Friday, March 30, 2012

Friday, March 30, 2012

Tonight's picture was taken in May of 2005. Mattie was three years old, and doing one of his favorite things.... playing with trains! Mattie loved ALL kinds of trains, and here he was playing with his Thomas the Tank engine train sets. Mattie would construct elaborate set ups, throughout our home, and what was funny about this picture was Mattie was constructing and playing, while having a Thomas video going on in the background. Mattie for the most part did not like TV. He was the furthest thing from a couch potato you could imagine, and rarely (unless he was sick) would you find him sitting in front of a TV. Mattie was a doer, a creator, and the ultimate multi-tasker!


Quote of the day: Never give up on something that you can't go a day without thinking about. ~ Unknown

Today was another whirlwind, on top of a night of very little and poor sleep. I had several tasks to accomplish today, and in the midst of that had another acupuncture appointment. I think she is coming to the conclusion that acupuncture isn't working for me. Because if it was, I would have been seeing great improvements by now. Last week, my friend, Heidi, gave me an article in The Washington Post that chronicled the lives of daily headache sufferers. Apparently people like myself make up one percent of the population (big surprise!) and such headaches are reported to be associated with a particular point in time. In fact, all sufferers can tell you the day their first massive headache began. Mine began on April 3, 2002, right after my epidural in labor and delivery. However, the article did a great job at discussing how difficult such symptoms are to treat and how alternative therapies, like acupuncture, have been shown to be ineffective. I am happy Heidi gave me this article, because it has helped me to see that the issue isn't just with me, but with most chronic headache sufferers. The highlight of my day was I had a chance meeting with my friend Mary, who lives right around the corner from Ann. Mary had just arrived home from picking up her two girls at school. I got out of the car, and Emily (Mary's youngest) came up to me and gave me a huge hug. In fact, if she was any stronger she would have lifted me right off the ground. I couldn't help but think of Mattie, because Mattie gave the same kind of special, intense, and loving hugs. They are hugs with feeling! I told Mary tonight, that this hug was the highpoint of my day, a highpoint which I haven't experienced in a long time. Parents take these hugs and hand holding with their children for granted because they may get them often or everyday. But when you don't get them anymore because your child has died, then you realize what is missing in your life. I have spent the last six afternoons and evenings with Ann's mom, Mary. Tonight was my last visit for a while, and we began reading a second story together. Mary was listening with her eyes closed but was following along. As was her roommate. Her roommate is a cutie and got herself tangled up in her IV and Cather tube. So at one point, I stopped reading, and went over to her to help her out of her spider web of tubes. Having handled all of Mattie's IV's and tubing, I am very familiar with maneuvering things around. Mary's roommate typically doesn't like to be touched or fussed with, but I have found if you talk her through what you are doing and involve her in the process, a lot can be accomplished. It gets back to the need to empower a person, regardless of their age, disability, or issue. Tomorrow evening, Peter and I will be at the Molecule Salon in DC. Molecule is hosting a fundraiser for the Foundation and we will be there greeting attendees, saying a few words, and processing donations. I am very grateful for the Salon's initiative to host such an event and to support our mission and goals. All of which cost money and therefore we welcome the opportunity to build our support network in this wonderful way.

Thursday, March 29, 2012

Thursday, March 29, 2012

Tonight's picture was taken in May of 2005. Mattie was three years old and that weekend we took him to the DC Aquatic Gardens. Along the board walk, we stopped and took a picture. Mattie was a bundle of energy and what you may not realize was that I was practically holding Mattie in place on the bench in order for Peter to snap a picture of us!

Quote of the day: The mother's battle for her child with sickness, with poverty, with war, with all the forces of exploitation and callousness that cheapen human life needs to become a common human battle, waged in love and in the passion for survival. ~ Adrienne Rich


I literally was in three different states today..... DC, Maryland, and Virginia. Not an unusual commentary from a person living in my area, but it was definitely a lot of driving around for me. Mattie Miracle is having a fundraiser this Saturday, and as such, I had to pick up a credit card processing machine today in Virginia to handle on site donations. Then I had to jump back into the car and go to Maryland, where one of my doctors is located. That drive from Virginia to Maryland took me an hour alone!

