While we were planting, one of the teachers at Mattie's school drove in and then walked over to talk with us. She told us how special the tree is to the school and how the children love to see it decorated. She mentioned she missed our wind chime on the tree. Our last wind chime got destroyed in a wind storm. But I told her to never fear, as I am on the look out for the right chime. After all, this can't be a twinkling tree without a chime. 

Though Mattie never had this particular teacher, I remember her well, as I interacted with her everyday on the school car pick up line. In a way it seems like a long time ago or another lifetime. Which is what I would say happens with a traumatic loss. There is a before and an after, and as such there was a Vicki before cancer and now what appears to be Vicki, but actually I'm very different. Or at least I feel that way on the inside. 

Saturday, October 20, 2018

Saturday, October 20, 2018

Tonight's picture was taken in January of 2009. We took Mattie up to NYC to start his immunotherapy treatment at Memorial Sloan Kettering. In between doctor appointments and infusions of medicine and fluids, we took Mattie around town. One of the things we did was visit the top of the Empire State Building. This was something NONE of us had ever done before and most likely will not have the opportunity to do again. I will never forget that day because there were no lines or crowds. It was the perfect day to tour the building and all the elevator operators were extremely nice with Mattie.



Quote of the day: Our life is frittered away by detail. Simplify, simplify. ~ Henry David Thoreau


On Monday, my parents will be flying into Washington, DC. They don't normally visit during the cold weather season, but my mom is getting inducted into her school's Faculty Hall of Honors. In fact, this is an inaugural event, as she and 20 other teachers will be the first to be recognized. Such a special event needs to be recognized, so I encouraged my parents to attend and I will go with them. Needless to say we have a long car trip ahead of us on Tuesday, and I will be doing the driving. That might not sound bad, but I am directionally challenged even in my own city. Now I will be crossing multiple state lines. 

It was a busy day and it is 10pm! I am still working, as I try to balance Foundation needs, and all the coordination and planning needed for our trip. So I am signing off for tonight.... until tomorrow. 

Friday, October 19, 2018

Friday, October 19, 2018

Tonight's picture was taken in October of 2008. I can remember this day very vividly. Mattie was eager to spend time in the child life playroom. While there, Linda (his child life specialist) asked Mattie if he wanted anything particular to play with or work on. Mattie requested model magic, which is like clay or playdoh, just cleaner and it dries beautifully. Mattie created a seascape using a big piece of paper. He painted it and then started building a model magic bridge and sea creatures floating all around. I don't know if you can see it clearly, but lined up on the model magic bridge were hotwheel cars. Needless to say, I think I have one of these model magic sea creatures still on display in Mattie's bedroom. 


Quote of the day: A true leader has the confidence to stand alone, the courage to make tough decisions, and the compassion to listen to the needs of others. He does not set out to be a leader, but becomes one by the equality of his actions and the integrity of his intent. ~ Douglas MacArthur

In 2000, two years before Mattie was born, I was elected to be the president-elect of the DC Mental Health Counselors Association (DCMHCA). Together Peter and I developed this logo for the Association, a logo that is still being used today! DCMHCA is a state chapter of our parent association, the American Mental Health Counselors Association (AMHCA). AMHCA is a national professional association representing the educational, training, and advocacy needs of clinical mental health counselors. AMHCA's membership is over 7,000 professionals. 

Joining professional associations was impressed upon us in graduate school. So I got involved early on. In 2000, I was still trying to complete my doctoral program, yet because of my level of activity in the Association, I was elected to be president elect. The way it goes in an Association is you become president-elect, then president, and finally past-president. So it is a three year commitment. In 2003, when my commitment was over, the leadership of the board did not want to see me go. Keep in mind by that time, Mattie was born and I was juggling him full time, teaching part time, and other professional commitments on the side. Yet, I agreed to stay on and the board appointed me the executive director of DCMHCA. I remained in that role until the day Mattie was diagnosed. Then like many of my professional commitments, I dropped them immediately. 

