Saturday, September 8, 2018

Saturday, September 8, 2018 -- Mattie died 9 years ago today. 

Tonight's picture was taken in March of 2005. Mattie was about three years old and was sporting his Easter sunglasses. This was a spontaneous moment and I am so glad Peter captured it. You can see the joy and happiness on Mattie's face. 



Quote of the day by Bernard Shaw

I took an acorn and put it in a pot.
I then covered it with earth, not a lot.
Great pleasure was mine watching it grow.
The first budding green came ever so slow.
I watered my plant twice a week
I knew I would transplant it down by the creek.
One day it will be a giant oak, 
To shield me from the sun a sheltering cloak.
Lovers will carve their initials in the bark, 
An arrow through a heart they will leave their mark.
It will shelter those caught in a fine summers rain, 
Under its leafy bows joy will be again. 
Creatures of the wilds will claim it for their own, 
Squirrels will reside here in their own home.
Birds will build nests and raise their young, 
They will sing melodies a chorus well sung.
Under it’s branches grass will grow, 
Here and there a wild flower it’s head will show.
My oak tree for hundreds of years will live.
Perhaps the most important thing I had to give.

On this 9th Anniversary of Mattie's death, I can safely say that it doesn't get easier and NO...... TIME DOESN'T HEAL ALL WOUNDS. As I always say, "the psychosocial issues DO NOT end when the treatment does!" This is not just a cute sentiment but instead a powerful message that cuts through the heart of the matter. Things do not return to normal once treatment is over and if your child died from cancer, you live with profound psychosocial issues that you may not talk about nor may others see or notice, but they are there and they forever affect how you see, interact, and feel about life and the future.

It is hard to wrap my head around the fact that Mattie has been gone more years now than he was alive. I will never forgot the day we learned that Mattie's cancer metastasized. He literally jumped into my lap and wanted to hear the story about the day he was born. He LOVED hearing that story, since Mattie literally kicked his way into the world. To know Mattie was to love him. His teacher once described him to me as "an old soul!" She was absolutely right! Somehow Mattie knew he had to live life to the fullest, because he wasn't going to be with us long.

We miss him today, and EVERYDAY. I am still not certain what gets me out of bed each day, but one thing I am certain of and that is my mission is to share Mattie with others, to keep his memory alive, and to make sure the world knows CHILDHOOD CANCER IS NOT JUST ABOUT THE MEDICINE!

TEN MATTIE FACTS:

1) Mattie was born after 24 hours of labor, by c-section.

2) Mattie was a baby who did not like to nap or sleep.

3) Mattie was a late talker and walker.

4) Mattie never crawled but actually wanted to skip that step and move to running.

5) Mattie had a sense of humor! Right from day one. When he was about six months old, I called his doctor in a panic because I thought he wasn't breathing. The doctor and I later deduced Mattie was laughing (probably from watching me freak out) so hard that it looked like he was struggling for air.

6) At age two, Mattie could disassemble his hot wheel cars with a screwdriver and PUT THEM BACK TOGETHER AGAIN.

7) Mattie LOVED anything that moved.... cars, trains, planes, trucks, etc.

8) He was the KING OF THE LEGOs, in fact during his 14 month cancer battle, he built every LEGO set on the market.

9) Mattie LOVED the phrases "apparently" and "let's talk about it." He used them all the time.

10) I wasn't called mom, but instead was known as "UNA MOON." Very telling, as Mattie was called "Mattie Moon" in preschool!

Yesterday we found out that Mattie's school was going to plant a fourth memorial tree (the previous three either died or had issues) for him today. Tim, the arborist, encouraged me to "branch" out and invite friends and family for a tree ceremony. As the hope was to give this tree good karma.


Peter and I tend to isolate ourselves on such milestone days based on our previous experiences. But we decided to try it again, especially since Tim drove about 120 miles to hand pick Mattie's tree for us. A beautiful Swamp White Oak!!!

