Saturday, November 7, 2015

Saturday, November 7, 2015

Tonight's picture was taken in November of 2005. A classic moment. Mattie loved painting with his feet in our living room. As you can see, I would put newspapers down on the floor, we would put paint on paper plates and then Mattie would have a ball. Don't ask how we didn't get paint everywhere! But we didn't! He created only artistic masterpieces!


Quote of the day: I have stayed true to that first idea that people can have a day in their lives that is very important and if they can reconnect with that day, reconnect with the people they were then, they can suddenly revive their emotions. ~ Victoria Wood


When Mattie was diagnosed with cancer, I stopped all of my professional work. I gave up teaching, working at the University, and basically put all the work I did in the professional community on hold. One of the positions I held was chairing the DC licensure board for mental health counselors, and though they could have easily replaced me. They did not want to, and I assure you I was gone from the board for about two years. They did not pressure me in any way, but when I was ready to return, they welcomed me back to work. The licensure board is the ONLY professional thing from my FORMER world that I still do today. Everything else I dropped and NEVER returned to.

Today, I was invited to a local mental health conference to present to attendees about the licensure process in the District of Columbia. This is not just any conference. It was for an organization in which I once was the president and then served for MANY years as their executive director. I was very tentative about returning to this event today. Mainly because I tend not to move back into the world in which I once existed. However, since this organization has requested my presence previously, and I usually say no, I decided that I really needed to fulfill this request given my role as the chair of the licensure board.

When I entered the auditorium today, there were many faces from my past. People who haven't seen me for at least a decade. They were all happy to see me and we had a very lovely time reconnecting. When I presented on licensure issues, I did not want to make it dry. Which it could easily be. Instead, I wanted people in the audience to participate and feel a part of this session. So I quickly engaged them right after I was introduced. It was a lively session, was asked a ton of questions by participants, and people were lined up to talk to me after the session ended! All I can say is I haven't been in the classroom in ages, yet my ability to engage with others and make them feel comfortable enough to ask questions and learn hasn't been lost. It came right back to me like riding a bicycle. For that moment in time, I felt like the old Vicki! Of course that isn't the Vicki that exists today, but it was nice to know that somewhere deep down I haven't lost that part of who I was. 

Meanwhile when we got home we had a ton of candy to sort. We received 200 pounds of candy yesterday from the River School and today this pile was donated to us by Beth Parker (formerly of Fox 5, and who did many interviews with us) and her neighbors. 

But these photos show the process we undergo with the candy. First the candy is either delivered to us or we pick it up. When we receive it, it is usually in boxes or bags and mixed together. 

We need to hand inspect each piece of candy and then sort it by type into Ziploc bags. We sort the candy because it helps to preserve the candy for longer as well as prevents the candy from tasting the same. 

Here is our current pile of sorted candy. This may seem like a nice collection, but just wait..... it will be growing as the days continue. 

Peter and I had a great time with these Snicker's bars today! I never saw a candy bar that featured adjectives on them! My joke is I would have loved receiving such a candy bar while in the hospital. Instead of having to express my feelings, I would have just held up a candy bar. 

Friday, November 6, 2015

Friday, November 6, 2015

Tonight's picture was taken in November of 2005. Mattie was three years old, however, I can honestly say I do not remember taking this photo. Nor do I remember where we were when I took it! This is one of several photos I found this week in our Shutterfly on line account. It is a lovely photo, so I am very happy to have it back in my files. Every weekend we took Mattie on some sort nature activity. He loved that kind of exploration and adventure, and because he loved it, I grew to love it too. 


Quote of the day: A single act of kindness is like a drop of oil on a patch of dry skin—seeping, spreading, and affecting more than the original need. ~  Richelle E. Goodrich


Goodrich's quote seems SO APPLICABLE to our candy drive. One person at a school or business may feel compelled to collect candy for us, and yet the energy of that one person spreads like a virus. I mean that in a good way. The energy is contagious and somehow the art of collecting candy becomes a team effort. 