Because of my extensive work with DCMHCA on the local level, I was making a name for myself on the National level. So in July of 2007, I was elected the president-elect of AMHCA. I was the youngest person ever elected to be president of that organization. It was a busy year for me that culminated in the planning of a national conference in San Diego, CA. I will never forget how successful that conference was, and the blood, sweat, and tears I put into it. I was stunned that the Association got me a huge suite at the conference hotel. It had two bedrooms, two bathrooms, a kitchen, and a living room. All with balconies. I remember snapping this photo one early morning. Meanwhile, I would call home every day to check up on Peter and see how Mattie was feeling. I knew Mattie's arm was bothering him for a week before I left for San Diego. I wasn't happy with Peter's reports and I told him as soon as I got home, I was taking Mattie in to see the pediatrician. Which I did and of course learned Mattie had osteosarcoma.

I was the president of this 7,000 member organization, but I never was able to fulfill my position because I was caring for Mattie in the hospital. The Association did not want me to step down as President, but they also did not want me to come clean with membership and tell them what I was balancing. I was saddened by that reality, but frankly given all that I was dealing with, I really did not care!

Why am I walking down memory lane? Because today, out of the blue, I had an hour long conversation with a board member of DCMHCA. She called me because she told me the organization hasn't run effectively or smoothly since it lost its executive director. Cute way of saying.... me! As the Association never got a replacement once I left. I could see why, as the position was time consuming both administratively and logistically. Yet 18 years later apparently my work is still being talked about and I was asked to come back as a consultant to help the board get back on its feet. I am not going into more detail here because of the nature of some of the issues. But I have to say this is a part of my life that I almost forgot. As it seems like this was a different Vicki back then, who lived a totally different life. Yet all of these leadership experiences popped right back into my head with just this phone call today. I feel grateful in a way, because some people never learn the impact they made on others. Today I got to hear about it first hand. 

Thursday, October 18, 2018

Thursday, October 18, 2018

Tonight's picture was taken in October of 2008. Mattie was in the outpatient clinic and diligently working on the creation of a haunted house. I am telling you he worked weeks on transforming a simple packing box to something creepy for Halloween. We were in Mattie's second month of treatment, and by that point, all the psychosocial staff knew to save cardboard boxes for Mattie. He loved to create and build with them. This haunted house was intricate, because it had an inside, filled with cobwebs, witches, ghosts and goblins! Mattie was holding a wicked witch in his hand to illustrate what was going on inside the house!


Quote of the day: A bad neighbor is a misfortune, as much as a good one is a great blessing. ~ Hesiod

It is rather ironic that yesterday I had a bad neighbor story and today by happenstance, I have a good neighbor story. I was in our complex's garage today, filling up my wheeled cart with grocery bags. It seemed that I had more bags than the cart could hold. While I was unloading the car, my neighbor and his brother came into the garage and noticed me. My neighbor, who has special needs, immediately came over to me and offered to help. Not only offered but he started carrying things for me. I have known this family for almost two decades now, they knew us when Mattie was alive and running around our complex. Though my neighbor has special needs, do not think this limits him in his understanding of our situation or the sadness this brings about in our lives. In fact, he is the one person who ALWAYS brings Mattie up to me and tells me he is sorry for my loss, because he thinks I am a great mom. The average person isn't mature enough to say this...... we have a lot to learn from our friends with special needs. 

Later today, a friend of mine tagged me in LinkedIn and suggested I read the article entitled, Grief Counselor. I have to admit that for the most part, things I read on grief set me off. Especially if they provide LISTS or how to's! This article was different as it was written from the perspective of a grief counselor. 

I concur with the majority of sentiments in the article. Society can't tolerate grief, loss, sadness, and pain. On an aside, I think the notion of the one year anniversary of a death needs to be removed from our lexicon. Because I really believe people think the calendar flips over, and we then magically return back to 'normal.' It doesn't happen that way, which is why friends and family don't know how to help us in the long term. Also explaining why the need for grief counselors is abundant. 

Grief counselors are special people and I believe the profession chooses them and not the other way around. It isn't easy to hear, sit, and walk through someone's grief journey with them. Mainly because it involves a lot of telling, retelling, and more retelling of stories and memories. It is a process, that I see lasts a lifetime. 