Tim told us that in his 30+ years of planting trees, he has only seen three trees with a live orioles nest in it. Mattie's tree was his third. We view this as a sign. Also when we began filling in the dirt around the tree, a frog jumped out at us. Another Mattie sign. But as Tim said..... Mattie wanted an OAK tree, and wasn't going to be happy with us until we selected the right tree. We have been planting everything but an oak at his school. So we hope Mattie approves today's endeavor and whenever I see acorns around this tree, I will be thinking of Mattie. A boy who loved collecting and giving acorns as gifts.

What I want you to take note of are the friends around Mattie's tree. Literally I sent out ONE text message yesterday to our core Team Mattie, and look what it generated...... a crowd. Our friends have been on this journey with us for ten years! Peter and I are overwhelmed by today's showing, caring, and love.

Certainly we would prefer to NOT need a memorial tree, but being surrounded by friends today and then having lunch with them eased the blow of this horrible day.

Pictured here are children who went either to preschool or kindergarten with Mattie. It was so special to have them all with us today. 

Left to right: Sara Catherine, Abby, Ellie, Emily, Tim, Campbell, Livi, and Gavin

Friday, September 7, 2018

Friday, September 7, 2018


Tonight's picture was taken in September of 2007. It was Mattie's first day of kindergarten. I am not sure who was more nervous, him or me. Mattie truly did not want to take this photo, but I insisted! I always wanted to do a photo collage featuring Mattie's first days of school! Unfortunately we never made it passed kindergarten. Which is why this photo seems even more important to have captured. 







Quote of the day: by David Wright

If when I am gone thou would’st
honor me then plant a tree.
Some highway, bleak and bare,
Make green with Leaves.
So radiant and fair
And full of leaves my monument
will be, so ever full of
tuneful melody.
My monument will be a sight
most rare --
Trees planted everywhere.
A highway broad from city
to the sea --
Plant this in memory of me. 


When I tell you it was a farce today, I am not kidding. My day did not go according to plan at all. I am in the process of juggling the plans for several events. Some of which are for Mattie Miracle and some which are personal. Either case, it has been non stop with caterers, restaurants, and ideas for fundraisers. 

In the midst of this nightmare, I get a text message from Mattie's school to call their arborist. I have been emailing the school for a while now trying to impress upon them the need for a replacement memorial tree for Mattie. If you have been following the tree saga, then you know that we are on memorial tree #4 now!!!

The arborist (Tim) is a love and he really wants a tree on the campus that Mattie would have liked, not a tree the school wanted to add to its collection. By the way, the arborist donates the tree!!! It turns out Tim is going to drive 60 minutes back and forth tomorrow to a special nursery to hand pick a Sawtooth Oak for Mattie's memorial. In fact, he was calling today to set up a time for us to meet tomorrow to plant the tree together. 

In fact, Tim feels that Mattie has willed the other trees to die. He says Mattie's favorite tree was an oak, and he won't be happy until an oak is planted. Funny how Tim seems to understand Mattie, and yet he never met him. Tim has encouraged me to invite close friends and family to this event tomorrow!

Tomorrow marks the 9th anniversary of Mattie's death. Typically on these milestone days, I retreat and do not subject myself to any kind of group. I tried this group gathering the first year Mattie's died and it was an utter disaster. People came to Mattie's tree but then quickly left because their children had many activities to get to. It is a feeling I will never forget. In fact, I still can feel it today. I vowed never again to do this. Yet Tim encouraged me to get a group together, to send positive vibes to Mattie's new tree. 

So I literally text messaged some friends today and even with last minute notice, they are finding a way to be at the tree tomorrow. I have to remember that this is the gift. The gift of community which Mattie created for us back in 2008. I live with conflicts all the time. On one hand I appreciate this devoted support and on the other hand, I can get angry because at the end of the day, in my cohort, I am the only one who is deeply affected by this kind a loss. 

This was tree number 1! Planted in May of 2010. It was an oak. I selected an oak, because Mattie LOVED to collect acorns and give them out as gifts. 

After the oak died, the school encouraged us to plant a yellow wood tree in 2013. 

Unfortunately that tree died, so we planted a third tree in 2014. Also a Yellow Wood. 

In the spring, there was a huge wind storm and with it, trees came down. Down and split Mattie's Yellow wood tree. 