We received this photo of Cate and Regan with over 230 pounds of candy. Candy they collected at Lyles-Crouch Traditional Academy, in Alexandria, VA. This is the second year in a row Lyles-Crouch has participated in our candy drive, and Cate is a loyal candy sorter of ours. The number of Mattie Miracle workers on this candy drive is growing leaps and bounds this year. 

Meanwhile in Washington, DC, I went to pick up the candy collection at the River School. This is the second year in a row that the River School is supporting us. I want to thank Deana O'Hara for coordinating this collection. This year the school donated 200 pounds of candy to us. So in essence today alone we collected more than 400 pounds of candy!

These orange bins are at my friend Ann's house. She is the designated drop off location for people to give us their candy. Candy which needs to be sorted. As you can see the bins are full and we have a lot of candy to process in order to free up these bins for more deliveries. 

I think this will be a record year for candy collecting for Mattie Miracle! I am thankful that several of my friends are helping with the collections because right now all of our homes are filled with candy. But it helps to have it dispersed rather than all stored in our home. Of course at some point a majority will land up with me, but initially it is wonderful not to be inundated with candy. Candy in bulk takes up space and also it can be a very sickening smell! 

Thursday, November 5, 2015

Thursday, November 5, 2015

Tonight's picture was taken in November of 2005. Mattie loved to jump on our bed and make himself comfortable. As you can clearly see here! I will never forget Mattie on the weekends. If he got up before us, he would run into our room, and make a b-line for my side of the bed. I can still see that little face staring up at me. 


Quote of the day: If you want happiness for an hour, take a nap. If you want happiness for a day, go fishing. If you want happiness for a year, inherit a fortune. If you want happiness for a lifetime, help somebody. ~ Chinese Proverb


This morning Peter and I went to MedStar Georgetown University Hospital to meet the head of the Breast Care Center. I suppose the majority of times one gets a referral from their doctor to see a specialist. In my case regarding this issue, I hand picked this doctor based on her credentials and what I read about her. Then when I talked to her staff prior to the appointment, they all assured me I would like the doctor. That she is very patient centered! All I know is I need to see it for myself, but getting the staff's reaction to the doctor to me is key. 

When I entered the breast center, I was less than impressed with the office staff behind the desk. However, as soon as I headed into the back of the office, I then met the actual medical staff. All I can say is wow! These were all competent, patient, and compassionate women. They were like a well orchestrated machine, and they capitalize on teamwork. When Peter and I met the doctor, she was extremely personable but confused by the pathology report from Virginia Hospital Center. Confused enough to contact Georgetown's pathology department to seek clarification. I am happy she did this because now that I have the accurate and correct terminology for the diagnosis, I am able to find many more articles and information about it! 

Regardless of the name, this is still a precancerous mass that has to come out. I am aware of the fact that some woman opt to leave such a mass inside of them and then follow it with scanning. But because the cells are atypical and 30% of woman with such a mass have been known to contract breast cancer years down the road, I don't want this inside of me. The doctor and I were on the same page and she also agrees with me that my other side needs to be given an ultrasound since this typically can show up in both breasts simultaneously. So I am going back to Virginia Hospital Center on Monday for the next scan. 

All I know is it would be better if this wasn't a precancerous mass, but overall, I am happy I have a plan, a competent surgeon, and then psychosocial support professionals at Georgetown to sit with Peter and come behind the scenes with me on the day of the surgery. Peter and I have the support of Linda (Mattie's child life specialist) and Debbi (Mattie sedation nurse) on November 18th, and I am absolutely thrilled. These women both work in pediatrics, but as I have always said.... if I get sick in any way, I want them by my side. I have already shared with Debbi my fears about sedation and she is very familiar with how Mattie reacted to sedation. So if I can't advocate for myself, I know she will!

This wonderful photo was sent to me by a mother and daughter team.... Michele and Kate. Kate is a student at Saint Mary's Catholic School in Alexandria, VA. Kate and her mom came to a sorting party we held last year and enjoyed it so much that Kate decided to organize a candy collection at her school and also sort it with friends! Amazing no? 

