Saturday, September 20, 2014

Saturday, September 20, 2014

Tonight's picture was taken in September of 2008. Since I have been highlighting Mattie's love of cardboard boxes, I figured showing how these boxes migrated to his small PICU room would also be helpful! Mattie's hospital rooms were small and confining, especially with three of us, two beds, chairs, and equipment in the room! Then add in toys and cardboard boxes, and the room was beyond tight. It was a full time job each day to keep it organized and under control! But there was no way Peter or I would get rid of those boxes. Mattie thrived on creating with them, playing in them, and building with them. So they were vital to our existence!


Quote of the day: The sun was like a great visiting presence that stimulated and took its due from all animal energy. When it flung wide its cloak and stepped down over the edge of the fields at evening, it left behind it a spent and exhausted world. ~ Willa Cather

When I saw this quote this evening, it resonated with me. I just felt exhausted all day and couldn't do much. Peter and I are all packed up for Curefest tomorrow. The event will be held on the National Mall, which is close to where we live. We aren't driving to it, but walking to where our exhibit booth will be. It will be a 1.5 mile walk each way and we packed up our cart with Foundation items. We have to set up at 8am, so we have a very early walking start to get to the event and a FULL Sunday ahead of us! 

I did talk to my doctor last night about this kidney stone incident that I had on Thursday night into Friday. I suspect this is why I feel so wiped out. She and I are usually on the same wavelength regarding my care and she is following up with me next week with scanning!

Later today, Peter and I were outside on our deck. I was trimming our plants and Peter was up top collecting tomatoes! If you notice, Peter collected a Tupperware full of cherry tomatoes. These are Peter's babies! They have been great producers ALL summer! I joked with Peter this evening because if Mattie were with us, I know darn well that he would have been right along side Peter picking those tomatoes. Mattie would have been enthralled to be on the ladder and up at that height for starters! But Mattie also loved being outside and in the garden. He was a regular "Farmer Brown," as I called him and his dad!

Friday, September 19, 2014

Friday, September 19, 2014


Tonight's picture was taken on September 4 of 2008. I think this photo says a lot about Mattie and his battle. Mattie used cardboard boxes in very creative ways and in this case he decided to build a box as his safe haven. He did not want to be in clinic and did not want to be seen. I think he was rather successful! As Mattie began his treatment it impacted his skin and as you can see he started wearing band-aids on his knees. This was only the start of many changes that were about to begin in our lives.   





Quote of the day: At first people refuse to believe that a strange new thing can be done, then they begin to hope it can be done - then it is done and all the world wonders why it was not done centuries ago. ~ Frances Hodgson Burnett

I wasn't feeling well last night. I had a pain that was quite intense. I assumed it was one of my bladder bouts coming on, but I also knew it felt different than anything I ever experienced before! This morning, I recognized why, I had a kidney stone. How I landed up passing that and then attending a Caucus on Capitol Hill is beyond me. But I did! Needless to say, I wasn't in the best of places for that event and therefore had trouble focusing and concentrating. 

The Childhood Cancer Caucus hosted its 5th Annual Childhood Cancer Summit: "Pediatric Cancer: Major Advances, Major Challenges."  Congressmen Michael McCaul and Chris Van Hollen, the co-chairs of the Caucus, welcomed this year's keynote speaker, Dr. Francis Collins, the Director of the National Institutes of Health (NIH), in addition to Dr. Ronald DePinho, the President of MD Anderson Cancer Center, and Dr. Amrit Ray, Chief Medical Officer at Johnson & Johnson - Janssen Pharmaceuticals.  

I will share a few slides that Dr. Collins presented to us. Dr. Collins' whole presentation was quite interesting and focused on the latest trend of targeted and individualized therapies for cancer patients. Especially with understanding the patient at the molecular level and then designing treatment to tailor to these needs. Sounds good in theory and perhaps one day this kind of treatment will be available to all children! But for now, this is not what children are lucky enough to receive. FOR A WHOLE HOST OF REASONS. In any case, this slide discusses how understanding the biology of a patient can help doctors tailor treatment. Treatment that may put a child at risk for developing heart issues simply because the child has a genetic factor that could trigger such a condition if exposed to a particular drug. 

I am not sure why this slide
disturbed me so. After all it looks so cartoon like!!! But the fact or the reality is that Mattie got cancer because he had a mutation in his DNA. He got his DNA from Peter and I. Naturally that doesn't mean he inherited an abnormality, it could have happened when the cells divided and so forth, but it is still just an upsetting visual to accept. To a scientist it is simply facts to deliver to an audience, to a parent to receive this means so much more. 

