Saturday, November 2, 2019

Saturday, November 2, 2019

Tonight's picture was taken in October of 2008. That day, I believe my students dropped off this large Halloween basket for Mattie. They wanted him to know they were thinking of him. It was a beautiful and thoughtful gesture. But as you can see, it wasn't a good day for Mattie. He felt sad and depressed, because he was very aware of his differences. In the beginning of his treatment, the hospital was considered foreign to us, and we were the outsiders. As time went on, I would say things flipped. The hospital became our home and the outside world no longer made sense to us. 


Quote of the day: Time cannot be packaged and ribboned and left under trees for Christmas morning. Time can’t be given. But it can be shared. ~ Cecilia Ahern

Today was the first day of candy sorting for the Foundation. I was at it from 9:30am to 4pm. Non-stop, never sat down or ate anything. Candy is trickling in this year, unlike years past. We had many volunteers on hand today, but it was a challenge to keep them busy. But we managed and process through many, many bags of candy today
Pictured from left to right:
Vicki, Dr. Nita Seibel, Grace, Pat, Christine, and Jack

Dr. Seibel has served on the Mattie Miracle board for ten years and she was actually part of Mattie's treatment team. She worked at another institution in DC, but she consulted on Mattie's case numerous times. In fact, she was the one who counseled us to add certain chemotherapy medications to Mattie's treatment protocol early on. As she felt you only get one real good chance to attack this form of cancer, so you might as well address it head on. It was good advice. 

Later in the afternoon, we had a team of moms and daughters from The National Charity League of Alexandria helping us. With many hands, sorting candy goes VERY quickly. 

These children are my friend Margaret's grandchildren. Margaret was Mattie's preschool teacher and my dear friend. From left to right are Grayson, Charlotte, and Parker. To me, Charlotte is the spitting image of Margaret. When I see her, I can't help but think of my friend. 

Margaret's daughter, Ali, hosts our candy drive at her home. That sounds cute, but the candy drive is a huge production and I am so glad that in the process I get to spend time with the children and get to know them better. 

Friday, November 1, 2019

Friday, November 1, 2019

Tonight's picture was taken on Halloween of 2008, Mattie's last Halloween with us. Each year at the hospital, a non-profit group brings in costumes for the children. Mattie got to look at all the costumes a day before the other children. We will always be grateful to Mattie's art therapists and child life specialist, as they understood how fragile Mattie was. He had just had his first limb salvaging surgery and his right arm was bandaged. Mattie walked gingerly and was afraid that others would injure him in some way while moving around. So having a preview of the costumes was a gift. In a quiet environment, Mattie inspected all the costumes and purposefully picked this one. As a mummy, no one could tell that his arm was bandaged or that he had cancer. Mattie had two trick or treat events that year, both in the hospital and with his friend Zachary in Alexandria, VA. 


Quote of the day: A kind gesture can reach a wound that only compassion can heal. ~ Steve Maraboli


The Mattie Miracle Candy Drive began today. It was a slow start, but I know by tomorrow, the candy will begin rolling in. It is funny every year I wonder.... will people donate candy? But by the end of the drive, my thought is...... where on earth did all of this candy come from?

I came across an article in the Journal of Pediatric Oncology Nursing (in which I copied the abstract below), entitled Parent and Child Preferences and Styles of Communication About Cancer Diagnoses and Treatment. The title alone caught my attention and I feel this is an article worth reading. In all reality not much data is out there guiding healthcare providers and their communication with parents. I think this article highlights the significant problem parents face, because how, when, where, and by whom information is communicated to us MATTERS. 