Having lost my only child to cancer, I can't say that I agree with the last paragraph of the article. It implies that death is "life-affirming.  It is our gateway to meaningful and vigorous life." Certainly I have learned a great deal from Mattie's death, so much so that I created a Foundation to address the psychosocial inadequacies in care! But at the end of the day, I could have come up with a more life affirming plan for myself...... a plan that wasn't the result of a parent's worst nightmare.


The Grief Counselor:

https://reaginsberg.weebly.com/weblog/the-grief-counselor

Wednesday, October 17, 2018

Wednesday, October 17, 2018

Tonight's picture was taken in October of 2007. Our Facebook friend, Tim, created this artistic presentation, incorporating Mattie's photo, and sent it to us today. I always look forward to Tim's surprises and though he lives out West and I have never met him, I appreciate how he helps us keep Mattie's memory alive. Tim seems to know just when a photo memory is needed, and it is a gift to get it out of the blue. 


Quote of the day: Time is not a cure for chronic pain, but it can be crucial for improvement. It takes time to change, to recover, and to make progress. ~ A Day Without Pain


I haven't been talking about my hip pain, but that doesn't mean I don't have pain. If I talked each day about my headaches, this would be a boring blog. Like the headaches, the hip problem is also chronic. I have been wondering why I am so exhausted lately. Then I thought about it..... it is pain. It prevents me from sleeping well, and then just walking around each day with constant pain is debilitating.  I want to say that the cortisone shot helped my labral hip tear, but in the process of managing that pain, new ones have presented themselves. My physical therapist is educating me about the fact that I have significant muscular issues, most likely caused from imbalances that resulted from hip pain. 

At first I thought the therapist was wrong.... how could such significant pain be from muscles? But given that I have been dealing with hip pain for months, this affected how I walked and moved, and therefore impacted my muscles. Literally she just has to touch my right leg and every muscle hurts. However, she feels we can work on these muscles with exercises and physical manipulations. 

I have learned that the thigh has three sets of strong muscles: the hamstring muscles in the back of the thigh, the quadriceps muscles in the front, and the adductor muscles on the inside. The quadriceps muscles and hamstring muscles work together to straighten (extend) and bend (flex) the leg. The adductor muscles pull the legs together.

My issues are in the quadriceps muscles at the front of the thigh and the adductor muscles. It is so bad that I am literally rolling tennis balls on my muscles to try to break down the knots. 

Meanwhile, I have a truly unstable neighbor. She lives above me. She can't stand me or Sunny. It is very clear that this woman has cynophobia, a fear of dogs. As a therapist at heart, I have empathy for her and I realize she must of had an early traumatic experience with a dog, such as being bitten or witnessing a family member being attacked. Nonetheless, she is absolutely irrational and I can't get through to her when she freaks out. 

Today, I was literally walking Sunny on a leash and coming out of a door to the outside of our complex. Unfortunately I was coming out and this woman was coming in. I have experienced her hysteria before, which is why when I see her, I try to give her a wide berth from Sunny. Today she caught me by surprise, so I was unable to back away. When she saw Sunny, she jumped in the air about a foot. Then began screaming at me. She told me dogs aren't allowed in our complex, that I should be evicted, and the list of unpleasantries continued. She told me she was going to talk to management about us. Literally I couldn't get a word in edgewise, she was just bombarding me with words and venom. She is lucky I am a stable person, because if she tried this on someone else, I literally could see this going very badly. 

Needless to say, after I walked Sunny I went to talk to our management. Keep in mind that before getting Sunny, I applied to our management to get approval to adopt Sunny. The adoption agency even spoke to our management company before signing Sunny over to us. So we are covered, but I wanted to alert our complex to this woman because I believe her goal is to make trouble for us and other neighbors who own dogs. 

Ironically Sunny is a gentle giant and I am saddened that I can't reach her to take a deep breath and learn that not all dogs are mean, vicious, or dangerous. 

Tuesday, October 16, 2018

Tuesday, October 16, 2018 -- Mattie died 474 weeks ago today.