When they sent me this photo today, it said: "St. Mary's and the George Mason Elementary School LOVE Mattie Miracle!" I admire Kate's energy and commitment to our candy drive and I am thrilled she is spreading the message about Mattie Miracle to her friends and school community! She is an outstanding Mattie Miracle worker! 

Wednesday, November 4, 2015

Wednesday, November 4, 2015

Tonight's picture was taken in November of 2005. This was classic Mattie. Moving, doing, and building! He could do all simultaneously! He was the ultimate multi-tasker. Mattie loved to build big lego structures on wheels. So this large colorful block actually moved and Mattie was trying to serve as a tunnel, so that this big thing could drive underneath him with my help! Mattie always thought outside the box and he kept me on my toes everyday. There was nothing boring about Mattie, and he had a way of signing you up for his fun and antics!


Quote of the day: At times, we are the bridge that allows another to re-enter the world after a loss. Don't mistake it for more or its beauty may be lost. ~  Danielle Pierre

I came across this quote today, and though I wasn't purposefully looking for the content it is expressing, I felt it was important to talk about it nonetheless.  I feel Danielle is expressing herself based on her own personal experiences with loss. Though it sounds as if she was writing the quote from the perspective of a friend supporting a grieving friend. Whether she is the griever or the supporter of the griever, the quote is meaningful and spot on. Personally I believe she is writing the quote based on her experiences of having lost a "bridge" in her life after the death of a loved one. I say this because her quote seems like it is desperate to find and attach meaning to a friendship that once existed but doesn't anymore. One can't possibly accept that a friend would abandon them through the grieving process, so instead, she has found a way to find the beauty through the pain. 

Sometimes the friendships we make in grief seem so profound, so intense, and transformative. Almost like no other friendship we had before. After losing someone so profoundly important, we tend to muddle through grief and the world initially by clinging onto those who throw us a life line. Perhaps people who went through the loss with us, supported us during it, and understand the nature of the bond that was severed by death. These people who help us through the most raw aspects of grief are our bridge! These bridges seem like they will always be a part of our lives, that the bond you share transcends time and other relationships, and that you will always have this person to turn to moving forward. But Danielle aptly describes this support and what can happen to it over time. Sometimes these friends, like any bridge disintegrates. 

Yet facing the fact that friendships you thought were so profound, so meaningful, and so important to you are only temporary can be hard to stomach. It is hard because when these bridges fall apart, the griever is left with two problems. The original grief from the death of a loved one and now compounded grief over the loss of a friendship. Perhaps as you read what I am writing you have absolutely NO IDEA what I am talking about and can't relate. Fortunately or unfortunately as the case maybe, I have had the opportunity to talk to many grieving parents through the years, who get exactly what I am talking about. In fact, if I used the terminology of a bridge, I bet they would get it right away. They would get it because so many of us who lost children also lost our friends and personal networks. This is not a Vicki problem, it is a situation problem. Not that this makes me any happier knowing that I am not alone. It doesn't. 

Today, ONE DAY LATER, I got a call from the radiologist who performed my biopsy on Friday. She called to share the results with me. I did not hear the phone ring, so she left a message. When I returned her message, I got the general breast center's answering service. Personally I just laughed! I laughed out of disgust, not happiness or funniness. Imagine if I did not know the results yet and I was waiting for this individual. Desperate to get a hold of her, only to land up in a voice mail, not knowing when I would get a call back!? What a commentary about our health care system! 

This morning I received a photo of this wonderful letter below that was sent to me by my friend Heidi. Heidi does a collection of candy for the Foundation's annual drive in her neighborhood. One of her neighbor's left this message for Mattie Miracle and Heidi passed it along to me. I found this letter deeply touching and I feel we need more Annabelle's in our world. Annabelle is in 5th grade and after hearing about our candy drive decided to donate all of her Halloween candy (10 pounds) to us. She feels we need it more than she does. The letter is priceless and written in ORANGE, Mattie Miracle's color. Annabelle is a true Mattie Miracle Worker. 