They tell me the tree is coming back to life, but again, I don't want a half cracked tree representing Mattie. Do keep in mind that NONE of Mattie's half dead yellow wood trees have ever been removed. So literally Mattie has a grove of trees dedicated to him around the playground. 

Tim is going to hand pick a Sawtooth Oak tree tomorrow. The Sawtooth has a spiky leaf, and looks different from your typical oak. 

The Sawtooth has one important feature... acorns! Acorns with frilly hats. Mattie would have gotten a kick out of this. So send good thoughts for Tree #4!

Thursday, September 6, 2018

Thursday, September 6, 2018

Tonight's picture was taken in September of 2008. Mattie was a month into treatment and as you can see was getting stir crazy in the two by four of a hospital room. That evening, Peter blew up latex gloves and Mattie was doing a puppet show for anyone who was passing by his window. Nurses knew, especially at night, that if Mattie had any energy, he was going to be up to something. Literally one night, around midnight, he sent his remote controlled tarantula down the PICU hallway. On a different night, he even sent his remote controlled car down the hallway with a note taped on it for his nurses. This was the beauty of Mattie!

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


I would have to say that September can put Peter and me into a funk. As September 8th quickly approaches, it makes us pause. We pause, because it is hard to believe that 10 years ago we were actively fighting cancer with Mattie. Now 9 years later, we have had to learn how to live life without Mattie. This maybe the hardest lesson and challenge yet. Because it is not something you master. Or you may feel confident that you have found a way through issues, but then someone says something or you are faced with a certain situation, and boom. You are forced yet again to navigate in a world that truly doesn't understand childhood cancer. 

I have many friends all around me whose children have returned to school. My feelings about school are not isolated to just me! On the contrary, many parents who lost a child to cancer also dread hearing about the school year. Most of us don't like hearing about it, seeing back to school photos all over social media, and don't get me started about hearing the pain parents face when children go off to college. 

Now with that said, at heart I am an empathetic person. So I can imagine the sadness of a child leaving home and going to college. I truly can appreciate that and understand how it impacts the whole family's dynamics. But I have to say I am intrigued when people talk to me and describe to me the loneliness, how their child's room is now empty, and well you insert the descriptor! I listen and appreciate the sentiments expressed but I wouldn't be human if in the back of my head I am saying...... but your child is coming back. Mine isn't, and mine will never go to college, or even attend high school. 

I would have to say childhood cancer has a way of dividing a bereaved parent from the rest of the world. Not just on the day your child dies, but continuously and constantly. Every developmental milestone that should be happening for Mattie evokes the feelings of grief again for me. People try to get it, but they can't possibly. Especially as more and more time passes. What I have learned  however over these last 9 years, is how to manage my expectations of others and my reactions to their insensitivity. Of course when I don't think either of these things is going to be possible, then I isolate myself from the situation. At times that is the best solution in order to protect my feelings and to avoid lashing out at others.  

Wednesday, September 5, 2018

Wednesday, September 5, 2018

Tonight's picture was taken in September of 2008. This is quite the photo, no? Tricia (Mattie's favorite HEM/ONC nurse) was kneeling down and flushing Mattie's IV lines. However, she knew Mattie and his good friend Charlotte were watching Scooby Doo and did not want to interrupt their time together. In a way, I wish I knew exactly what Mattie and Charlotte were thinking at that moment in time. Charlotte continued to visit Mattie throughout his journey and each time she came Mattie looked sicker. Adults think this doesn't have an affect on a child, but I have to wonder. Meanwhile, I knew from my interactions with Mattie how hard it was for him to see his friends. Because after a visit, his friends left and went back to their normal lives. A life he no longer had, which in some cases left Mattie in a terrible mood for the rest of the day. These were just some of the things Peter and I managed without me reporting them on the blog. It was a fine line I walked everyday. I knew Mattie wanted his space and isolation, but I also knew we couldn't shut people out because my hope was that some day Mattie would go into remission and return to school. 