I will always remember December 5, 2008. On that day, Mattie had a CT scan of his lungs. Later in the day, I saw the WHOLE medical team walk down the hallway toward Mattie's room. I literally knew the results before they even spoke one word to us. Having the whole team present had to mean that Mattie's cancer metastasized to his lungs! I can still recall that Peter and I were brought into a separate room in the unit, while Linda (Mattie's child life specialist) stayed in Mattie's room with him. Of course they then told us what I had already intuitively gathered.... Mattie had four lung tumors. It was a terrible way to learn about Mattie's metastasis and if that wasn't bad enough some members of the team asked if I wanted to pray or go to the hospital chapel. That also set me off! Needless to say, I am not quiet! I later let them have it and told them I felt set up with the whole team marching down the hallway, staring at us as they gave us the new! I then told them moving forward WE (Peter and I) needed some control over how this information was conveyed to us. 

Therefore, when I read the article by Lauren Smith, I felt like I could have been part of her focus group! Because I would have given her similar feedback.... health care providers do need training in bedside manner and how they deliver information to families. Not that this will change the outcome of the situation, but it absolutely impacts our quality of life. After all, Mattie has been gone for ten years now, but I still remember December 5, 2008 like it were yesterday. To me that is a qualify of life issue!

Parent and Child Preferences and Styles of Communication About Cancer Diagnoses and Treatment. (Lauren Smith)

Communication challenges frequently occur among families and health care providers of children with life-threatening conditions. These obstacles compound concerns related to children's diagnoses and treatment, the family's quality of life, and delivery of care. Developmentally appropriate and validated methods of addressing the communication preferences of families with chronically ill children are limited. This study used six focus groups to determine child and parent preferences and styles of communication centering on new diagnoses and changes in prognosis. Hypothetical situations were used to minimize feelings of self-consciousness among school-aged and adolescent participants. Qualitative analyses (interrater reliability 75%) of child and parent responses revealed 3 categories and 11 subcategories or themes. The category of Characteristics of Communication Exchange included (1) how to tell, (2) who should tell, (3) when to tell, (4) who should be included, and (5) what to tell. The Knowledge and Understanding category included themes of (1) side effects of treatment, (2) what children understand, and (3) questions when being diagnosed. The category of Feelings and Emotions included themes of (1) feelings about changes in prognosis, (2) children's feelings on being informed, and (3) coping and emotional regulation. Results reveal a need for developmentally appropriate, evidence-based education to inform parents on how, what, and when to communicate information concerning their child's disease, as well as instructions around facilitating those discussions. Moreover, a need for professional education and training programs for providers is demonstrated by some parental dissatisfaction with bedside manner and disclosure of information. The data collected from this study lay a foundation for future research in communication as a principal factor in quality of life for pediatric patients and their families.

Thursday, October 31, 2019

Thursday, October 31, 2019

Tonight's picture was taken on Halloween of 2007. Mattie was five years old and together we went costume shopping. That was the first year we bought a costume rather than making it. Mattie wanted to be an air force pilot. However, the costume we found was army themed. So, I reached out to my friend Charlie, who is a retired colonel in the air force and she sent me all sorts of air force patches. Patches which I hot glued onto the costume. 






Quote of the day: Did you know that at one time trick-or-treating was stopped? It's true. During World War II children were not allowed to trick or treat because there was a sugar shortage. ~  Linda Bozzo


It is 6pm and I have had a VERY FULL day. Today was my first colonoscopy. Which if you haven't had one, it's an experience. I am not sure what is worse, the all liquid diet for a day and a half or the noxious concoction they make you drink. Needless to say, given that I suffer from chronic daily migraines, this liquid diet and the 32oz of what I deem to be a poisonous laxative, did me in. I have a full blown migraine. 

The actual procedure is no problem, mainly because you are sedated and it is quick. However, I had a pre-procedure nurse today that I wanted to smack. She couldn't find a vein to start an IV and I was ready to throttle her. While poking me multiple times she was complaining about having to take her three children out trick or treating. She then asked me about my children. Of which I promptly gave it to her! Honestly, she needed a reality check. 