The letter says:

Dear Mattie Miracle, My name is Annabelle. I'm in 5th grade. I go to the French Lycee (lee-say). My parents told me a few nights ago that I should give some candy away, but I reached down into my heart and decided to give it all away. There is 10lbs of candy! You deserve it more than me. 
Signed, 
AC

As you can see the candy comes in by the BAGS full! Starting tomorrow, several of our devoted volunteers will be gathering at homes and having sorting parties to start processing the volume that is coming in! The sorting parties are important because they help to hand inspect the candy as well as sort the candy by type so they don't start tasting like one another when stored in the same Ziploc bag. You would think that the sorting parties would be labor intensive and tedious, but on the contrary they are lively, people love chatting, sorting, and bonding over a great cause. 

Tuesday, November 3, 2015

Tuesday, November 3, 2015 -- Mattie died 320 weeks ago today.

Tonight's picture was taken in November of 2005. I have just found all these wonderful Fall photos from 2005, by going to our Shutterfly account. I am SO THRILLED to have access to these photos which I thought I lost. This photo is priceless. We took Mattie to the National Geographic Museum in DC, and he posed alongside this primate! Got to love that smile!


Quote of the day: There is good news tonight. ~ Gabriel Heatter


Getting sleep has been next to impossible since I realized I had some sort of mass inside of me since Friday! Waiting for the results today was challenging. But fortunately I had a lot of experience with this, when Mattie was sick. So in essence I almost feel like I have developed the skills to manage this waiting and anxiety. Yet I was on the edge and wouldn't leave our home today, because I knew I would be getting a call from the doctor. My doctor's office called me this morning to update me that the pathology report hadn't come in yet. But that they would be continuing to check! So I felt good that they were on it, so I did not have to be monitoring them! 

However, around 3pm, the phone rang and it was my doctor's office. They let me know that I have a precancerous mass and it has to come out. Honestly I sensed as of Friday that whatever was in me had to COME OUT! Mainly because I never felt such intense internal pain. It did not feel right, and when it was impacting my ability to raise my arm, that was a red flag. In fact, after my biopsy on Friday, I emailed Linda (Mattie's child life specialist at Georgetown) and told her I would need her help in getting an appointment with a breast surgeon. So as of today, thanks to Linda, I got to talk to the assistant of the head of breast surgery at Georgetown, who helped me book an appointment for Thursday at 9am. I had that appointment before the pathology report! Usually it goes the other way around, which is what I am saying..... I did not need that report to know that this wasn't normal. 

In the midst of waiting and getting these results, I received candy updates and photos. Our friend Gabby is organizing a candy drive at her Club in Maryland. Gabby is the daughter of one of Mattie's sedation nurses, Norma. Norma and Gabby have attended EVERY Mattie Miracle walk! In fact, when I would have rough moments at the hospital, Gabby would bake things for me and send them in with her mom! Get the picture about these special ladies?!

In addition, one of our friends sent us this link today to the Politico! The Mattie Miracle Candy Drive is mentioned in it! The word is getting out and our mission of candy for a childhood cancer psychosocial cause is catching on!

http://www.politico.com/tipsheets/politico-influence/2015/11/influencers-bundle-for-clinton-bush-aba-hires-cio-group-asks-for-probe-of-adelson-contributions-211070

Monday, November 2, 2015

Monday, November 2, 2015


Tonight's two pictures were taken in October of 2005. Mattie was three years old and doing something he absolutely LOVED. Which was painting with his feet. I would set up a whole painting station in our living room. Do not ask me how we did not get paint everywhere. But 

somehow we didn't. Mattie was very careful and neat by nature, which was why we were two peas in a pod. Yet he did like getting messy and doing very messy activities, but appreciated that the mess shouldn't travel to furniture and walls. When Peter saw this photo tonight, his immediate response was.... look at Mattie checking out his feet and evaluating the finished product!


Quote of the day: There could have been no two hearts so open, no tastes so similar, no feelings so in unison. ~ Jane Austen


When I saw Jane Austen's quote tonight, I immediately thought of Mattie. Though I am quite sure when she wrote it, she did not have a mother and child in mind. Yet for Mattie and I, we just understood each other and communicated and felt in similar ways. We were both bold, appreciated the ability for free expression, and we were honest about our feelings and thoughts with ourselves and with other people. It is hard to be without this special connection in my life. 

