Tuesday, March 31, 2015

Tuesday, March 31, 2015 -- Mattie died 290 weeks ago today.

Tonight's picture was taken in March of 2007. That March we took Mattie down to Key West, FL to spend spring break with Peter's parents. Mattie was basking in the sunshine. Notice even in this photo he was wearing the color orange. Mattie gravitated to bright and vibrant colors, which is why the Foundation's colors are orange, red, and yellow.  


Quote of the day: You never have to change anything you got up in the middle of the night to write. ~ Saul Bellow

There are points along our trajectory where I sometimes pause and go back in time to former postings on the blog and reflect. I copied some of the reflections I posted back from March 30th and 31st (2009) below. To this day I frankly do not know how I was able to write so coherently on little to no sleep and while living under the most toxic of circumstances. I can still picture in my head Mattie's rooms, the chaos, and what our nights were like. Some things are just impossible to forget. I am very cognizant of the fact that I have a great deal of issues with the majority of physicians. One could ask...... where does this come from? Is it simply because doctors could not save Mattie's life? My answer to that would be NO! The answer is much more complex than that. I think cancer is much bigger than medicine itself, and any doctor who truly think he/she has control over cancer is kidding himself. My issue with doctors are usually related to their lack of psychosocial compassion and concern for patients. Or basically not even valuing this component of care as impacting the medicine. As I reflected upon the blog postings from 2009, even my example from those dates speak for themselves! Clearly not all physicians are like this, but when you find one that does value your psychosocial concerns and you as a person, YOU TAKE NOTICE. Mainly because this professional stands out as NOT part of the norm. 

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March 30, 2009

There is a Vistaril shortage at Georgetown. Vistaril is a type of antihistamine, but it is very effective as an anti-emetic for Mattie. For weeks, I have told Mattie's doctors about my concerns about the dwindling Vistaril supply at the Hospital. They assured me they would look into it and if they couldn't find more they would come up with an alternative. I want our readers to understand, as the nurses have educated me, that you want to prevent Mattie from experiencing nausea. Because once nausea starts, it is hard to hold it back and possibly prevent vomiting. So to me, Vistaril is vital to ensure a certain level of comfort for Mattie through chemo. Thanks to Mattie's blog, I have had the opportunity to meet a lovely family from Pennsylvania. This family's daughter uses Vistaril and they let me know their hospital has an adequate supply. I even alerted our doctors to this information. So why Georgetown feels there is a national shortage is beyond me. We have even found a supply at Duke. But again, even today, Georgetown's pharmacy claims there is a national shortage. I have been addressing this issue for weeks with Mattie's doctors, because I wanted to prevent exactly what we are dealing with NOW. As of today, there was NO vistaril available for Mattie. I blew the roof. After which, they did locate the last vial in the hospital, but it isn't enough IV vistaril to carry Mattie threw the week. Because we have to conserve this last vial, the doctors expect me to wake Mattie up periodically through the night to give him oral vistaril. I am not sure why they don't see the problem with this? I am sure any parent reading this blog gets it immediately! Mattie needs rest. But no, instead I have to disturb his sleep to wake him up to take oral medication. Mattie is not very complaint with oral medication, and I can assure you I dread his 2am dosage! Mind you all of this could have been avoided if the doctors and pharmacy were proactive and obtained the IV vistaril weeks ago, when we brought this to their attention. I also want to mention that I did not only mention this issue once to the doctors, I addressed it numerous times. So often, that all the nurses on the floor knew about our issue. So tonight, I feel this is just another example in a sea of examples, that illustrates my disillusion with the medical community. Their decisions have real world consequences on their patients and families. I personally would love to get Mattie's doctors in our room at 2am to administer this oral medication. I would bet if they had a couple of sobering reality checks, it may make them think twice about placating parents and assuring us they are on top of our requests, when it clearly is not a priority for them. My favorite line of reasoning today is that Mattie is getting a lower dosage of Ifosfamide this week, so he most likely won't get nauseous. This line of reasoning is based on what? We do not know how Mattie will react, and I rather be prepared with the medication than not have it at all.