Dr. Collins continued to explain how cancer arises at the cellular level with this illustration. 

Dr. Collins discussed with his audience today sites around the Country conducting genomic studies on specific types of childhood cancer. So in essence hospitals are working with patients on the molecular level to identify molecular targets in order to improve diagnosis and treatment. The goal being to make the treatment more effective and less toxic! It maybe hard for you to see this map, but what caught my attention was Texas Children's Hospital, Children's Hospital of Los Angeles, and the National Cancer Institute, all of which are studying Osteosarcoma. 

Dr. DePinho's slide which speaks for itself!

Dr. Ray is the chief medical officer of Johnson and Johnson. His presentation was very sensitive and compelling today. Pharmaceutical companies have few incentives to create cancer drugs for children. Mainly because in comparison to the number of adults who get cancer, 1.6 million per year, the number of children per year is much smaller (~15,000). Which of course is still HUGE, especially if your child is one of these 15,000. Dr. Ray came to show his support for the term 'compassionate use' and how he is holding expecting his company to make choices that are in the patient's best interest (which I hope is correct, it sounded good - he had his children sitting in the audience, so how could you attack him on this issue!!!). Medical professionals use the term “compassionate use” to refer to the treatment of a seriously ill patient using a new, unapproved drug when no other treatments are available. Drugs that are being tested but have not yet been approved by the US Food and Drug Administration (FDA) are called investigational drugs. These drugs are generally available only to people who are taking part in a clinical trial (a research study that is testing the drug). Being able to use one of these drugs when you are not a clinical trial has many names, but is most commonly referred to as compassionate use.

Dr. Ray's slides had a very humanistic side to them and this I feel was by design! It threw you completely off guard because this is NOT what you would be expecting from a drug company presentation!


I attended this year's Caucus with my friend in cancer, Ilona. I try to always go with one of my friends. In the past I went with my cancer buddy, Annie. I find it is important to always go with a friend for many reasons. It helps to talk about the content, the experience, and the impact of the event. Ilona and I are on different time frames of the grief continuum and we have also had different experiences advocating so far, and therefore, I always try to be cognizant of influencing her of my own feelings and opinions. Whereas Annie and I have kind of muddled through these things together which makes me feel less guilty when I state an opinion or pronouncement. 

Thursday, September 18, 2014

Thursday, September 18, 2014


Tonight's picture was taken in September of 2008. As you can see Mattie was stacking his markers, not unlike blocks! Mattie was a builder by heart! Stacking, building, and creating gave Mattie pleasure and as you can see.... it put a smile on his face! Whatever brought a smile to his face was an approved activity in our book! So much so that such items would fill our two by four of a room up! Every inch of our room would be filled at times! With large cardboard boxes too, since Mattie loved constructing and designing with boxes. 




Quote of the day: Empty pockets never held anyone back. Only empty heads and empty hearts can do that. ~ Norman Vincent Peale


Last night I watched a show on TV called the Red Band Society. This show 
is a dark dramedy focused on a group of teenagers living together as patients in a hospital's pediatric ward. I imagine this show was well timed to be aired in the month of September, which is National Childhood Cancer Awareness Month. In any case, this show has been getting promoted big time all over the place and if I heard it one more time on the radio, I thought I was going to scream. So I decided given the hype, maybe I should watch it because just perhaps Hollywood was going to surprise me and capture the true essence of what Mattie and our life looked like living in a PICU and battling childhood cancer! Maybe, just maybe, Hollywood was going to give us the pediatric version of the hit show ER! If that was the case, I certainly did not want to miss out! 

Within the first few seconds of the shows opening scenes, Peter and I knew right away that this pilot was not targeted to us. Quite honestly I am not sure who this show is targeted to, other than the lowest of the low. I would say teenagers, but frankly that is insulting and generalizing to all teens. The dialogue is lude, crude, unimaginative, and totally unbelievable to anyone who has lived within a children's unit. Children do not have free reign within a hospital. They do not migrate from unit to another, interacting with adult patients, eating and conversing in adult patient rooms, and worse off, children are not making medical decisions for themselves without having parents around. In this series there ARE NO parents present. Typical Hollywood! Parents are NOT necessary, they are the evil ones, the uncool ones, the ones kids want to escape from, even when gravely ill! Newsflash..... KIDS WANT THEIR PARENTS AROUND FOR THE MOST PART WHEN THEY ARE SICK AND IN A HOSPITAL! In this show everyone was hateful and it left me absolutely perplexed that a young teen with an eating disorder was living long term in a pediatric unit with children with cancer! WHY???? So much about that show made NO sense! 