Meanwhile, we found the article below in The Washington Post today. It highlights the creativity of a 10 year old who is at the Lab School (a school which donates candy to Mattie Miracle each year) and takes Halloween quite seriously. However, within the article the boy mentions he donates ALL his candy to Mattie Miracle. So naturally I wrote the author of the article, in hopes that she will do a follow up piece on us. Check it out below!

Through a haunting display, a teenager finds a focus that doesn't come easy to him; Chase Bellows, 15, has been transforming his D.C. garage into a Halloween haunt for neighbors since he was 10.
Copyright 2019 The Washington Post All Rights Reserved
Byline: Theresa Vargas

For most young people, Halloween is all about the sweet loot. It's about bite-sized Snickers tossed into bags with miniature packets of Twizzlers and Skittles and that candy with the grandest of names and the most meh of tastes, Milky Way.

But 15-year-old Chase Bellows can't remember the last time he went trick-or-treating. Maybe he was 10. Maybe he was 11.

"I think it's been four years," he says. "But I don't really mind."
He stopped knocking on doors with friends not because he dislikes the holiday. He stopped because he really, really loves it. He stopped because he wanted to spend that evening giving his D.C. neighborhood - and the strangers drawn there each year by homes that tend to hand out full-sized candy bars - a haunting experience.

His neighbors in The Palisades already know that as soon as the sun sets on Oct. 31, the teenager's garage will open to visitors, and inside, they will find carefully crafted decorations, eerie music and costumed actors ready to jump out with terrifying timing.

They will find scenes that took Chase months to put together and that show an impressive attention to detail - and not only because of his age.
The focus the work takes does not come easy to Chase, who is a ninth grader at the Lab School of Washington, which describes its students as "learning differently." He was diagnosed years ago with severe attention-deficit/ hyperactivity disorder, or ADHD.

"It makes me really distracted," Chase says. He explains that he can go from sitting in class to noticing a squirrel outside the window and suddenly his thoughts are chasing that squirrel. "It's just like a distraction, a distraction, a distraction everywhere."

But for his haunted creation, he uses the very skills that, even with medication, can be elusive for him: concentration and commitment. Months before Halloween, he starts brainstorming ideas, planning out the space and searching for bargain-priced props. On the day of the holiday, he does the makeup for all his friends and puts the final vivid touches on the scenery outside the family's home and inside their garage.

"That requires an incredible amount of dedication and focus," says his mother, Melina Bellows. She recalls how after the arm broke on a figure outside their home, her son called the manufacturer and when he didn't hear back from anyone, went to Home Depot to find the right adhesive. "We all have our challenges. But if you can find your passion, you'll find a workaround. He just works tirelessly on this."

As we talk on a recent evening, she points toward a fog machine. The white smoke spilling from it contains a strange, yet familiar scent. It takes a moment, and a few deep inhales, before I recognize the smell of a hospital. Think Vicks VapoRub. Chase found the special fog online while looking for items that would fit this year's theme of asylum.

All across the family's yard are items that he has given a lot of thought toward. Some he found at bargain shops. Others he pulled from dumpsters. A few were given to him as birthday and Christmas presents.

From his grandmother, he received a towering white figure in a pinstripe suit with wispy black hair. "I am everywhere," it says. "Come to me, my children. Come with me. You are all my children now."

Several steps away, a child-sized doll dressed in a stained sailor shirt sits on a battered red tricycle. Chase found him in an antique store on Maryland's Eastern Shore. The conversation with the salesman, he recalls, went something like this.

Salesman: That thing is creepy. We think it's haunted.
Chase: Perfect.

He still remembers the first Halloween decoration his family bought. He was maybe 5 when his mother brought home a 6-foot-tall dancing Frankenstein. "It was the funniest thing ever," he recalls. Chase was about 10 when he first turned his garage into a haunted space. That year, it wasn't scary at all.
"Now, people are hesitant to go in," he says. "There were people that cried last year."

Last year, when the theme was "toy factory," between 200 and 400 people shuffled through the small space in one night, the teenager and his mother estimate. This year, they are not sure how many to expect.
"The kids in the neighborhood look forward to it all year," Melina Bellows says. "They start their Halloween here and end their Halloween here."