March 31, 2009

As I assumed, Mattie was in no mood to take the oral vistaril at 2am today. I woke him up to use the bathroom at that time but he refused to take the medication. I did stay up until 2am, because I felt compelled to see how Mattie was doing and to potentially try to give him his oral medication. Mattie was consistently up every two hours, and by the time Peter woke me up at 6:30am, I did not know what hit me. I sometimes wonder why hospital employees can't understand why I am so tired. I almost wish in a way I could videotape my life, because in so many ways it is hard to fathom what we deal with in one day. We deal with Mattie's non-stop care and treatment, but being six, we are also dealing with his constant need to play and inordinate amount of energy!

This morning, Mattie was exhausted and he stayed asleep until around 11am. When he woke up he looked like he was dazed and wiped out. He did eat his oatmeal, and then one of Linda's interns, Laura, came in to play a "worm" game with Mattie. Mattie greeted Tricia, one of his favorite HEM/ONC nurses, and had his vitals checked. Then he was off to the playroom. Once he left his room today, he never looked back. He had an extremely busy day.

While Mattie was sleeping this morning, I spoke to Tricia about the Vistaril shortage. She told me the residents would come and talk with me and they would have someone from pharmacy visit me. Well the seconds of waiting turned into minutes, and then an hour. I am certainly patient on many fronts, after all during check in days alone, I wait almost 10 hours for Mattie to begin chemotherapy. But with issues such as following up on medications and hospital personnel networking, I have very little patience. So I called Gail Chisholm, my patient advocate. She gave me the name and phone number of the head of pharmacy at the Hospital. To my surprise when I called Dr. Jeff Cox, he picked up the phone and took the time to talk with me. He heard my concern and was upset with the run around I was getting. He promised to investigate the situation with Vistaril, and would get back to me in two hours. Guess what? Not only did he call me back in two hours, but he went above and beyond the call of duty. He started calling around other local hospitals, and connected with the head of pharmacy at another hospital. He arranged for this other hospital to give Mattie five vials of IV Vistaril. But he wasn't taking a chance on the medication's delivery, and literally drove to the other hospital himself, picked up and secured the medication for Mattie. Here is another example of another outstanding department head at Georgetown Hospital. Dr. Cox is my hero for the day. He listened, understood, and his actions matched his words! Now if I could pick up the phone and get this Vistaril issue addressed in less than a day, it makes you wonder why Mattie's doctors could not? Should I as the parent have to take on this stress of securing medication? I think the answer should be no. I think what builds trust for me in Mattie's doctors is a level of commitment and advocacy for Mattie, and when I don't see it, I start questioning everything. If they can't advocate for medication, what else on earth aren't they advocating for? I wish I wasn't this suspicious but as a person who has studied human behavior for some time, I can't help but see a pattern developing.

This afternoon, Mattie played with Linda and Mary (a wonderful volunteer, who you may recall was involved in our strolling ABBA hallway performance last week). While Mattie was with them, I went to the HEM/ONC parent support group. It was an interesting session, and it is always enlightening to hear what others are dealing with and how their family is adjusting. That term, "new normal" was used in the session. A term that should be permanently removed from the cancer lexicon. There is NOTHING normal about your child having cancer and each time I hear this propaganda, I want to scream. I think this is a principle propagated by hospital personnel to force us into compliance or acceptance. I am not sure a parent can ever truly accept having a child with cancer, I frankly think it is more a process of adjustment. I also find attending a support group rather challenging. It is hard to step out of my need to help others and instead serve as a participant, but none the less through helping or listening, I find I do feel better.

When I reconvened with Mattie, I found he was playing with Brandon, Mattie's big buddy. Brandon had his three month scans today, and is doing very well, thank goodness. Mattie had a great time with Brandon. They played with model magic, and a submarine, which Linda gave Mattie. Brandon is coming back to the hospital to spend more time with Mattie on Wednesday, which will be lovely! Jey, Mattie's "big brother," also came to visit with Mattie, and they started talking about Mattie's birthday, snakes, roaches, and April fool's day! In fact, Jey joked about getting Mattie a roach farm for his birthday. I got a huge chuckle out of that notion! I enjoyed chatting with Brandon's mom and especially enjoyed her wonderful cookies she shared with us.

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I end tonight's posting with a photo that my good friend Mary Ann sent me tonight. This is "Margaret's bush," or so we have named it. Mary Ann and I track this bush throughout the seasons. It is a rose bush, and given that my friend Margaret loved roses, we affectionately call this beautifully large bush by Mary Ann's home.... Margaret's bush. 

Clearly the bush is beginning to bud.... a signal that spring is upon us finally. 