Quote of the day: The single biggest problem in communication is the illusion that it has taken place. ~ George Bernard Shaw


I received in our Mattie Miracle mail box today the magazine, Oncology Nurse Advisor. I am not sure why we are getting this subscription, but I always find an article or two worth reading in it. One of the articles that caught my attention was entitled, Beware Abbreviated Explanations. The article was written by a nurse, after she observed her grandchild receiving care in an emergency room. She explained that the nurse caring for her grandson was having trouble starting an IV. The nurse did not get it after the first attempt, so had to stick the child again. Before doing that, she told him "It's going to be okay." At which point the child responded.... "it's NOT okay!" A response that most adults would like to give or perhaps shout out at their medical providers. 

The article acknowledged that children are more likely to tell medical providers as it is, but also the premise of the article was that doctors and nurses have to be cognizant of the words they choose to use with patients. What does.... It's going to be okay accomplish? Who is it said for.... the health care provider or the patient??? In translation the nurse was really trying to say..... I will get your IV in on the second try and these antibiotics will help you feel better and bring your fever down. However, instead of this lengthened explanation, she said... It's going to be okay. 

I do think adults in health care sometimes think kids aren't aware of what's going on around them and keeping communication simple and abbreviated is best. I have learned first hand that this doesn't work. Not only doesn't it work, it can back fire on a clinician. For example, if you told Mattie it's going to be okay...... and the end result was fever, pain, or nausea, then he remembered this and learned NOT to trust his care provider. I would have to say that Mattie's oncology nurses rarely if ever used this abbreviated form of communication. The culprits were typically the doctors. 

The article does make you stop and pause. The author discussed how easy it is to have a miscommunication not only verbally but electronically. She gave the example of sending a text to her brother about a place and time to meet. She thought what she typed was clear, but her brother interpreted what she wrote in a completely different manner.  Such miscommunications are tough enough between family members and friends, but in a medical settings such issues can be a matter of life and death. Which is why checking back in and confirming that both parties are on the same page is vital.


Beware Abbreviated Explanations That May Undermine Your Meaning, Patients' Understanding

https://www.oncologynurseadvisor.com/general-oncology/abbreviated-explanations-may-undermine-communications/article/778704/

Tuesday, September 4, 2018

Tuesday, September 4, 2018 -- Mattie died 468 weeks ago today.

Tonight's picture was taken on August 10, 2009. Five days after we learned that Mattie's cancer was no longer treatable. At this point, we knew Mattie was dying, we just did not know how soon. Mattie was a shell of himself by that point in time and though we tried to shield him from the extent of his illness, he knew intuitively that he was dying. How a child even knows about death is an interesting question, but Mattie understood he wasn't getting better. But was actually feeling worse with each day. In his hands was a bicycle horn. I am not sure why something gave Mattie the horn that day, but this horn interestingly enough is still in our living room and Sunshine (the boa stuffed animal) remains in Mattie's bedroom. 


Quote of the day: Enjoy the little things, for one day you may look back and realize they were the big things. ~ Robert Brault


Mattie Miracle is pleased that our grant process has now come to an end. As of today, each of the 12 researchers who submitted a grant proposal were sent an email communication from Peter and me. We crafted two different letters. One letter explained that we would be funding their research and the other letter thanked them for applying and encouraged them to re-apply next year. We have decided to fund 6 out of the 12 proposals. 

So out of these 6, one was selected by the scientific review committee overseeing our grant. The committee overwhelming selected Dr. Kimberly Canter's proposal (see photo and info below). Dr. Canter will be given $10,000 to conduct her one year study. Whereas the remaining five research proposals we wish to fund were personally selected by Peter and me. We decided to fund these studies at a $5,000 level. The reason we chose these studies is because they will be producing a tangible product that could be used at other treatment sites around the country.  In total we are talking about $35,000 worth of grant funding this year. 

On Facebook today, the American Psychosocial Oncology Society (APOS) posted..........

APOS applauds Dr. Kimberly Canter, awardee of the 2018 Mattie Miracle Early Investigator Award! Her funded proposal was entitled "Community Implementation of a Psychosocial eHealth Intervention for Parents of Children with Cancer." Thank you, Mattie Miracle Cancer Foundation for your immense generosity, partnership and dedication to making a difference in the field of psychosocial oncology!