Those who come this year will find themselves walking through a maze of white sheets hanging from the ceiling. They will pass by yellowed and tattered posters that show "missing" people and "rules for patients." And before they exit a minute later, they will feel long strands of dangling hair brush against them and watch actors, played by Chase's friends, pop out unexpectedly.
"Where your foot is, they're going to reach out," he tells me during an early tour.

As the 15-year-old talks, he holds a plastic severed hand as if it's an empty water bottle. The more animated he gets, the more the lifeless limb moves. After he reveals some of his creative secrets, such as how he rubbed oats and acrylic paint together to create one doll's frightening appearance, I ask him to show me what he is most proud of. He can't decide.

"I'm kind of proud of everything," he says. "That I was able to do this in two months. This is a big thing for me. I have to focus on one thing to get it done, and it can be really draining sometimes." In years past, the haunted experience has been free. This year, Chase will ask visitors to leave one piece of candy as an entry fee.

He and his mom plan to donate whatever is given - Milky Way bars and all - to the Mattie Miracle Cancer Foundation, which distributes the candy to hospitals and nonprofits that assist children with cancer and other needs.
Once Halloween ends, most young people divide their sugary treats, put away their costumes and fall back into their normal routines. Chase will still have work to do. He has to clean the garage so his mother can park her car in it again. He also plans to search Halloween sales for items he can use next year.
Already, he is thinking about that display. This year, his mom vetoed his suggestion to use a chain saw prop. She also - once again - told him he could not expand his creation into the house.

"But next year," he tells me, "who knows?"

Wednesday, October 30, 2019

Wednesday, October 30, 2019

Tonight's picture was taken on Halloween of 2006. Mattie was four years old and finally got to wear his calico cat costume while trick or treating. We made this costume together the year before, but given that Mattie was hospitalized on Halloween of 2005 with sepsis, he never got to wear this costume. Fortunately the costume was comprised of a sweat suit, Mattie's favorite material, so it stretched and fit him perfectly. The cutest cat around!


Quote of the day: There’s a lot of confusing and misleading information on the Internet about the relationship between sugar and cancer. The notion that refined sugar causes cancer or that cutting sugar from the diet is a good way to treat cancer are two common — and incorrect — claims that turn up in a Google search. ~ Memorial Sloan Kettering Cancer Center


Given we are approaching the Halloween candy season, I find that I receive MANY emails from members in the community who want to participate in our Post-Halloween Candy Drive. I try to make it clear that the candy goes to FAMILIES (parents and caregivers) of children with cancer. Nonetheless, it isn't unusual for me to receive disgruntled emails, like the one I opened up today:

I received an email from our concierge service asking for the following: Donate your extra Halloween candy to provide a sweet treat to families who are battling childhood cancer. Benefiting the Mattie Miracle Cancer Foundation. I read a lot about natural health and although it is important for children with cancer to be treated as normally as possible, I find it unsettling for a charity for childhood cancer to be asking for candy, as candy (sugar) feeds cancer. Thank you for reading my email expressing my concerns.

Whenever people push back on me about candy, I could do one of two things. First I could ignore it, or two, listen and address the concerns. Given that I am NOT personally collecting the candy, but doing it as part of the Foundation, I ALWAYS respond to any inquiry. I certainly could give this woman some facts about sugar and cancer, but I didn't. I didn't because people don't always want to hear the FACTS about cancer. It is much easier to think that we can eat differently or change our behaviors and this will PREVENT us from getting a cancer diagnosis. Unfortunately it doesn't work this way and it DEFINITELY doesn't work this way with childhood cancer. Considering that MOST childhood cancers occur by happenstance and not as a result of genetics and environmental factors.