Monday, March 30, 2015

Monday, March 30, 2015

Tonight's picture was taken in March of 2004. Mattie was looking at Peter and smiling away and without him knowing it, I snapped a photo! That was when I captured some of Mattie's best moments...... when he did not know he was on camera. You got to love that smile!!! 




Quote of the day: One doesn't have to operate with great malice to do great harm. The absence of empathy and understanding are sufficient. In fact, a man convinced of his virtue even in the midst of his vice is the worst kind of man. ~ Charles M. Blow


Over the weekend our friend and supporter, Kristen, sent me a link to an article by Paula Stephens entitled, What I Wish More People Understood About Losing a Child. Peter and I met Kristen several years ago when she moderated a parent panel that we participated in at a palliative care conference in Washington, DC. This was one of our first speaking engagements after Mattie died and Kristen made it a very positive experience for us. Now many years later, and having worked on other events with Kristen, we are still connected.  

Ironically I have to admit that not every article written by a grieving parent resonates with me. In fact that maybe one reason why I am NOT your ideal support group candidate. I do not find comfort from what other parents espouse. On the contrary I have found some of the words parents have shared with me over time to be very hurtful and judgmental. Sometimes parents think that their way of grieving is the best way or that their suffering has been the worst. In either case, I find neither stance helpful to hear. 

When Kristen sent me Paula Stephens' article, I immediately scanned it and saw that Paula, who is a grieving parent, developed a list of five tips you can use to help a grieving parent. Typically LISTS set me off! I find lists problematic because they usually simplify a complex process or can be very dogmatic and judgmental. So I sat back expecting NOT TO BE HAPPY! But what I found from this very simplistic tip list was actually something VERY meaningful and powerful. Why Kristen sent it to me was because she felt that while reading Paula's words, she was hearing me. Because I have been saying these feelings and thoughts for years in my writings on this blog. 

Though Paula lost her son Brandon, who was in his 20's (not from cancer), and I lost Mattie at age 7, we see grief and loss from a similar vantage point. We are not pathologizing it, which I AM SO SICK of reading about. If one more article tells me about pervasive grief disorder (complicated grief) I am going to smack the author (you lose a child or someone very close to you, and have it redefine your life, and let's see how well you do?). I think if the world could remember to interact with us on a regular basis following the five steps below, perhaps we wouldn't seem so disengaged, sad, and disconnected. 

In any case, as Mattie's birthday is fast approaching this week, I have to say I completely concur with Paula's tip#3! There are two days in the year that are very problematic for us grieving parents. Certainly there are others, but two in particular Peter and I retreat from. We retreat because the world doesn't know how to deal with us and we don't know how to deal with the world. That is Mattie's birthday and the day Mattie died. There are no more parties, cards, or celebrations on his birthday. Why? Did he not exist? I have no idea, to us, he exists in spirit. So instead of dealing with the day, we leave our surroundings. 

Paula's fourth point is also something I write about often. It is hard to find happiness anymore, and I hate when people even use the term with me. I am not sure if it is survivor's guilt, or the fact that life will never seem as joyous without Mattie's presence in it. It is as if a spark went out that can't ever be rekindled. Sure we move forward, we find a way to reinvest in the world, but allowing myself to feel happiness doesn't feel good and in many cases I will remove myself from happy occasions or not even attend them in the first place because they aren't part of my world anymore. 

I end tonight's posting with Paula's five tips and a link to her article:

1. Remember our children.

2. Accept that you can't "fix" us.

3. Know that there are at least two days a year we need a time out.

4. Realize that we struggle every day with happiness.

5. Accept the fact that our loss might make you uncomfortable.

http://www.mindbodygreen.com/0-17928/what-i-wish-more-people-understood-about-losing-a-child.html

Sunday, March 29, 2015

Sunday, March 29, 2015

Tonight's picture was taken on March 7, 2007. This photo always makes me laugh. For many reasons. First it is March! One would hope that given the time of year, Spring weather would be apparent, but of course as is typical in DC, March is very changeable and cold. So that year it snowed! Mattie loved the snow and was out on our deck and collected all that he could find to build snow castles. After the castles were constructed Mattie topped them off with a stone decoration. This was actually the same process he followed with his sand castles at the beach. When I saw the similarities that day it made me laugh! 