Tonight's picture was taken in October of 2008. I know exactly what was happening here. Mattie was in the outpatient clinic recovering from sedation. Sedation he received in order to undergo an hour long MRI. How they expect a child Mattie's age to endure an MRI without sedation was beyond me. Though sedation made a huge difference in Mattie's life, Mattie did not wake up well from sedation. He would wake up screaming and agitated. Which was why our sedation nurse angel, Debbi, learned that she had to pump an anxiety med through his IV as he was waking up in order to transition Mattie slowly. This photo was taken after receiving Versed (the anxiety med). Mattie started coloring in the book Linda, his child life specialist, brought for him. Though I got used to seeing Mattie very pale and with no hair, something about this sight will never be normal or natural to me.


Quote of the day: I think we all have empathy. We may not have enough courage to display it. ~ Maya Angelou


The other day, a cancer advocate tagged me on Facebook. Those who know me well, know I do not spend a lot of time on Facebook. It is just not a platform that resonates with me, plus I think the only things that really get attention on Facebook are happy or outlandish things. Therefore, if you want me to read something and comment.... you need to tag me. 

So I went onto Facebook to read the post. In a nutshell, I was introduced to a mom whose daughter is now a cancer survivor. Sounds great right? Well in theory this is what we all hope for, but survivorship is no picnic for children. Cancer treatment leaves long term, chronic, and in some cases life threatening consequences. But these consequences are not well publicized and most certainly aren't on the radar scope of the average person unaffected by cancer. To an outsider, a survivor is CURED and will be able to live a normal life. Both wrong! I remember early on one of Mattie' oncologists told me to remove the word 'cure/cured' from my lexicon. She said once you have childhood cancer, it is a part of your life and the best you can hope for is having no evidence of disease for a period of time. That's sobering no? 

Back to the mom on Facebook. She is happy her daughter is a survivor but what she wasn't prepared for are the psychosocial consequences on her daughter and therefore her family. This mom is besides herself and ready to pull her hair out. Why? Because this mom reports that the cancer treatment altered her daughter's personality and behavior. She described how her daughter has constant/daily tantrums that are so severe her daughter lands up physically hurting herself. She mentioned when she told the doctors about this, the doctors suggested the daughter get connected with a behavioral therapist in the community to help her manage these concerns. 

There is so much wrong with this suggestion, I don't no where to begin. First off, medical doctors refuse to see that these drugs have psychological consequences on our children. Like this mom, we experienced these emotional tantrums and outbursts from Mattie. So much so that the hospital psychiatrist referred us to an outside therapist to manage them. Which was even more comical, because we were NEVER living outside of the hospital. I was livid that this psychiatrist in essence abandoned us, left me to figure out these tirades on my own, and worse felt that the behavior was a reaction to his environment and not the treatment. He wouldn't even accept the notion that the medications may have triggered such outbursts. In Mattie's case, I reported this psychiatrist to the chief of pediatrics and shared with her my perspective on just how wrong his referral was, because for the most part community practitioners are not trained and skilled to work with childhood cancer issues. 

In any case, I understood all too well what this mom faces each day and my heart went out to her. I tried to normalize what she was saying, letting her know that she wasn't alone and that we had the same problem. There were many psychosocial concerns that popped up during Mattie's 14 month treatment process and all of them together inspired us to create the Mattie Miracle Cancer Foundation. A Foundation totally devoted to psychosocial awareness and support. As I told this mom, one of our tag lines is..... the psychosocial issues don't end when the treatment does. This mom, who I don't know, wrote back to me immediately, letting me know she felt understood and heard. Also wanted to know more about Mattie Miracle. 

Now how difficult was that to do for this mom? Why couldn't her medical support team listen and empathize? It is a rhetorical question of course, but it would be nice for medical doctors to acknowledge that the medicine alters our children. It changes them psychologically and it is unacceptable that this isn't publicized and even considered when parent's present these issues. 

Monday, October 15, 2018

Monday, October 15, 2018

Tonight's photo was taken in October of 2008. I remember snapping this photo like it was yesterday. Mattie was pictured here with Linda, his child life specialist. Linda understood Mattie and was a fierce ally. She deduced that he was bright, needed challenges, to be involved in decision making, and he thrived on responsibility. Which was why that day Linda let Mattie into the child life playroom. The room was closed for a couple of hours so Linda could organize a massive toy delivery. She invited Mattie into the room to help organize and of course he landed up with a few toys in the process. A real win win! 