Of course there is NO mention to the actual red band (the title of the show itself)! In the show you see all the kids wearing red bands, as their hospital ID tags, but for those of us who have ever had a sick child know all too well... red bands indicate only allergies to medications. They are NOT hospital IDs!!!! So to Peter and I the whole name of the show is a misnomer. But moving passed that faux pas, it is the whole callous manner in which serious medical issues are addressed in this pilot. After watching this show for 15 minutes, we had to turn it off. I was incensed because anyone who has experienced such a crisis or worse lost a child in a pediatric unit knows that the picture they are portraying is a farce. The show glamorizes pediatric illness to the public which is disheartening, and it belittles my experience, it mocks the fine work that pediatric units actually accomplish each and every day around our Country, and worse it completely hides the value that parents and families serve every day within these hospital settings. 

I went on line this evening to look for reviews of this nightmare of a show and found one by the Hollywood Reporter! The Hollywood Reporter gets an A in my book!    

Hollywood Reporter Review:

http://www.hollywoodreporter.com/review/fox-red-band-society-octavia-spencer-733574

Wednesday, September 17, 2014

Wednesday, September 17, 2014

Tonight's picture was taken on September 21 of 2008. There was a lot going on in this photo! Mattie was sitting on the bed where Peter or I periodically slept, while he was receiving a dosage of his anti-nausea medication. Meanwhile, I was thoroughly exhausted and had to close my eyes. I wasn't truly sleeping, just trying to rest. I do not think I ever completely slept while in the hospital NO MATTER what time of day or night it was. I lived on the edge in there ready to deal with the next crisis or to manage who was going to walk in the door. Walking in the door wasn't limited to the waking hours in a PICU. It happened at ALL hours and residents seem to love those awkward hours especially! But check out Mattie's facial expression here! He had a regular impish look to him! This was before any of his surgeries. The surgeries changed Mattie dramatically! They changed how he felt about himself, his ability to walk, do things for himself, and to function like a six year old boy. Needless to say after his surgeries he wasn't only battling cancer, he was battling profound mental health issues that were hard to face for an adult much less for a child. 


Quote of the day: Let the beauty we love become the good we do. ~ Rumi


This morning I walked to our neighborhood post office to mail a letter. While walking I ran into one of my neighbors. I know this woman's daughter for many years. We paused to talk. This lady is an older adult and several years ago lost her husband to cancer. She then decided to relocate to DC to live with her daughter, which is how I got to know her. In any case, she began to ask me how I spent my summer. Well that was a loaded question. Since she knew about my story and loss, I was honest and told her I spent the summer writing a book chapter. Of course I could have written a chapter on anything. The wonders of chocolate, the peacefulness of bird watching, or how to cultivate a garden in ten easy steps..... but no of course not! So I told her the premise of my chapter. She paused and acknowledged that this was NO EASY chapter to write for many reasons. One smart lady! She then went on to make a comparison between losing her husband to cancer to losing a child to cancer. The differences in the ages and a life lived to one not even explored was well stated. In any case, we had a lovely conversation, as she then wished me luck on my second chapter. It was a nice way to start off the day. After all this is not a person who I interact with often and yet she got it right away. She understood what I summer I must have had and now what a Fall I am enduring. 

Later in the day, I spent time digging through Foundation supplies. This Sunday, Mattie Miracle will be attending Curefest (www.curefestdc.org) from 9am to 1:30pm. Close to 1000 people are registered for this Walk to highlight Childhood Cancer Awareness and 75 exhibitors will be featured. Of which we are one!!! We are giving away free t-shirts, stickers, kid trinkets, and promotional materials. Our main purpose is to promote our Foundation and to let others know our platform to develop a National Psychosocial Standard of Care. I can safely say after several hours of working, Mattie's room no longer looks like a warehouse and we are all set to go on Sunday! 

Tuesday, September 16, 2014

Tuesday, September 16, 2014 -- Mattie died 262 weeks ago today. 

