Mattie Miracle 8th Annual Walk & Family Festival was an $88,000 Success!!!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

Random Shots of Mattie, Family and Friends

December 12, 2017

Tuesday, December 12, 2017

Tuesday, December 12, 2017 -- Mattie died 430 weeks ago today.

Tonight's picture was taken in December of 2003. Mattie was visiting my parents in Los Angeles for Christmas. Their house had wonderful fruit trees in the backyard and Mattie was intrigued by the oranges and grapefruits. He loved to pick them, sort them, and play with them! Hours of fun, and no toys were needed!!! Farmer Brown..... hard at work!


Quote of the day: The better I get to know men, the more I find myself loving dogs. Charles de Gaulle


Once a month, Sunny goes for grooming. He has a lot of fur and though I brush him daily, it takes a lot to maintain him. I met Sunny's groomer over a year ago. She is very good with him and after she is done with him, he looks and smells wonderful!

Today while he was being groomed, she sent me this cute photo. Sunny has come a long way. When he first started getting groomed, he was deathly afraid of the wash basin and forget about the table that is used to trim his fur. He HATED it!!! Now you can see he is acclimating to the process, still doesn't like it, but looks happier than before!

Sunny's groomer isn't around the corner for me. It takes me 40 minutes each way to drive to her. Naturally I could get another groomer who is closer, but since Sunny has a good fit with her, I manage. 

December 11, 2017

Monday, December 11, 2017

Monday, December 11, 2017

Tonight's picture was taken in December of 2003. Mattie was a year and a half old and we celebrated Christmas that year in Los Angeles with my parents. My mom set up a baby tree for Mattie to decorate. Mattie thought it was very special to have his own tree, not to mention a tree that featured many Mattie presents!


Quote of the day: There are only four kinds of people in the world. Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver. ~ Rosalyn Carter


I happen to love Rosalyn Carter's quote! I remember reading it in her 1995 book entitled, Helping Yourself, Helping Others. She wrote this book after having the perspective of being a family caregiver for her grandfather and father. Given my own family's experience with caring for my maternal grandmother after she had a stroke, I knew that I wanted to enter my doctoral program in counseling (years ago) and focus on researching this topic and gaining more experience with this special population. 

I love the Family Caregiver Alliance, a non-profit based in the DC area. I remember turning to them many times for data and input when I was writing papers for my graduate school courses. If you are interested in learning more about caregiving, the responsibilities, demographic data and challenges, go to: https://www.caregiver.org/caregiver-statistics-demographics.

For the past month, Peter and I have been caring for our neighbor who is an older adult. She had a terrible accident, in which someone walked into her very fast and plowed her over. Causing her to fracture her arm and shatter her knee. Needless to say, she needs a lot of help. Typically such help is provided by a significant other, one's children, or other family members. But what happens when none of these people are around or available? What happens is exactly what Peter and I are experiencing now! I am not sure what would have happened if we did not step in to help our neighbor. As it is, we have been doing this for a month and there is no end in sight. We just learned today that her doctor told her she will be unable to return to her normal life for another five months. 

The problem with all of this is Peter and I are doing all the caregiving, but we have absolutely no decision making authority. Which is what most family caregivers typically have, since they are providing the majority of care and have the insights into the daily happenings of the caregivee. We are unable to interface with her doctor or her therapists. This puts us at a great disadvantage because I am quite sure none of them understand how dire I view this situation. 

Caregivers on average are reported to spend 13 days each month on tasks such as shopping, food preparation, housekeeping, laundry, transportation, and giving medication. In one month's time, I would say we spend EVERYDAY on these tasks, not just 13 days in one month. I have to admit I am thoroughly exhausted and am having trouble getting my own work done because I am either cooking, cleaning, grocery shopping or doing laundry. 

My neighbor's situation makes me evaluate my own life. Having lost Mattie, not only effects my current life, but also my future trajectory. As we age we rely more on our children. Since I lost mine, I need to think about how Peter and I will be able to age and be taken care of. Which is why I have insisted on getting a long term care insurance policy. We are looking into it now, and the insurance agent on the phone questioned why two people so young are thinking about this now! He actually commended us for thinking ahead. So why is long term care needed? Because health insurance/Medicare DOES NOT cover home care..... which are all the daily tasks needed to survive. Long-term care insurance generally covers home care, assisted living, adult daycare, respite care, hospice care, nursing home and Alzheimer's facilities. If home care coverage is purchased, long-term care insurance can pay for home care, often from the first day it is needed. Without long term care insurance, such care can be very costly and impossible to sustain. 