Quote of the day: Healthy citizens are the greatest asset any country can have. ~ Winston S. Churchill


Our head psychosocial researcher, Lori, sent me an article in the New York Times today entitled, "Teenagers Face Early Death, On Their Terms." The Times interviewed her about teenagers dying and how to assist them with their advanced care needs and wishes. The reason they are interviewing Lori, besides her clinical experience, is because she developed a tool called "Voicing my Choices" that is a booklet designed to help teens and young adults talk with family members about their feelings and wishes on sensitive and hard to discuss matters such as end of life care, funeral arrangements, how they want to be remembered, and if they are incapacitated and unable to speak -- how they want visits to be carried out when loved ones are present. Voicing my Choices is a free tool that can be ordered at: https://www.agingwithdignity.org/voicing-my-choices.php.

If you should look at the NY Times article below you will find that it has a companion video to it that highlights one of the young adults discussed in the article, Karly. Karly is 20 years old and has a genetic disease, the same disease that apparently killed her older sister. The article discusses how Voicing my Choices has helped Karly. But that is NOT why I am attaching this article to the blog. I am attaching the article to the blog because Karly and her family's story deeply touched me today. The video, I thought, was meaningful. Karly has every right to be balled up in a corner, anxious, or hating the world. Yet she is NONE of these things. Actually no one in her family is this way. They seem to tackle the world head on, which has been my experience with many families who have to face adversity. You find inner strengths you never knew you had. From the outside looking in, we are in awe. But from my experience while going through something of this magnitude, you can think of NO OTHER WAY to live your life that will be productive for yourself or your child. So I deeply related to Karly's mother.

Yet when I observe Karly, it does make you appreciate the fact that you are healthy. When I hear children and teens around me wining about nonsense I get very upset. I get upset not only for my loss, but for children and teenagers like Karly. Young people like Karly really do not know what a healthy and normal life looks like and worse they live in fear that they will die and what will this mean for themselves and their families? 

As I told Lori today, I think Voicing my Choices is certainly needed for teens and young adults but the component that needs to be added is for the physicians! Physicians are very hesitant to talk about bad news and death and dying with patients and family members. Naturally physicians are healers and therefore their goal is to prolong and save lives. I have to imagine though in the training of our physicians in this Country we are doing them a great disservice because in the process of all their analytical skills we have failed to teach them the art of relating to patients as human beings and therefore confronting the realities of the human condition. Which is death. Medicine is not all powerful. In fact, so much about science is still unknown and if you doubt that, just talk to any oncology patient.  

Recently when I was at the Institute of Medicine workshop in Washington, DC, I was asked how I found out about Mattie's terminal condition and that he was dying. Mind you I DIDN'T bring it up in such a public forum. But since I was asked, I tried to convey the response in the most appropriate manner. Peter and I were NEVER told by a physician that Mattie was dying. In fact, we were all actively treating Mattie and doing all sorts of invasive procedures on him until one day, Debbi, Mattie's sedation nurse angel saw me outside in the hospital rose garden. It was there that Debbi told me that Mattie was dying and that I had the choice to decide what his death was going to look like. I was BEYOND stunned that day, I can remember it vividly. I knew Mattie's cancer had metastasized, since scans revealed that, but the doctors never told me that Mattie was dying within days! Of course by the time I put two and two together, Mattie could no longer speak. He needed to be knocked out on pain medications. We never had an opportunity to have a meaningful dialogue with Mattie about his wishes or to say good-bye. 

In any case, my candor about the fact that our physicians did not reveal that Mattie was dying clearly upset one doctor in the audience at the workshop. He later spoke up and wanted the audience to know that it is very hard for doctors to lose their patients and to also have to tell families that children are dying. Mainly he was implying that doctors care and get connected to their patients and was hoping that one of the panel professionals would have highlighted this and also discussed the need to support physicians. Understand the workshop was about the qualify of life issues of children and their families who are dealing with childhood cancer. Though I get his perspective, the support and training he needs comes from another conference and outlet in my opinion. But it speaks to the bigger problem which so many of us who care for seriously ill children (or anyone seriously ill for that matter) face, we are dealing with a medical system which can't handle failure. Failure is assessed as the medicine not working. When this occurs you can see the chaos begin to unfold in the professionals around you. 

As the article points out discussing dying is a hard topic because confronting the issue for families is painful but it may also signal that hope is lost. "Families don't want to face it (dying)" .....that is the excuse doctors and mental health professionals espouse in many cases about families, but I would suggest that this issue goes two ways. I am not sure professionals are comfortable approaching families about dying either! It isn't ONLY the families who have the issue! I am not sure any of us wanted to face Mattie's death. But I do know that when it came down to the last days when he was actually dying, I wish I knew that was happening before he became unconscious and unable to process what we were saying in a way that was discernible to us. 