Quote of the day: Some people seemed to get all sunshine, and some all shadow. ~ Louisa May Alcott 

This is what our Bourbon and Bites Bash invitation and envelope looks like. As of now, about 140 invitations have been placed in the mail. We spent several weeks designing this invitation and envelope. Though technology now rules, we felt there was still something special about receiving a hard copy invite. 

We are very grateful to our host committee for helping us with this new event, for reaching out to their networks, and for helping us with event expenses. I have wanted to have an evening event for years, but honestly I did not know how to even begin this executing this idea. 

Then two things happened..... Debbie, our friend and the wife of a board member, invited us to have an event at her lovely home and Brett, another board member (who is now a cancer survivor), reached out to us to volunteer his bourbon distillery for a fundraiser. The timing was perfect. So we decided to combine bourbon, farm to table creations and other culinary treats, the sounds of a sought after jazz pianist in DC..... all within a beautiful setting.  

The purpose of this event is to expand our network and grow our support base. A base which keeps Mattie Miracle thriving and growing, and enabling us to make the psychosocial miracles possible. We realize that our May Walk isn't an event for everyone, and we are hoping that an evening event will attract other interested members of our community who are looking for a good cause to support long term. 

Certainly we welcome anyone who wishes to come. There is an $150 fee to register for this event, and $120 of which is tax deductible. To learn more, go to: www.mattiemiracle.com/bash


To me a stamp is a piece of art and sets the whole tone of an invitation. So I knew a regular stamp wouldn't do for our envelopes. So I went onto the USPS website and looked up current stamps. Low and behold I found Total Solar Eclipse stamps. Not only was the color perfect for our invitation, but the symbolism was meaningful. Especially since Mattie Miracle's logo incorporates the sun. Though the majority of people receiving the invitation will not make this connection, I do, and I also think the total solar eclipse visually speaks to what figuratively happens to bereaved parents. Losing a child to cancer in a way, blocks out all the sun from one's life. However, with support and "warmth" around us, there are times when the light (or hope) does shine through. 

Mattie would have loved this stamp! Because it is the only stamp that changes form when heat is applied!!

The United States Postal Service issued the Total Eclipse of the Sun (in which the sun is obscured by the moon) Forever stamp on June 20, 2017. The stamp includes two superimposed images, one showing a total solar eclipse and the second showing a full moon that is revealed upon heat being applied. Literally I just breathed on the stamp with warm air, and sure enough I saw the moon. My Mattie Moon!

Sunday, October 14, 2018

Sunday, October 14, 2018

Tonight's picture was taken in October of 2008. I absolutely know it was a Friday! How? Because Mattie was in the hospital hallway doing a science experiment. On Friday's the chemistry club at the University would come into the pediatric units and entertain the kids. They always did a very hands on activity that involved learning in a fun way. As you can see, that day they were making snowballs out of dry ice. They gave all the kids hospital socks to put on their hands and then each child got to hold a snowball. Mattie loved the president of the club, Chris. Chris was great with Mattie, and he knew if Mattie wasn't coming out to the hallway to participate, Chris would do a private show for Mattie in his room. I am deeply grateful for people like Chris who freely give of their time and skills to visit children in the hospital.


Quote of the day: My whole being’s changed since my son got cancer. ~ Michael Bublé 


My mom sent me this article today entitled, Michael Bublé QUITS music following heartache over son Noah's 'life-changing' cancer battle as he reveals he is done with fame in final interview. I am a fan of Bublé's, most likely because to me he sounds a lot like Frank Sinatra. I had heard that his 5 year old developed cancer but I must admit I hadn't followed the story. 

Thankfully his son Noah is in remission and the treatment effectively managed his form of kidney cancer. Which is wonderful, yet Bublé is the perfect example of how a parent's life is completely and permanently altered from the experience. Things haven't gone back to 'normal' or usual for him. Frankly they never will, I am just impressed he was able to face this reality early on and bring attention to this psychosocial issue for the rest of the world. Nothing is wrong with Bublé. His reaction to leave the entertainment industry makes perfect sense to me. He experienced a parent's worst nightmare and as a result, he isn't bouncing back, getting fixed, or you insert the platitude! 