Given all we managed with Mattie's care, it seems impossible to think that we are in another intense caregiving situation now. One that I really would never have guessed would have landed on our doorstep. Peter and I are going away on Saturday to meet my parents in Miami, to then board a cruise. I truly need to get away, but before we do this we are trying to put safeguards in place in help our neighbor. I just think it is remarkable that there is no follow up care or assessment to truly determine how safe this woman is to live in her own home. Yes she saw the doctor today, but unless asking direct and the right questions, the reality will not be uncovered.

December 10, 2017

Sunday, December 10, 2017

Sunday, December 10, 2017

Tonight's picture was taken in December of 2008. This was the last time we decorated for Christmas in our home. I would not have done anything that year, but Mattie's child life specialist gave Mattie that cute tree. Then others gave us poinsettias and things, so literally Mattie took all the items given to us and created this display practically in the middle of our living room. Do notice the Christmas train around this whole display. This was a train Mattie and I bought together years ago, when he was well. It became a tradition, that every year this train track would be assembled around the tree. This was the cutest train. It literally had Santa as the conductor, it puffed out smoke, and played Christmas music as it went around the track. It was so memorable that I can still vividly remember the train and how animated Mattie got seeing it going around the tree. 


Quote of the day: Tradition is a guide and not a jailer. ~ W. Somerset Maugham



I remember several years ago, I left town around Christmas and was unable to decorate Mattie's tree before I left. Needless to say, I wasn't happy about this and since that time, we have decorated Mattie's tree each Christmas. We try to decorate it for each season and of course special or milestone moments like Mattie's birthday and the day he died. 

Today was freezing outside. With the wind, it felt like it was in the 20's. Don't let the sun fool you in this photo. Peter and I cleaned up Mattie's tree and replaced the bow around the tree with a Christmas bow and of course put ornaments on the branches. 
I tried to take a close up of some of the wonderful items on the tree. I am very grateful that our friend Margy also visits the tree and adds meaningful ornaments that I know Mattie would have loved..... like hearts, birds, chimes, and turtles! 

Literally there is a bird house on the tree, chimes (which is why I call it the twinkling tree), Lego pieces, butterflies and of course toy cars!


Mattie's tree! I can't stand that Mattie's tree is right near all the play ground equipment. I would love to be able to see the tree without this yellow thing in the background. Despite no leaves on the tree, it has shiny snowflake ornaments and touches of red, that make it festive. 
When I came home from Mattie's tree, I happened to notice I had a friend sitting on my jacket. Do you see the ladybug? Peter snapped a photo, and we both took that as a sign from Mattie, the king of the bugs. 














December 9, 2017

Saturday, December 9, 2017

Saturday, December 9, 2017

Tonight's picture was taken in December of 2008. Mattie was home between treatments and requested all sorts of Chinese food. I personally love how Mattie wanted to use chopsticks given that three out of his four limbs were recovering from surgery. Mattie was sitting on our couch, which typically is in front of our picture window. But a hospital bed was in our living room, in the exact location where the couch used to be. Our whole home looked like a hospital in a way, but given all we were balancing it made no difference to any of us. What I do remember, was I learned all the wonderful on-line clothing companies which sold clothes with velcro enclosures. These types of clothes were a God sent, since there was no way I could help Mattie put on pants or jackets without velcro. He couldn't get his arms into jackets or legs into pants. 


Quote of the day: Thank goodness for the first snow, it was a reminder--no matter how old you became and how much you'd seen, things could still be new if you were willing to believe they still mattered. Candace Bushnell


Washington, DC experienced its first snowfall for the winter. The forecasters as is typical blew the prediction as the snow did not start or stop as was reported, nor did DC get any notable  accumulation. Keep in mind that in DC, an inch can shut down the city. 

On Peter's walk this morning with Sunny, he snapped this photo from Washington Harbor, looking at Rosslyn and the Key Bridge. A real snow sky!

This is a snapshot of Mattie's memorial garden in our commons area. Peter and Mattie planted many of the trees together in this spot. But notice the garden hooks holding three bird feeders. I gave these bird feeders to my friend Mary, as she was dying. I wanted her to be able to look out her window and see birds. When Mary died, I moved this set up to Mattie's garden. When I see the birds flocking around the feeders, I think of my friend Mary. 
Peter and Sunny headed out on a walk, and I snapped a photo from Mattie's bedroom window! It is hard to see but the snow was coming down. Sunny grew up in South Carolina and he is NOT a snow fan. He manages through it if it is falling down, but he doesn't like accumulated snow. He doesn't like walking on top of snow at all. It is actually very funny to watch him! 