Kimberly Canter, Ph.D., is a researcher and psychologist in the Nemours Children's Hospital System, Nemours’ Center for Healthcare Delivery Science based in Wilmington, DE. Dr. Canter is a licensed clinical psychologist and also holds an appointment as an Assistant Professor of Pediatrics at Thomas Jefferson University.

https://apos-society.org/early-career/apos-early-career-grants/

Monday, September 3, 2018

Monday, September 3, 2018

Tonight's picture was taken in August of 2005. Mattie was three years old and was visiting my parents in Los Angeles. Peter introduced Mattie to water and the pool. Mattie was cautious about going into the water, which in reality was a good thing. Mattie had a sixth sense, and understood that some things were bigger than him. Therefore he needed to investigate them first and take it all in before jumping into an activity. 


Quote of the day: For a chronic migraine, there are no triggers, life is my trigger. For chronic migraineurs there are no cures, there are only patches that will get you through to the next bout. Have we tried, acupuncture, herbal remedies, diets, standing upside down on our heads? Yes. The answer is if we have gotten diagnosed as chronic migraines then we have tried anything, and if by chance we have been able to get up and put our mask on that day please let us wear it, under our sunglasses and large hats. It took a lot to get there, and ain’t nobody got spoons for that. ~ Emily A.



We went out with Sunny today for a walk. I don't know if it was the bright sun, the intense heat, or knowing that we are in September (the month Mattie died). Either case, the combination sent me into a full blown migraine. So until tomorrow!

Sunday, September 2, 2018

Sunday, September 2, 2018

Tonight's picture was taken in August of 2006. Mattie was in San Diego, and visiting Balboa Park. This is a destination that has something for everyone.... such as the famous San Diego Zoo, all sorts of museums, shops, and restaurants. The park hosted the 1915–16 Panama–California Exposition and 1935–36 California Pacific International Exposition, both of which left architectural landmarks. The park and its historic Exposition buildings were declared a National Historic Landmark and National Historic Landmark District in 1977, and placed on the National Register of Historic Places.  Mattie absolutely LOVED the train museum in the park. Not to mention this pond filled with water lilies. A back drop that always reminded me of a Claude Monet painting. 


Quote of the day: The great pleasure of a dog is that you make a fool of yourself with him and not only will he not scold you, he will make a fool of himself too. ~ Samuel Butler

In June of 2016, I saw this photo on Facebook. Sunny (then called Lenny) was at a kill shelter in Piken's County, South Carolina. I had been seeing this cute face for several weeks. On social media, Sunny got lots of "likes." However, NO ONE wanted to adopt him. Who knows why. Perhaps because he was 5 years old, an adult. Or maybe because he was heart worm positive and needed lots of medical attention. In any case, on September 2, 2016, we brought Sunny to our home for the first time. Which is why I consider this his birthday. Or at least, the date when a better life started for him. 

I made a little birthday hat for Sunny. He was less than pleased but complied since he saw all sorts of treats in my other hand. 

Happy 7th birthday Sunny! He devoured this cupcake shaped doggie cookie. 

The treats have been coming all day. This was the first one. 

We took Sunny for a long walk on the National Mall. He chased a ton of squirrels... his favorite. It is quite hot in DC, with intense humidity. So when Sunny returned home, he sat himself on the air conditioning vent. 

His next birthday gift.... a big bone stuffed with cheddar cheese and bacon. 

Doesn't this look like Sunny? My friend sent it to me. She saw it hanging in a gallery in Arlington, VA. In many ways, this could be Sunny! The markings are off, but it most definitely reminds us of our birthday boy. 



Top 10 Facts about Sunny:

1. He is a border collie mix
2. Was born in South Carolina and abandoned on a highway
3. LOVES, LOVES Food
4. Favorite activities: long walks, hugs, lots of attention
5. Friendly with all dogs and people of all ages
6. He is my VELCRO dog. Peter refers to him as my "lover boy."
7. Favorite Treat: Bones
8. Rarely barks, but when he does, it is quite a sound!
9. Deposition: calm and gentle
10. Can't take a walk without hearing "what a beautiful dog" or "can we pet your dog?"