I met with this doctor for an hour, and I have to say, I left more confused than when I went in. Bottom line, if I still need to be monitored monthly by scans, then why do an invasive procedure? A procedure which would require hospitalization, general anesthesia, and a whole list of potential risks. I am greatly simplifying the process, but in the end, it comes down to what will I really get out of this? The issue as he expressed it to me today, is I am like a snowflake. Meaning there are not many others like me floating about. I have a very unique and very rare issue. Which is why NO ONE really knows how to treat it! Lovely!

When I got out of this appointment I learned that Ann's mom, Mary, was having a hard day. Her caregiver got a hold of me and updated me about the problem, the day, and what I would be finding when I got to Mary's room. So I left Maryland, and drove back to Virginia. Another hour in the car!

I spent two and a half hours with Mary. Mary's roommate also enjoyed my company. I am not family to Mary, but somehow in her own way she relates to me and trusts what I have to say. Mary battles with dementia, and yet on some level I know she gets the fact that we both lost a son and I helped her through her husband's death. After Mary and I talked a while, I assessed what was bothering her. Mary is worried about one of her family members who is ill and living in a different state. I will spare you the details, but I have found with Mary that placating her and telling her everything will be okay without giving her details, is not effective. Which is fine by me, since I always believe honesty is an important policy and is the cornerstone of a friendship. So I found by telling her what was going on with her family member, explaining his upcoming procedure, and reassuring her as to why it had to be done, alleviated her stress and anxiety almost instantaneously. Mary, just like all of us, feels empowered when armed with information. Over the years with Mary, I have utilized this line on her which is.... "There is no need to worry. Believe me when it is time to worry, I will be the first one to let you know! But until then you have to believe what I am telling you is the truth." To bring closure to that topic, I then told Mary we have to take it one day at a time, and just appreciate the information we know today. We can't worry about what we don't know. The irony is Mary has been mainly mute all week, but her fear and concerns today, enabled her to verbalize for quite some time.

Mary then turned to me and literally told me she is enjoying the story I have been reading her this week. I suspected she was listening and absorbing it, but today confirmed my beliefs. So I took the book out and Mary and her roommate were listening to the story. Today we finished the short story entitled, The Christmas Box by Richard Paul Evans. I read that story in the 1990s, and I found it so touching that I brought it in to share with Mary. Why I chose it was because the main character's name is Mary and Mary shares something in common with both me and Mary. The character lost her child! By the time I got to the last chapter, the book had me in tears. I continued reading but the book wore me out emotionally. When I read it in the 90's the story was touching, but when I read it now in 2012 (after having lost a child), the book was like a dagger. I related to the character's story in great detail. I have attached a link to the book below, if it interests you!

http://www.richardpaulevans.com/books/the-christmas-box

Adrienne Rich's quote tonight, about a "common human battle" really caught my attention and truly speaks to the book I read to Mary. Because the main character in the book was so profoundly changed by the death of her daughter, that she made it her mission to open the eyes of another parent. A parent who was lucky enough to have a healthy child but lost sight of this greatest gift. He was focused on his business and in the process spent little to no time with his family and saw nurturing his daughter as a distraction from work. Mary, the character, illustrates that the death of a child is so profound and life altering, and yet regardless of time, the scars and memories are still there. Scars which can anger us, frustrate us, and cause us to take on this "common human battle." The battle for us is to get other parents to understand how lucky they are to have their life's greatest gift alive and healthy. For some of us, that gift was not guaranteed for our lifetime.

Wednesday, March 28, 2012

Wednesday, March 28, 2012

Tonight's picture was taken in April of 2005. Mattie was three years old and trains were one of his favorite things to play with back then. In fact, he decided to build a track and TAPE it to my floor in order to play and run his electric trains. At first this type of set up throughout our living and dining rooms made me uneasy, but over time, as I suppose happens with all parents, you learn to deal with the things and the chaos all around you, as long as it provides the appropriate stimulation to engage and delight your child.