So instead, I addressed her concerns and told her about our FREE snack and item carts at local hospitals. The carts are intended for the parents and family members caring for children in the hospital. Therefore the candy on our Carts supports EVERYONE else but the child with cancer! I have personal experience both as a mom whose child had cancer and as a Foundation leader who pushes our Carts around hospital units quarterly, that candy makes a big difference! Parents thank me, and feel that the Carts are a lifesaver! When helping a child with a life threatening illness, you need as much energy as you can get to manage the 24/7 routine. Under times of crisis, most of us DO NOT turn to a granola bar. Candy, can feel like a real gift when isolated in a hospital unit and honestly when I push the Carts, I observe parents' eyes lighting up when they see chocolate... almost as if they won the lottery.

Now that's the psychosocial piece. The piece I did not share with the woman who made the inquiry is the scientific fact..... SUGAR has not be linked to causing cancer!

According to the Mayo Clinic:

Sugar doesn't make cancer grow faster. All cells, including cancer cells, depend on blood sugar (glucose) for energy. But giving more sugar to cancer cells doesn't speed their growth. Likewise, depriving cancer cells of sugar doesn't slow their growth.

This misconception may be based in part on a misunderstanding of positron emission tomography (PET) scans, which use a small amount of radioactive tracer — typically a form of glucose. All tissues in your body absorb some of this tracer, but tissues that are using more energy — including cancer cells — absorb greater amounts. For this reason, some people have concluded that cancer cells grow faster on sugar. But this isn't true. 

However, there is some evidence that consuming large amounts of sugar is associated with an increased risk of certain cancers, including esophageal cancer. It can also lead to weight gain and increase the risk of obesity and diabetes, which may increase the risk of cancer.

I remember when Mattie was dealing with cancer, he practically ate and drank NOTHING. He was turned off to food for the most part. However, there were times when he had cravings for things and frankly WHATEVER it was, we gave it to him.... potato chips, vanilla shakes, donuts, etc. I am sure this woman who wrote to me today would most likely think that I was being irresponsible. However, I think what I was being was a mom. When you are helping someone who is battling a life threatening illness the last thing you are thinking about is the nutritional value to be blunt. You are thinking about.... WHAT CAN I GIVE THIS CHILD THAT WILL PUT SOME CALORIES INTO HIS BODY? So NO, I do not share her concerns and better yet SCIENCE has debunked her theory! 

Tuesday, October 29, 2019

Tuesday, October 29, 2019 -- Mattie died 526 weeks ago today.

Tonight's picture was taken several days before Halloween of 2005. Mattie was three years old and at that point he was in preschool. Mattie was so excited about Halloween and together we created his calico cat costume. I still remember going to buy felt material at the crafts store and cutting out these patches and gluing them onto a sweat suit. Sweat suit material was Mattie's fabric of choice for most of his costumes! Unfortunately Mattie never made it to Halloween. He got very ill with sepsis and was hospitalized. We spent Halloween at the hospital. This particular hospital did not have a peds program or a child life professional. Honestly the doctors and nurses did not know how to care effectively for a child much less meet Mattie's psychosocial needs. Mattie was upset being in the hospital, but I assured him he could use the calico cat costume the following year. Which we did!



Quote of the day: If suffering brought wisdom, the dentist's office would be full of luminous ideas. ~ Mason Cooley


The saga of my tooth issue continues. I have been dealing with this tooth since APRIL! As I reported on October 10, I had a root canal. It was very needed and I made the right decision. However, the endodontist who performed the root canal, is not the professional who places in my permanent crown. I had to go back to my own dentist today for this procedure. Like before, I felt just great before my dentist touched my mouth. Today he removed the temporary partial crown and placed on the permanent partial crown. I could tell when the crown was popped onto my tooth that it did not fit well. You know the feeling of putting a round peg in a square hole. Well that is how it feels. It feels like a foreign objective is in my mouth and it feels like the crown is so tight that it is putting pressure on my other teeth. I told him this today, and he felt that this sensation would go away in a few days! Needless to say, I am NOT holding my breath. I am SO SO tired of this tooth issue, which I have been living with for almost 8 months now.