The highlight of my day today was I went out to the Ritz Carlton for high tea. I have always wanted to do this. There was a pianist playing holiday tunes in the background and the room was filled with people, all enjoying time with each other. You got to pick your own loose tea, and a lovely tea pot sat on a warmer in front of you! On a cold snowy day, this was very special. They serve you all sorts of tiny treats, from sandwiches to cookies, scones, and pastries! It was a two hour break that was very needed and memorable. 

December 8, 2017

Friday, December 8, 2017

Friday, December 8, 2017

Tonight's picture was taken in December of 2008. Mattie was home from the hospital for Christmas time. Not the best of times or happy memories, despite it being a holiday. In fact, from Mattie's cancer treatment, what resulted for me is a strong dislike for Thanksgiving and Christmas. Mainly because our last holidays together were horrific. Something you can't even imagine. Mattie was beyond miserable, in pain and dealing with a host of mental health issues. On that particular day, this wreath was dropped off for Mattie at our home. It was created by all his friends in first grade (a school year he never participated in), and each leaf on the wreath was made of paper, and each piece of paper contained a written message for Mattie. We had this wreath hanging on our front door for the longest time. 


Quote of the day: The psychosocial issues do not end when the medical treatment does. ~ Victoria Sardi-Brown


Headache and all, I ran a 6 hour long licensure board meeting today. We had about 20 people from the public come before the board, so needless to say, I am tired. But that is only one of my jobs to complete for the day. My other hats include Foundation leader and caregiver, and that work now begins. 

I mentioned on the blog a week or so ago, that the editor of Cure Today reached out to me. They wanted to write an article on Mattie Miracle. Since I have had people interview us before with less than 100% accuracy, I decided to do this interview by email. That way I could write our responses to the questions and the chances of the content accurately depicting the Foundation would be high. The article came out today and I posted a link to it below. Despite writing each response thoroughly, something did get lost in the translation. You don't get a chance to proof someone else's article, but I did want to point out the correction to my readers. 

As the article points out, in March of 2012, Mattie Miracle voiced its vision for the need for evidence based psychosocial standards of care at our Capitol Hill Symposium. Mainly because psychosocial care varies greatly by treatment facility and we want to see a more standardized approach to this important care. Care and support that should not only be offered at diagnosis, but throughout the cancer journey, which includes survivorship or bereavement care. The article implies that the Symposium was hosted to DEVELOP Standards of Care. Not exactly! The Symposium was designed to call attention to the importance of psychosocial care for childhood cancer and to highlight cutting edge research and the issues children and family face. The Symposium served as the spring board for our vision. After the Symposium, Mattie Miracle assembled a team of over 80 health care professionals from the US, Canada, and the Netherlands. This team worked for three years on the rigorous methodological process to create evidence based Standards. Which of course resulted in the publication of the Standards in 2015, in a top tier medical journal, Pediatric Blood & Cancer. A publication Mattie Miracle funded and paid for open access, so the public can download the articles for free indefinitely. 

Addressing The Psychosocial Side Of Childhood Cancer:

https://www.curetoday.com/articles/addressing-the-psychosocial-side-of-childhood-cancer-

December 7, 2017

Thursday, December 7, 2017

Thursday, December 7, 2017

Tonight's picture was taken in December of 2008. Mattie was sent home for Christmas. I suppose the thinking was that children wanted to be home for the holidays rather than in the hospital. Unfortunately the holidays for us were beyond miserable. Mattie was in terrible pain, exhibiting PTSD symptoms, and was truly depressed. Our days at home did not look like photo, but given that friends had dropped off these holiday items (reindeer antlers, a red Rudolph nose, etc) for Mattie, Peter decided to dress up and try to liven the spirit in our home. It worked but only for a few minutes.... long enough to take this photo. 



Quote of the day: Selfishness must always be forgiven you know, because there is no hope of a cure. ~ Jane Austen


I am in week two of dealing with an enormous cluster headache. This makes doing any activity MUCH harder. In addition to the work that we do for the Foundation, which is a full time job, Peter and I have been doing intense caregiving for our older neighbor for the last three weeks. Our neighbor fell and needed surgery on her arm and leg. Both of which are immobilized, making it impossible to do even the most basic of activities. She can't cook, cut food, lift anything, do her laundry, leave her home without supervision, and the list goes on. However, these last three weeks have been an eye opener, because our neighbor lacks the support of family or close friends. 

One should be asking.... how was she discharged from a hospital? It is a good question, because I would hope despite a patient insisting on wanting to go home, that a hospital would have some responsibility to ensure that proper care can be provided at home. Taking a patient's word for it, SHOULD NOT count. If Peter and I did not step in over the last three weeks, I am quite certain this situation would have gone dire ASAP. As it is, it is still hanging on by a thread. 