Quote of the day: Prejudices, it is well known, are most difficult to eradicate from the heart whose soil has never been loosened or fertilized by education; they grow there, firm as weeds among rocks. ~ Charlotte Bronte

Today seemed like an endlessly long day! I began my morning by returning back to the George Washington University, my Alma mater. A doctoral student had reached out to me to learn more about the Foundation and also to ask me questions about how to secure a mental health internship in a hospital in order to work with children who have chronic and life threatening illnesses. There are NOT many graduate students who I have come across in my many years of teaching who are interested in caregiving issues, issues pertaining to older adults, and health related crises. So it was nice to meet this young woman today and to try to help her.

After that meeting, I drove to a bakery in Georgetown called Georgetown Cupcake. Last week I wrote a long email to the bakery explaining who Mattie Miracle is and I asked them to donate cupcakes to an event we were hosting at the Hospital today. The event was an Easter Egg hunt for the inpatient children. The hunt was organized by Girl Scout Troop 3989 and Mattie Miracle. This is the same Girl Scout troop who raised money to purchase and create 100 Build-A-Bears and then distributed them to children at the Hospital in February. Within a day of receiving my email request, Georgetown Cupcake wrote back to me and told me they would donate 24 Easter cupcakes to the event. I know this company is very philanthropic and I also let them know in my letter, that when Mattie celebrated his 7th and last birthday at the Hospital, their bakery donated cupcakes to his party. Their kindness remains with me today, which maybe why I consider them the best cupcake company in town. They not only taste the best to me, but the company's support of various local causes impresses me.

From the bakery, I headed to the Hospital. Parking is SUCH a nightmare at the Hospital, that I literally decided to park in the surrounding neighborhood and walk several blocks. I honestly do not know how I managed navigating that parking lot when Mattie was so sick and in a wheelchair. Because I just don't have the where with all on some days to fight this unnecessary battle now.

Girl Scout Troop 3989, had a half a day of school today. When they arrived at the Hospital, they all sat down and had pizza in the Child Life playroom, and they were having a good time talking and sharing stories with all of us. I noticed a big difference in their comfort level. They seemed much more at ease about visiting the pediatric units today than they did back in February during their first visit. I was impressed with their growth and maturity in just a short period of time, because these units are NOT easy places to visit, nor is it easy to see children so sick.


After lunch, the girls started hiding the 200 plastic eggs they lovingly stuffed over the weekend with candy. In this picture is Katie (in red), who is a Child Life Specialist at Georgetown Hospital who also worked with the Troop in February and Margaret (one of the girl scouts). The eggs were all sorts of colors and patterns and there were even a couple of golden eggs!

This foursome was in charge of hiding eggs in the Child Life playroom. Notice Erin (left) is holding up a golden egg! Erin was also one of the Girl Scouts who helped Peter and I at our registration table ALL day at the Symposium on March 20.

This foursome was in charge of hiding eggs in the parent lounge. They got creative and even taped eggs to the walls as well!

I title this picture.... "Eggs Everywhere!" Katie and I took handfuls of eggs and went out in the hallways of the pediatric units and put eggs on anything that we thought would capture the children's eyes. For safely and cleanliness reasons NO eggs were allowed on the floor.

Once we were ready, the children were invited out. This cutie in the picture with the girl scouts is Meredith. Meredith had such a good time that she landed up helping other children find eggs, and I also saw her trading eggs with a patient's sibling. She got his patterned egg, and he got her YELLOW egg, which he was proud of.

This cutie pictured here is Erica. Erica was a good little hunter. She filled up two bags full of eggs and was getting up on chairs to reach for eggs. She was on a mission! Mattie Miracle provided the kids with bunny ears, butterfly sunglasses, and cupcakes.

Byron was a great sport. He had one bag full of eggs in his hands and his mom was carrying a second bag that he filled up. Byron was so easy going and seemed so happy to just be a part of something today. He captured my heart and my attention.