Teenagers Face Early Death, On Their Terms
http://well.blogs.nytimes.com//2015/03/28/teen-advance-directive-end-of-life-care/

Saturday, March 28, 2015

Saturday, March 28, 2015

Tonight's picture was taken in March of 2008. Mattie came home from school one afternoon and wanted to go outside and fly a kite. Fortunately our commons area was the perfect place to do this in the city. The beauty about this space is there are no cars and it is walled off from the street. But from a kite stand point, there is a wind tunnel as you head down the walkway of our space. This was where Mattie first learned to fly a kite. What I also notice though are the evergreen potted trees Mattie was passing while running by our neighbor's home. You can see them, the kite was practically hitting them. Well our neighbors got tired of those trees and were going to throw them out! Until we rescued them. These trees are in Mattie's memorial garden which is outside his bedroom window in our commons area. While I work on the computer and look out Mattie's windows, I can see these trees. These trees have grown significantly and the ironic thing is...... trees they thought were dying are actually really THRIVING! 


Quote of the day: Without habit, the beauty of the world would overwhelm us. We’d pass out every time we saw— actually saw— a flower. Imagine if we only got to see a cumulonimbus cloud or Cassiopeia or a snowfall once a century: there’d be pandemonium in the streets. People would lie by the thousands in the fields on their backs. ~ Anthony Doerr


It seems to me the only "habit" we have in DC is grey weather and cold temperatures! We are officially into spring and today felt like winter. Blustery, frigid, and grey. Absolutely depressing. I see some people getting the mulch out and perhaps attempting to plant. You got to be kidding me??? I wouldn't! It is frigid out and too changeable. I think a sunny and warm day here in DC may cause chaos and euphoria here. 

The joke in our home today was Peter was balancing two technology projects. One for his company as well as helping me with the Foundation's Walk website. Peter has been working around the clock on his own work, as his company has a big system launch on Monday, but while he was dealing with that today, he found a bug in the software I was using for the Walk website and called the company to report it! They were clueless about it!!! But Peter was correct and now they are fixing their system, which affects all their customers! Got to love it now??? I told Peter they should give us a discount for his work today.  

In addition to website work and working to redesign the whole new look and feel of the Foundation's Walk, I also am now fully focused on the Foundation's raffle. So needless to say I have my hands full on all levels. 

I end tonight's posting with a photo of "Mr. Lizard on the wall." My mom sent me this photo today. While we are freezing in DC, my parents are very warm in Los Angeles, so much so that you can see a lizard is basking outside in the garden. Mattie would have gotten a huge kick out of this. In fact, I have two plastic lizards on the dash board of my car that are Mattie's. Mattie loved anything creepy and crawling. After Mattie died, I found a green plastic lizard in my car and Peter found an orange one in his. So they are now united on my dash board. 

Friday, March 27, 2015

Friday, March 27, 2015

Tonight's picture was taken in March of 2009. Mattie was at the opening reception of the children's art gallery at the hospital. There were all sorts of activities and the volunteer musicians from the hospital came to entertain the kids. As you can see Mattie was right in the mix and he had a booklet that they gave him to try to sing along. In a way all the volunteers knew Mattie because they saw him every week. When you live at the hospital and get all your treatments on an inpatient basis, this familiarity is bound to happen.





Quote of the day: Kind words do not cost much. Yet they accomplish much. ~ Blaise Pascal

I spent another day glued to the computer working on developing the Foundation's Walk website. While working today, I received this adorable photo through email. This cute duckie flower arrangement is for a little girl's birthday party which is being celebrated this weekend. The little girl's name is Gigi and her uncle is Brandon, Mattie's big buddy from Georgetown. Mattie and Brandon were diagnosed with cancer around the same time in 2008, and despite their significant age differences, they became good friends. Brandon really looked out for Mattie and was a dedicated friend to Mattie until the end. In fact, the day Mattie died, Brandon came to the hospital and sat with us. It wasn't easy for a young teenager at the time to sit in a room with a dead friend! But Brandon did it! Brandon and his family come to every Foundation Walk as well. Today's photo was sent to me by Brandon's sister, Ashley. She wanted me to know that as she created Gigi's centerpiece, she put in two butterflies in honor of Mattie. Why?? Because Mattie and Gigi share the SAME birthday..... April 4th! 