What I am physically aware of however, is that between round the clock Foundation work and caregiving, this is a very bad combination. What does caregiving for her entail..... laundry twice a week, grocery shopping twice a week, ALL dinner preparation, clean up of dishes, changing of her bed linens, washing her hair, picking up her mail, getting her prescriptions, throwing out her trash, etc. It is a significant responsibility and effort on our part, of which we are doing it all without compensation for our time or the items we are purchasing. When I wonder why I am tired at the end of the day, I don't have to think about it for long. 

But then I reflect on our care community when Mattie was ill. Some of the people who helped we did not even know, yet this group of people were totally committed for over 14 months. Given what I am experiencing now with my neighbor, it makes me pause and reflect on how deeply grateful I am and that I am in awe of the community that Mattie built. Not that I wasn't aware of this before now, I always was and will always be grateful to Team Mattie, but now I have an even greater appreciation for just how stellar our friends are. 

December 6, 2017

Wednesday, December 6, 2017

Wednesday, December 6, 2017

Tonight's picture was taken in December of 2008. Mattie was in the clinic and had just received a dosage of his experimental immunotherapy treatment. Don't get me started on that medication..... in my opinion it caused more harm than benefit. In any case, after any dosage, Mattie always was ill, with a terrible fever and chills. But not just any chills, chill that are called rigors. Rigors are an episode of shaking or exaggerated shivering, and with Mattie it almost looked like a convulsion. That was how severe it appeared. In any case, while having a bad reaction, Santa came in to visit children in the clinic. Santa had guidance from Linda, Mattie's child life specialist, and he picked all the items Mattie would like. Despite how badly Mattie felt (as you can see, he could hardly lift his head from the pillow in his lap), he still greeted Santa and thanked him!   


Quote of the day: People tend to dwell more on negative things than on good things. So the mind then becomes obsessed with negative things, with judgments, guilt and anxiety produced by thoughts about the future and so on. ~ Eckhart Tolle


Tonight's quote captured my attention. Mainly because I am one of those people who focuses on the negative. I am not sure people who interact with me, would classify me in this way. But I do, because I am! I honestly can't remember who I was prior to Mattie getting cancer, but I would like to say I wasn't always this way..... the negative wasn't always on the forefront of my mind. 

I do think losing an only child to cancer, has clouded my perspective on life. I think at one time, I may have had the crazy notion that we had control over our own destiny if we worked hard and led a "good" life. What a joke! So much about life is out of our control, and when you see children getting cancer and dying, then I think such a reality rocks your world. Unfortunately the tremors from this rocking reverberate through your days, weeks, and years continuously. I do think however, that grief and loss do become even more heightened over the holidays. The mere presence of Christmas trees, wreaths, and decorations are bittersweet for me. 

I was chatting with a friend today, who like me, also focuses on the negative. We are very aware of the fact that the majority of the world is not like us. Thankfully. I can firmly say this because with the amount of accidents, catastrophes, natural disasters, and losses we hear about and experience on a daily basis either personally or through the media, if everyone was like me, we would have one depressed world. 

Now as tonight's quote relates to grief and loss...... When you lose a loved one, this loss is your whole world. So much so, that you can't understand why others around you are functioning, while for you, your mind and heart are spiraling downhill. In fact, you observe others are celebrating, smiling, and going about their daily routine, while here you are in shock, grieving, and not knowing how you are going to get through the next minute. I am very sensitive to how people interact with people who have lost a family member or close friend. Yes the lose maybe acknowledged by others on a cerebral level, but that is definitely different than emotionally feeling and living with the loss. So many can't and won't live in the negative with you, and this is ever so obvious to me whenever I bring up the topic of child loss. This topic makes people edgy, so much so, that platitudes, redirection, and the positive spin are the bi-products. I totally get why people want to spin the horrible into something positive, but the ironic thing is the only thing this accomplishes, at least for me, is to further focus on the negative. The negative being....... my differences, people can't relate to me, I can't relate to them, and the divide increases. 

So when people tell me on a rare occasion that they only see the negative, all I can say is I get it. I don't sugar coat it, but acknowledge that this is the reality for some of us. When I say some of us, I am not implying that only those going through child loss are like this. There are many reasons why people all around us may focus upon the negative. The issue as I see it, is so many won't accept this statement, and want to change it or our outlook. I realize it is sad to hear that one primarily sees the negative in life, but to me it is far sadder that this can't simply be acknowledged and heard. I have found acknowledging this reality does in a way make one pause! Pausing allows the person who feels this way to be heard, it allows what is being said to sink into the listener's head, and also by not reacting with a remedy or band-aid, this is in essence saying...... I hear you, accept what you are saying, and I am not running away from this news.