At the end of the event, I took a picture of the eight girls from Troop 3989 who participated in the Egg Hunt. I find it challenging to take pictures of the hospitalized children during these events. Mainly because I imagine myself in these parent's shoes, and I frankly wouldn't have wanted to be in pictures back then. In addition, in the back of my mind, I also know that for some of them, there isn't much happiness there, and it is painful to smile and look like you are having a good time. However, the Girl Scouts did a phenomenal job, and I just wish this particular group would continue working with us and that we could evolve over time together. They were very good with the young children at the hospital, they were helpful, and truly motivated to make this a memorable day for the children. I appreciated and loved observing this, they give you hope for the future.

After I said goodbye to the girls, I walked back into the HEM/ONC unit and found my friend, Fatou. Fatou and Mattie were at the Hospital fighting cancer at the same time. I got to know her and her mom very well. In fact, some of my faithful blog readers may recall that I helped Fatou's mom out several times and called patient advocacy on her behalf because of how she was being treated on the unit. Fatou's mom has never forgotten my help. When I knew Fatou, she was only a baby. Now almost three years later, she has become a beautiful toddler. Fatou has been through a lot in her short life, and back in 2008 when I first met her, she was on life support for several days and none of us thought she was going to make it. But she did! She is a fighter. As I was snapping a picture of Fatou, a Child Life intern walked through the door, and with that, Fatou turned her head and greeted the intern with a big smile on her face. I remember those moments well. When trapped in a hospital, a child can get bored with his/her parent, and Child Life provides the necessary diversions to keep everyone in the family sane. It was a special Easter treat to see Fatou today!

While on the floor, I saw Mattie's nurses such as Miki, Debbi, and Ashley. I also saw Mattie's nurse tech, Bernadette, and several other familiar faces. Including Shirley who cleaned the units and who I interacted with daily. Debbi (Mattie's sedate nurse angel) came over to greet and hug me and told me it is now time that I take care of myself. Since she knows I am very good at meeting everyone else's needs, demands, and desires. But here is the irony of the matter, I had several people ask me today whether I work for Georgetown Hospital! That is funny! I suppose if you live there long enough, you look like you blend!

After leaving the floor, I then went to the pediatric Lombardi clinic! Why? Well Peter and I have a friend who desperately needs to see a neurologist. She can't get an appointment on her own until May, and in my perspective her symptoms merit help sooner rather than later. So naturally who do I text message when I have a medical issue? If you guessed Aziza Shad, you guessed correctly. Though Aziza is in Ethiopia, as always she answered my text within minutes. She told me to head to her clinic and have her nurse help me, which is exactly what I did. So in one clinic room, I was working on a neurology appointment for a friend and in the next room, I was dialoguing with Mattie's social worker, Denise, and the other two social workers in the clinic. Needless to say, I got to Georgetown at noon, and I didn't leave until 4pm! However, I learned today that in the past three years there has been such an inundation of headache complaints in the Washington, DC area (due to stress), that it is almost impossible to get a timely neurology appointment. Rather frightening!

My day did not stop there! I then drove to Alexandria, to sit with Ann's mom, Mary and feed her dinner. Before getting to Mary's room, her hall mate Catherine was waiting for me to arrive and wanted to speak with me for a while. Which I did. However, this brings me to tonight's quote. My friend Charlie sent it to me today and frankly it is very timely. By the end of everything today, I was livid. As I was leaving Mary's facility, I ran into a patient's daughter. The daughter turned to me and said I was "lucky" because I did not have to visit my mother in this facility everyday like her and Ann. She went on to tell me that caregiving is hard and I have no idea how demanding it is for her and Ann. Typically I would listen, absorb what someone was saying to me, and move along. But I was worn out by 6pm, and couldn't let that comment go. So I EDUCATED her. What we are talking about here is prejudice. Not necessarily racial prejudice, but prejudice in the sense that she judged me for how I looked, dressed, and acted. However, as I remind my readers often, you CAN'T judge a book by its cover. I felt the need tonight to let this woman know I am very well versed in caregiving. Not only from a research standpoint but from a very personal one. I told her Mattie had cancer and I lived in a hospital for over a year and cared for him intensely 24 by 7, and then he died. She had nothing further to say to me, and it is my hope that before she decides to be judgmental with another unsuspecting soul, she thinks twice about it in the future.