Tonight's picture was taken in August of 2008. Mattie, Peter, and I were in the Hospital's oncology clinic and we were painting a ceiling tile. His wonderful art therapists sketched a whole Scooby Doo scene for Mattie on this tile for him to paint and decorate. Once that was done, the tile was mounted onto the ceiling for everyone to see. Ironically this tile is still in the clinic today! The tile has outlasted the patient. In fact, there are many tiles that Mattie painted that are still within the clinic. The only one missing is his HUGE cockroach tile that he painted. No one seems to know where that one landed up. My hunch is it probably freaked a child out and it was taken down permanently. Not everyone shares Mattie's love for bugs, MYSELF included! But this Scooby Doo art therapy project was beneficial for all three of us. It kept us focused, working together, it helped the hours go by when we were in the clinic, and when we were finally done, it was a finished product we were proud of creating as a family unit. When I see it today, I still remember our times together painting!

Quote of the day: By bringing a soulful consciousness to gardening sacred space can be created outdoors. ~ S. Kelley Harrell


To my faithful readers who have been following along with the blog, you all know I wrote a book chapter this summer. A chapter which took me three solid months to write. This was absolutely wonderful for the Foundation, but in so many ways, it was like living in a time warp. One minute it was spring and the next minute it was the Fall. The only problem with all of this is I committed to writing yet another book chapter. For a different book altogether, with different editors. This chapter is due on October 15. That is a very tight deadline. The main problem with taking a break in between, is that it is very hard to vamp up again, get refocused, and regain my discipline. I frankly just don't want to stare at a computer, delve into the literature, read anything, or focus my time on Mattie's cancer battle in too much detail. 

The other chapter I wrote in the summer was unique because it was a psychosocial chapter going into a book geared toward medical doctors. Therefore in my perspective it was vital to make a compelling case for the importance of psychological care! This current chapter is going into a psychosocial book, geared toward mental health practitioners. However, our chapter is the parents' perspective. I have news for you, there are NOT MANY chapters out there from a parent's perspective! Especially with a parent's lens as to what is important to help a mental health practitioner moving forward when working with other childhood cancer patients and families. No pressure there! As I let that sink in, I find myself getting stymied. This has happen to me and I can't write anything. I spent a good portion of the day doing literature searches for this chapter and of course finding NOTHING! Not unlike my last chapter. So it is the art of creativity, of using what currently exists to make a case for what I am trying to say! LOVELY, why should anything be easy. 

The highlight of my day was going to zumba class. I haven't been to class for months. My teacher goes on a summer break with her family and when she came back, I was in LA. After class, I had tea with my friend and fellow classmate, Heidi. We had sunshine and conversation together, and it was special to have time with each other that was unplanned.

Later in the day, I was downstairs in my complex doing laundry and bumped into one of my neighbors. I recognized her but do not know her per se. However she apparently knows me by my garden. Apparently she can see my garden from her upstairs window. She stopped me to let me know how much happiness my garden has brought to her all summer and what a labor of love she knows it is. Her comments made me smile because to some extent I felt like she understood that my space is special to me, we try to care for it, and perhaps this is why in the middle of the city we get visited by hummingbirds and all sorts of birds and butterflies. All symbols to me that Mattie is around me and present in my world. 

Monday, September 15, 2014

Monday, September 15, 2014

Tonight's picture was taken in September of 2008. This was clearly not one of Mattie's happy moments. We had many times like this actually, maybe not captured and shown on the blog on a regular basis, but those who cared for us in the Hospital saw these times often. They lived them with us. These were sad, anxious, and very depressing times. Times when you really weren't sure how Mattie or us were going to pull out of it. There were no quick fixes, happy pills, or changes of scenery. It wasn't as if we could alter Mattie's circumstances, and living with such tension, and this profound lack of control for so long I believe did some how alter our whole outlook on life.


Quote of the day: The soul is healed by being with children. ~ Fyodor Dostoyevsky


Today I went back on Mattie's school campus with my friend Linda. Linda is an avid blog reader and has followed the whole saga of Mattie's tree dying twice and wanted to see Mattie's new tree and the new location. So we walked onto campus today so I could show her the tree and the work we did this weekend to build out the base of the tree. When Linda asks to see a part of my Mattie world, I am always honored. She always self-initiates this! It is not unlike when someone wants to see your child's recital or school play, photos, and other accomplishments. I may not have those benchmarks anymore but instead, I have more non-traditional things. Such as the tree for example.

When Linda and I arrived on campus, I could see children running around on the AstroTurf where Mattie used to play but I did not think much of it since Pre-K to second graders could be using that space of the school. Linda and I instead approached Mattie's tree and as we did that several children decided to come over and chat with us. As is typical with children..... they were inquisitive and wanted to know about the tree! Who was it for and why was it decorated!??? One little girl loved the Legos and cars hanging on it and was intrigued by the acorn shaped birdhouse on the tree. However, what I noticed was that Donna and Leslie were outside with their classes of students. Donna is the kindergarten teacher who I work with in the spring, in which I come into her classroom and conduct a three part Matisse and Picasso art series and Leslie was Mattie's kindergarten teacher. We had a wonderful time chatting altogether!