Meanwhile on top of that tomorrow I begin the prep for a colonscopy on Halloween. Given that I have never done this prep before, the fear of the unknown is high. It's not the start of a good week!

Monday, October 28, 2019

Monday, October 28, 2019

Tonight's picture was taken on Halloween of 2004. This was Mattie's third Halloween and by that point, he absolutely understood what Halloween was about! We went shopping for his costume together and we both gravitated to Winnie the Pooh. We both loved Pooh stories and this costume was soft and not itchy. Which were required qualities of any Mattie costume! I think he made the cutest Pooh around. 








Quote of the day: Once in a young lifetime one should be allowed to have as much sweetness as one can possibly want and hold. ~ Judith Olney

Another beautiful weather day in Washington, DC. Which of course inspired me to take a walk to the National Mall with Sunny. Sunny LOVES the Mall. In one of the tidal pools is the resident Great Blue Heron. He is always there!

Around our complex, new flowers were planted for Fall. I LOVE pansies and to me the orange flowers scream out.... MATTIE MIRACLE!

It begins! Today we packed up our car with all our candy bins! Even empty bins are very heavy. We store the bins at a friend's house. But unfortunately where the bins are stored is not where we host the candy drive. So it was a day of running around and set up.  

Our friend Ali has an amazing two story garage. This is the perfect space for the candy drive. 

Get the picture? Literally candy comes in by the front of the garage door and volunteers sort the candy into the orange bowls you see on the tables. Once sorted into ziploc bags, the bags then go into bins. Quite the system. 

More of the sorting process!

Can you see all the bins stacked and on the floor behind the sorting tables? It is hard to believe but within a week, the garage will be FULL of candy!

Bins and more bins! So how do we know Ali? Well Ali is the daughter of my "dear" friend Margaret. Margaret was Mattie's preschool teacher and a devoted Mattie Miracle supporter. In fact, it was Margaret who secured our FIRST corporate sponsorship for the Walk. I am saddened that Margaret died in 2014 from ALS. But her daughter, Ali has picked up where her mom left off. Rather a beautiful tribute to the memory of Mattie and Margaret. 

Sunday, October 27, 2019

Sunday, October 27, 2019

Tonight's picture was taken on Halloween of 2003. Mattie was a year and a half old and was beginning to understand that Halloween wasn't like any regular day. Mattie and I picked out his costume, and I knew sticking with a sweat suit material would be perfect for Mattie. As Mattie did not like materials that were itchy or scratchy and he especially did not like things that would confine his head. Unlike me, Mattie did not like candy. Especially chocolate. When he got older, he would go trick or treating but he did it for the social experience NOT for the candy. Typically he would give his candy to others. 

Quote of the day: Disappointment is just the action of your brain readjusting itself to reality after discovering things are not the way you thought they were. ~ Brad Warner

Peter had the fortunate opportunity to be invited to the World Series game last night between the Nats and Astros. Unfortunately the Nats lost, but Peter had a great time and is getting to know some of the season ticket holders around where our friend has his seats. From what I understand, Peter's voice was captured on ESPN, because he was screaming that loud. With every Nats batter, Peter would scream, "I believe." I wish I could have found this coverage on the internet. 

When we woke up this morning, the weather was horrible. Torrential rain and damp. However, by noon the sun came out and believe it or not, it was 80 degrees in Washington, DC today. It was a glorious day, and we walked Sunny around the National Mall. 

The signs of Fall are all around us, especially when you see a sea of fallen leaves. 

Sunny loves going to the National Mall, because there are a ton of squirrels who reside there. He was so excited, that we couldn't get him to look at me for a photo. 

Meanwhile, we are all sitting outside on our balcony this evening. It is such a glorious day, that I am typing the blog outside and Sunny is catching the breezes. It was the kind of weather day you wish you could bottle, and that everyday could be just like this!