Tuesday, March 27, 2012

Tuesday, March 27, 2012 -- Mattie died 133 weeks ago today.

Tonight's picture was taken in April of 2005, at Mattie's third birthday party. Sitting on our couch was Mattie and a friend we had gotten to know while searching for preschools. In fact, this little boy's mom and I gravitated to each other at a preschool open house! As we described our boys to the preschool director, we realized our boys had many of the same sensory issues, and therefore we latched onto each other. Unfortunately, this little boy's family was transferred out of DC for work only months after we met. I was saddened to see this family leave town. Any case, at Mattie's party, we hired a magician (a student I met at the George Washington University) who came with his own pet bunny named Hobbs. Mattie and his friend enjoyed petting and getting to know Hobbs.


Quote of the day: Kind words do not cost much. They never blister the tongue or lips. They make other people good-natured. They also produce their own image on men's souls, and a beautiful image it is. ~ Blaise Pascal

I truly believe in the sentiments this quote expresses. In so many ways, kind words are actually magical. Hearing them, can brighten up even the worst of days, they can inspire us, re-energize us, and most of all give us hope. I went to visit one of my friends today. She lost her dad suddenly to a heart attack a few days ago, and I wanted her to know I was thinking of her. After visiting her, she then text messaged me minutes later to tell me she thought I was one of the most "kind hearted people" she knows. I was very touched by her words especially since she is the one dealing with a huge loss. Those words have stayed with me all day, and I guess I needed to hear them because there were points during the day when I found that people wanted an emotional piece of me, and typically I can handle it. But in this particular case it was three very needy older adults back to back who either needed care, wanted to chat, or wanted to be heard. By the end of the third interaction, I just felt wiped out and was ready to scream. Perhaps because I have a lot on my mind with my own medical concerns.

I went to see one of my doctors today, and handed him the 60 page medical report. I figured door to door delivery would be better than mailing it! The doctor needed time to digest it and this afternoon, his assistant called me and I will be driving back to Maryland on Thursday to consult with him. This medical issue is like constant white noise in my mind. I know it is forever present and I have to deal with making some difficult decisions, and yet through it, I continue to work on Foundation events. My next major Foundation event is on May 20th, and typically I am much further along with Walk plans by this time of year than I am now. The reasoning for my delay has to do with the hours and weeks I devoted to the Symposium. Yet I have promised $25,000 to Georgetown University Hospital's Child Life Department, and therefore, I have to get my fundraising hat (not one that comes naturally to me) back on!

Another highlight of my day was having lunch with my friend Margaret (Mattie's preschool teacher). Margaret and I had a lot to catch up on, and I appreciate that she is a good listening and understanding ear about my medical issues. I typically do not like taking the "woes is me" attitude, but as I was talking with Margaret about some of my decisions, I could see that indeed many aspects about the decisions I have to make are just not fair. Though I may intuitively know that, it is nice to hear someone express that and try to relate to how I may be feeling!

Below are some more pictures from the Symposium that I would like to share with you!!!

Pictured with me is Holly. Holly is the director of Child Life at Fairfax INOVA Hospital. It was a pleasure to meet her, because as I told her I am a big fan of Child Life Specialists and appreciate the work they do each and every day for sick children and their families. Frankly before Mattie developed cancer, I had no idea what a Child Life professional was! But I learned quickly and at Georgetown Linda became not only Mattie's Child Life specialist, but a crucial part of our family care team. So much so, that when I have a medical problem even today, Linda is the one of the first people I email!

While I delivered my opening greeting at the Symposium, which I posted to the blog on March 20, I had this PowerPoint slide of photographs of Mattie behind me. I find when talking about a child, whether a survivor or angel, the child's face must be present. To me, a face and name makes the disease REAL!