This morning I got a call from the hospital following up with me on the incision from the biopsy I had on Friday. While talking with the technician, I asked her when my results would come in. They mentioned on Friday that they could be available today. However, that wasn't accurate. It takes three BUSINESS DAYS to culture the tissue, and of course Saturday and Sunday don't count. My joke is don't get sick on a Friday, because you are placed on hold until Monday! It is the state of our healthcare system. Avoid Fridays, Saturdays, and Sundays! The rest of the days.... go right ahead and have a problem. The unfortunate part is our bodies do not follow the needs of the healthcare system! 

I had the opportunity to meet the lady in this photo today. This is Stella and she is my friend Heidi's sister. Stella lives in California and is visiting her sister for a few days. Stella has taken a liking to candy sorting and is sorting up a storm! 

To me this expression is priceless! Stella thought she finished sorting all the candy that came into Heidi's bin today, however, when she went back outside, she found the bin was filled up again! It speaks to the generosity of candy donors in Heidi's neighborhood. Heidi posts a message about our candy drive every year in her neighborhood listserv, and within one week, she has hundreds of pounds of candy! It is remarkable. 

While the above bin is at Heidi's house, this orange one is at my friend Ann's house. There are literally bins on peoples' front porches all over town! That is how vast this collection is becoming! We have Maryland, Virginia, and DC covered! 

Sunday, November 1, 2015

Sunday, November 1, 2015

Tonight's two pictures were taken in October of 2005, around the time of Halloween. Before Mattie was admitted to the hospital for sepsis from an ear infection. Mattie never went trick of treating that year because he was admitted to Virginia Hospital Center. Yet he and I worked hard on designing this wonderful calico costume. Even down to the fuzzy ears and M name tag! 

It has been bothering me that I had no photos of Mattie from October 2005, so I went back to our on-line photo account with Shutterfly and found them. Who knows where they are on my computer. I lost them. But thanks to Shutterfly, I am downloading photos I haven't seen in years. In October, my students at the George Washington University used to host a Halloween party for children all over the DC area. They always invited Mattie. I am happy to see that Mattie did go to that party before he got sick. This photo shows us walking to the University party.


Quote of the day: Waiting hurts. Forgetting hurts. But not knowing which decision to take can sometimes be the most painful...~ José N. Harris


Waiting for results to me is very nerve wracking. It is hard to not play out scenarios in one's head, and the what ifs can truly provoke anxiety. The radiologist promised me she would call me tomorrow. But I am NOT a phone person on a good day, much less on a day where I could be receiving results. All I know is I can only take it one step at a time, and deal with it as information is presented to me. Because we needed a diversion today, we went to the movies. That may not sound earth shattering to the average reader, but for me this must mean I am in crisis. I never go to the movies, and Peter and I reflected the last time we were in a theatre together, had to be 7 years ago. Needless to say, the movie we saw, Our Brand is Crisis, was horrible, and it further reminds me why I don't go to the movies anymore. 

This is the second time in my life in which I have had a cancer scare. In February 2012, I had my first scare with numerous masses in my pelvis being identified. After having a CT of the pelvis, a radiologist said that the masses were indicative of adenoma malignum. A very aggressive cancer. Again, my world stopped and I lived with this nightmare for two years. The masses are located in a position that they can't be biopsied. So instead, they were followed month to month and then every couple of months for years. Until finally they were deemed cysts. With each scan, I was living on the edge, and I didn't need much help since I was already over the edge losing Mattie. Now apparently losing my only child and dealing with the pelvis cancer scare isn't enough. I need a second one! 

The highlight of my day was receiving two candy drive collection photos. This photo was sent to me by my college roommate, Leslie. She coordinates the candy drive in Maryland and has done this for years. Apparently the candy you see here was collected in the first 15 minutes of Leslie's drive today!

This photo was taken in my friend, Heidi's home. Heidi has been instrumental in our candy drive for years. She announces our drive on her community listserv, and collects and SORTS hundreds of pounds a candy for us each year. She even recruited her sister Stella (pictured here) to sort candy today! A real family mission!