From an outsider's standpoint, Bublé has everything.... fame, fortune, success, a beautiful wife, family, and lifestyle. Yet if anything can sober someone up quickly it is a diagnosis of childhood cancer. Childhood cancer quickly makes you see that material things mean absolutely nothing and they don't bring happiness. They certainly do not protect you for cancer. Given the article I read, Bublé wrestled with issues related to stardom and being in the public eye, way before cancer came into his life. However, I have NO DOUBT that it was Noah's cancer that was the spark that ignited a chain reaction..... which was to make a change in his life. 

Just like I couldn't see going back to teaching in an undergraduate or graduate classroom, he can't see himself performing, worrying about ticket sales, his popularity and the material list goes on. I know many friends of mine who thought something was seriously wrong with me after Mattie's death. But here in lies the great divide. There are those who empathize and try to understand what it must be like to have a child live and die from cancer and then there are those of us like me, who are forced to live with this reality. Empathy versus reality is a huge conflict and difference. But at the end of the day, a bereaved parent has to do what works for him or her. We no longer have the desire or where with all to explain ourselves, our decisions, or our priorities to others. We are forever changed and yet we must figure out how to live with these horrific experiences that continually swirl around in our minds and hearts. Experiences that don't go away and yet experiences we have to park somewhere if we are going to continue living and interacting with the non-cancer world. 


Michael Bublé QUITS music following heartache over son Noah's 'life-changing' cancer battle as he reveals he is done with fame in final interview:

https://www.dailymail.co.uk/tvshowbiz/article-6272425/Michael-Buble-QUITS-music-following-son-Noahs-life-changing-cancer-battle.html

Saturday, October 13, 2018

Saturday, October 13, 2018


Tonight's picture was taken in October of 2008. Mattie was two months into treatment, but it was before his first limb salvaging surgery. Which was why Mattie was moving around like a typical child. These flag poles are near where we live. In fact, whenever I pass them now on a walk, I am immediately transported back to this moment in time. A time when Mattie was walking and loved to weave between each of the poles. 






Quote of the day: Children are not just smaller, softer adults, and the differences matter for their treatment. ~ Kurt Newman


A friend of mine sent me an article entitled, Healing children': A surgeon's take on what kids need. She heard about this doctor and his book while listening to NPR. I believe what caught her attention on the radio was that the doctor's message resonated with Mattie Miracle's mission. 

The article focuses upon a surgeon and now CEO of Children's National Medical Center in Washington, DC. When Dr. Newman was asked what types of changes he hopes to see in health care for children, he mentioned two that caught my attention. The first change, is that he hopes to see more doctors and nurses getting trained in pediatric care and the second is that he would "put more into mental and behavioral health." 

I am not quite sure what he means by putting more into behavioral health. Money, training, and/or incorporating it into comprehensive care??? As I could interpret this statement in various ways. But one thing is quite clear, doctors can't work effectively without the support of psychosocial professionals. Especially with long term, chronic or life threatening illnesses. Children in these circumstances need much more than just the medicine and in many cases when children refuse medical treatment, have tantrums, are stressed out, and the list goes on..... who deals with this? NOT the medical doctors, I assure you. 

Instead, it is the psychosocial team that is called in to intercede. But what a recent national study indicated is that psychosocial professionals are not well trained in pediatric oncology issues for example. Let's take the profession of psychology. These individuals go through doctoral programs and may specialize in pediatrics. However, in many of these cases, this professional can graduate never having worked in a pediatric oncology clinic or unit. So literally if this professional selects an oncology setting to work in, it is literally baptism by fire. Learning on the job, since rarely do psychology grad students have the opportunity for training while in school! So YES it is my hope too that psychosocial (not just doctors and nurses) professionals choose pediatrics and also have the opportunity to get specific education and training in pediatric specialties before they enter the field and work independently with patients and families.  

Healing Children': A Surgeon's Take On What Kids Need:

https://www.npr.org/sections/health-shots/2017/07/01/534884325/healing-children-a-surgeons-take-on-what-kids-need