After Peter and I gave greetings, Jon Agin addressed the audience and told us about his daughter, Alexis. Alexis is a DIPG (a type of brain cancer) angel, and as you can see from her pictures she was a real cutie. Peter and I felt that hearing from fathers throughout the day was IMPORTANT. Rarely are fathers heard and given a voice, and therefore we tried to incorporate their perspective into the day.

This is a picture of me with Bonnie. Bonnie is the executive director of several health licensing boards in the District of Columbia. Counseling, the one that I chair, is just one of the many boards she oversees! Bonnie attended the entire Foundation Symposium, electronically promoted our event on the DC licensure listserv, and also helped me secure continuing education credits for counselors, psychologists, social workers, and nurses! I have known Bonnie for many years, she knew me as a student, pregnant, as a mom, as a professor, and now as a bereaved mom. Recently Bonnie introduced me to a wonderful restaurant on Capitol Hill. I liked it so much, that the night before our Symposium, we took all our researchers out to dinner there!

I would like to end tonight's posting with a message from our friend and Mattie's oncologist. Though I do not post these messages every Tuesday, Kristen faithfully writes to us each week! Kristen wrote, "I hope you have had time to recover from the very successful symposium. You continue to amaze me! I am hopeful you get some answers today with your doctor's visit. And always, I'm thinking of you...this Tuesday and everyday."

Monday, March 26, 2012

Monday, March 26, 2012

Tonight's picture was taken in April of 2005. That day we were celebrating Mattie's third birthday. As you can see, he was holding up three fingers to indicate how old he was. Birthday parties were challenging for Mattie. He did not like the noise, commotion, or lots of people around him. I would say the first three birthdays, Mattie typically landed up crying and needed time away from the party to regroup. However, this issue was short lived. Because by age 4, Mattie liked to socialize, he liked spending time with his close friends, and he appreciated most activities!


Quote of the day: Adopt the pace of nature. Her secret is patience. ~ Ralph Waldo Emerson

I began my day by going to the medical records department at Virginia Hospital Center (VHC). One of my doctors requested that I get a print out of two procedures in particular I had done at the hospital, because he feels that  my current situation maybe directly linked to my past medical history. Though VHC is a smaller hospital in comparison to where Mattie was treated, the turn around time to process medical records was slow. I requested these materials two weeks ago, and when I called on Friday, my request was still pending. Until I started screaming. It saddens me that the only way to get things accomplished is to scream, but fortunately for them I was busy with the Symposium, that I let me guard down for two weeks. Tomorrow, I will take this 50 page report with me to see my doctor in Maryland.

In the midst of paying Symposium bills, catching up on things all around me, and dealing with medical records, I did go to see Mary (Ann's mom) today. Mary was waiting for me, and as I walked in her room her eyes got bigger and I knew she was acknowledging me. For the most part, Mary is now mute, and caring for someone who is unable to talk is beyond challenging. Mary hears just fine and she most definitely understands what you are saying to her, it is just that her neurological disease leaves her trapped inside her body, unable to vocalize. I brought pictures that Ann had emailed me while she is on her vacation for Mary to see. I feel that the pictures help orient Mary to the fact that Ann is gone and also I believe the pictures allow Mary to know her family is thinking of her. After showing Mary the pictures, I taped them up on her wall, so she can view them the whole week. I also have the "Ann countdown chart" that I made up on the wall, so Mary understands when her daughter is coming back. Without a countdown, it truly is hard for Mary to distinguish the passing of time. This is not only a Mary problem, this can happen to any of us living in an institution. When your schedule is the same each and every day, and you do not leave your room and interact with others, it is absolutely disorienting. I remember this feeling quite well while caring for Mattie in the hospital. Some days I was so confused, I did not even know what season I was in, until I saw how people in the "free" world were dressed as they came into the hospital.

As promised, here are some more pictures taken at the Symposium!!!

This is a close up of one of the five outstanding legislative leadership awards we gave to congressional members. This one happens to belong to Rep. Mike McCaul (R-TX).