Several of Donna's children wanted to get to know Linda and I! They wanted to show us that they could do head stands and though we came to look at the tree, we got much more than just a tree visit. The beauty of children is they have a way of engaging you immediately and taking you right into their world. The kindergarten age group is a priceless age and an age I relate to quite well. So many of them today reminded me of Mattie. One girl was struggling with a head stand, while the other one could easily do it. So literally I put my purse down and I grabbed the legs of the one girl who was struggling and lifted her right up and helped her balance. Something I would have done with Mattie without skipping a beat. I just knew the signs of a child wanting to try something, of wanting to fit in physically but not knowing how on earth to do it without help! As I always say..... Mattie was my BEST TEACHER!  Seeing these children today reminded me of Mattie and it can be bittersweet, but they also bring me happiness. Because they remind me of a time in my life with Mattie when he was healthy and vibrant. Also in a way, children have a way of being very appreciative and happy to spend time with you, which in a way is different from the average adult. 

I wanted to share a photo of my new Orange Butterfly addition to my garden. Linda brought this cutie back for me from her beach trip! I stuck this fellow in my flower box, right next to the American flag! I wish this greenery would last for a while, but I know soon it will die off because of the cold and the remaining color will be the orange butterfly to carry me through the winter!

Sunday, September 14, 2014

Sunday, September 14, 2014

Tonight's picture was taken in September of 2008. In fact this photo was snapped in FAO Schwartz in NYC. We drove Mattie up to New York City to be evaluated by doctors at Memorial Sloan Kettering. Ideally because we wanted to enroll Mattie in an experimental trial so that he would have access to an immunotherapy drug to treat his osteosarcoma (this was in addition to the therapy he was receiving at Georgetown). However the only way he could get access to this drug was to go to NY! To make this journey, the process had to be fun for Mattie, which involved visiting toy stores, going on boat rides, and taking an elevator ride up to the top floor of the Empire States Building! All very memorable for us! 

Quote of the day: But the memories that hang heaviest are the easiest to recall. They hold in their creases the ability to change one's life, organically, forever. Even when you shake them out, they've left permanent wrinkles in the fabric of your soul. ~ Julie Gregory

Peter and I spent a good part of our day outside! I would have to say that Fall is definitely here. I honestly do not know how we went from Summer to Fall so quickly, but it is happening and I am NOT happy about it at all!. 

In June when we went to the Outer Banks, we came home with a Butterfly Ginger Lily plant from the Elizabethan Gardens. We have been nurturing this plant all summer. It produces the most delicate and fragrant flowers. The flowers smell NOTHING like a lily but like a gardenia instead!!! However these flowers are one hit wonders. Once they bloom they don't last more than a day or so. They are that fragile. But each bud seems to produce MULTIPLE flowers. It is totally incredible. In any case, I have been perplexed by the name "butterfly" in the name of this plant until today. Peter snapped this photo and when I saw it, immediately I saw that the blossom looks just like a butterfly! So now I totally get why the plant is called a butterfly ginger lily!

The highlight to Peter's day was receiving a gift in the mail. The funny part however is he doesn't know who the gift is from. There was NO note and no return label or any information. It is always very special to be thought about and maybe something even more special not knowing who the gift is from. But clearly it is someone who knows Peter likes coffee, that we gravitate to red things (because that was Mattie's favorite color), and that Peter and Mattie LOVE flashlights. So this has to be a person who knows us. Needless to say, whether an adult or a child, I would say, there is something magical about receiving a gift, and I would say someone made Peter's day. He truly felt special today. 

We went back to Mattie's tree today at his school. This is a photo of the tree from yesterday. I am showing you this as a comparison to the photo below. 

This is what we did to the tree today. We literally dug all around the base of the tree. We added four bags of top soil around the roots of the tree. Then we planted close to 100 bulbs (daffodils and crocus) around the tree, and then added four bags of mulch on top of everything. Hopefully this will truly protect the base of the tree. We have planted bulbs around Mattie's previous trees. This is a tradition of Peter's, and it is lovely to visit the tree around Mattie's birthday and to see flowers springing up around the tree! 

A new addition to our balcony today is this glorious butterfly! I will be leaving him outside during the Fall and Winter months and hopefully he will add some color to the grayness that is in store for us. Many of our plants on our balcony stay green throughout the winter which helps!