Before the Symposium took place, my friend and colleague, Denise came up to talk with me. Sheryl, our photographer, caught this special moment. Denise and I went to graduate school together, and Denise's daughter is Marisa. Marisa is in college now, but in the summer of 2009, she helped me with Mattie when he was home periodically between hospital visits. In addition, Marisa runs our Walk bake sale each year. This year will be her THIRD year coordinating and baking for the bake sale! Denise came up to me at the Symposium to give me a hug. With the hug came the message that it was from Marisa, who was thinking about me and wishing us luck from NY! Several months before the Symposium, I talked with Denise about how to get the word out to the professional community about our event. Many of her ideas were very fruitful, and I found once I got connected with one professional group, the rest started to get on board!

In this picture from left to right are: Ann Henshaw (Mattie Miracle Board Member), Vicki, Jimmie Holland, MD (Founder of Psycho-oncology), and Peter. Jimmie lives in New York and is affiliated with Sloan-Kettering. Lori, one of the wonderful psycho-oncologists on our panel gave me Jimmie's email address and to my surprise, when I told Jimmie about the event, she not only supported it but was gracious enough to attend it and say a few words. Jimmie, in fact, emailed me today, and looks forward to working with Peter and I in 2013. Her organization is hosting its 10th annual conference in California in February of 2013, and we are brainstorming ways for Mattie Miracle to support this endeavor and give pediatric psycho-oncology a presence at the conference (a conference that typically focuses on adult psycho-oncology research and needs).

This powerful group, was our parent speaker panel! Their stories, insights, and feelings made the afternoon very meaningful and memorable for all attendees. This group reminded us why we needed to have this Symposium and why it is vital to discuss the psychosocial needs of children and their families battling childhood cancer. From left to right are: Neely and Jon Agin (Parents to Alexis, a DIPG angel); Peter, Marilyn Eichner (Mom to Danielle, a Leukemia survivor), Gavin Lindberg (Dad to Evan, a Neuroblastoma angel), Patty Lubin (Mom to Greg, an Osteosarcoma survivor), Diane Mauk (Mom to Holden, a Brain Cancer survivor), Toni Johnson (Mom to Brandon, a Lymphoma survivor), Ann Henshaw (Mattie Miracle Board Member), Vicki, and Terri Tomoff (Mom to Ryan, a Leukemia Survivor).

Sunday, March 25, 2012

Sunday, March 25, 2012

Tonight's picture was taken in March of 2003. This was Mattie's first plane trip to Los Angeles, and his first experience dealing with a time zone change. While the rest of us were exhausted, Mattie awoke at 4am for several days in a row. His body was telling him it was morning, despite our best efforts to get him back to sleep. So though you may not be able to tell from this picture, it was taken at 4am, Peter and I were half out of it, but Mattie was alert, fully on, and ready to start playing and engaging with the world. I remember how exhausted we were during those days and I had no idea the level of exhaustion could get much, much worse. In fact, living with Mattie's cancer in a hospital 24 by 7, had to be one of life's greatest tortures. It wasn't only a question of physical endurance, but there were the mental, social, and emotional endurances that were off the chart!


Quote of the day: Recovering the sacred is remembering something we've forgotten, something we may have hidden from ourselves. It is about uncovering and discovering the innate wholeness in ourselves and in the world. ~ Dr. Naomi Rachel Remen

Today I tackled a closet in Mattie's bedroom that I haven't touched in YEARS! Though I dread closet cleaning, I decided with the weather being crummy this was the perfect day to get this over with. To my surprise in Mattie's closet was about 12 photo albums I had stored. In a way, going through these albums were like "recovering the sacred" as tonight's quote so aptly discusses. I had forgotten about the albums being stored there and even about aspects of my life captured in these photographs. Though I still take a lot of pictures, everything is digital now. So I no longer develop photos and have to organize them in albums. A real thing of the past! On one hand it makes picture taking a lot easier and certainly there are no piles of photos to organize or to collect dust. But there is something actually quite tangible and meaningful about holding and seeing a real picture. Peter and I went through about half of the albums and observed and relived our college years, our graduation, his time in business school and his graduation, our wedding, moving into our apartment, our honeymoon trip, and even my baby shower. It was like a trip down memory lane, memories that were trapped inside, and I forgot about. Since Mattie's cancer, nothing really permeates my feelings, and it seems like I have lived two lives..... the life before cancer and the life after cancer, and the two have yet to unite. I am not sure they ever will.

Basically, I had no idea that cleaning out a closet could actually be taking us on a trip of self-discovery or better yet be faced with photos that uncovered a timeline of our history together as a couple. Needless to say, this clean-out project occupied most of our day.

On an unrelated note, so many of you are contributing to Mattie's 10th birthday remembrance drive. We are so grateful and appreciative. Today we opened up a surprise box that came in the mail yesterday. I wasn't expecting this box at all, but when I opened it, I found Sponge Bob bandaids (one of Mattie's favorite characters, mainly because he knew I disliked Sponge Bob) and all sorts of keurig kcups to bring to the hospital. In a way, it felt like my friend had sent me a birthday gift in honor of Mattie, and it made me feel very special and remembered. It is very challenging to be a mom who lost a child to cancer. At times I absolutely resent my friends and am quite jealous of them for what they have. I also know on some level they can't and will never understand the depths of my loss. Which is a good thing for them. When my friends celebrate their child's 10th birthday, they land up sending out invitations, planning parties, getting a cake, and watching their child open up gifts and interact with friends. I do not have any of these simply pleasures or tasks anymore. Instead, in order to celebrate Mattie's birthday, we have to create specific venues, like this birthday remembrance drive. Yes we keep his memory alive, but it isn't the same as having him with us.

As promised, I will continue to share photos with you from the Symposium over the next couple of days...............................


In this picture are Peter and I with four out of the five psycho-oncology professionals who conducted a briefing and hosted several research sessions at the Symposium. From left to right are: Bob Noll (from Children's Hospital in Pittsburgh and the chair of the behavioral sciences committee of the Children's Oncology Group), Anne Kazak (from Children's Hospital of Philadelphia and the Scientific Chair of our Symposium), Andrea Farkas Patenaude (from Dana-Farber Cancer Institute), and Lori Wiener (from the National Institutes of Health).

I entitle this photo, "the Moms!" From left to right are Toni Johnson (Brandon's mom), Terri Tomoff (Ryan's mom), Vicki, and Annie Gould (Eloise's mom). Two of us have children who survived and Annie and I both lost a child to cancer! Toni and Terri are friends I met through Georgetown University Hospital. As my faithful readers know, Toni and I battled our sons' cancers together! Whereas, I met Annie (who lives in a different region of Virginia) after Mattie died, while lobbying on the Hill with CureSearch. Annie and I have remained connected ever since and I am honored that she journeyed to DC to attend the Symposium.

As people were registering and the event was unfolding, Sheryl (our photographer) captured my discussion and facial expression I had while talking to Samantha. Samantha works for Mercury, LLC, the lobbying firm that took Mattie Miracle on as a pro-bono client. Though I planned the Symposium and truly spearheaded the entire event, I did go to Samantha for help and guidance on various issues. So when she came for the morning, we were both happy to see the event taking place and with great attendance.

Peter was chatting with Tim. Tim has become an amazing Mattie Miracle supporter. He attends all of our events and he is not only a Georgetown University Hospital administrator, but he has become our friend. Tim plans many events for the Hospital, and he understands the thought, effort, and energy that such planning involves. When Tim sent me an email about the success of the Symposium on Tuesday night, I felt that his thoughts and feelings were a real gift sent to me by someone who truly gets the complexities of hosting such an historic day!

Sheryl snapped a picture of Peter and I before the congressional briefing started. At that point there was a lot of energy in the air, and Peter and I knew we were not only the hosts of this event, but we also had to keep it flowing, interacting with people, and explaining to others the mission and goals of Mattie Miracle.