Thursday, March 26, 2015

Thursday, March 26, 2015

Tonight's picture was taken on March 28 of 2009. I don't think Peter nor I will ever forget this day at the Hospital. It was the unveiling of the children's art gallery. For weeks Mattie and I had been working on projects for this exhibit. Linda, Mattie's child life specialist, asked Mattie to think about what an ideal hospital would be like. Naturally as you can see from the photo Mattie conceptualized this in Legos! Mattie also created a wonderful story about his hospital, which was framed behind his Lego creation. This story remains up in the Hospital's art gallery to this day. 

Quote of the day: And gradually his memory slipped a little, as memories do, even those with so much love attached to them; as if there is an unconscious healing process within the mind which mends up in spite of our desperate determination never to forget. ~ Colleen McCullough


Tonight's quote truly fascinates me. It is a reality that anyone who has lost someone near and dear to them understands quite well. With time, the mind finds a way to either block out pain, rewrite what has happened, or it makes certain memories a little less vivid. Certainly that wouldn't be so bad if we are talking about the horrors of cancer and watching a child die a painful death for example. Yet it isn't only the pain that can fade with time, so do the other wonderful and more heartfelt memories. The ones you would like to capture for a lifetime. Such as the exact sound of your child's voice and touch, the way he used to laugh, think about things, and even how he used to smell. The platitude of time heals all wounds is not exactly true because I think it can cause great sadness and even anxiety to know that these memories are fading. Where they even a part of your life? My joke with Mattie's social worker, whenever I see her, is that I long from the days when we had just lost Mattie. The first year of loss and grief, which was horrific and raw, but at least it was very clear how I was feeling and the memories were crystal clear. 

I decided to share with you some photos taken from the children's art gallery exhibit back in 2008. This was a close up of Mattie's Lego hospital. In Mattie's hospital he designed hospital rooms for children that were large. They all had private bathrooms, large closets, and an outdoor play and garden area. There were tree houses for the children to play on and they could even watch the helicopters come in for a landing. Mattie designed his Lego hospital to correct for all the problems we experienced in our room! We shared bathrooms with other families, the rooms were very tight and I slept in a chair, there were NO closets, and forget an outdoor play space. It doesn't exist at Georgetown.  

I totally forgot about this poem entitled, Intensive Care. I did not exactly write the poem. I was talking to Liz, who was the visiting artist who came to the Hospital to work with the children and families. Liz took a liking to Mattie, and did many projects with him during his stay at Georgetown. Any case, one day while talking to Liz, she captured the essence of what I was saying and transformed it into poetry. She mentions a "noise maker" in the poem. She is referring to our sound machine. One of my former students gave me a sound machine as a gift while we were in the hospital. It was the BEST gift we ever received. We used it every night while Mattie was battling cancer and frankly we still use it to this day. We got conditioned to needing to hear the sound of rain at night in order to sleep. But in the hospital we used the sound of rain to drown out the other more noxious sounds that come from a pediatric intensive care unit! Sounds from machines and other dying children!

"Intensive Care"

Storage, or an assigned room, would be nice;
"Room at an inn,"
For the times we know we'll be back from treatment.

Always moving in, or moving out - sharing the same bathroom;
Showers away from home, 
The difficult parking....

All I want is a room with a view, Anything to look at but these blank walls, 
The monitor: the steady drip of medicine marching into battle -

Buzzers, bells and footsteps
Marking hours that mock time - 
Sounds my noise maker drowns
In a waterfall of rain, 
To wash away pain;
Send blessings to my sleeping boy -

And I sit here, amazed at the maze of the hospital;
Stuck here for months on end, 
Wanting movement of any kind,
To multiply "child life" by ten,
Support groups; a place to meet other parents
That is not too small, or cold....
Maybe, in my dreams, a terrace
A garden for children to play in, to be with our son
And breathe in open air -
"M's" Mother (Scribe - Liz Pester)

When Mattie was treated at Georgetown, there was no pediatric oncology unit. It was closed for renovation. So Mattie had all of his treatments in the PICU. A PICU is a very unsettling environment to be in. You are surrounded by children who are intubated and in critical condition. This can be harrowing to see especially when you are adjusting to your child undergoing chemotherapy and contending with a cancer diagnosis. Of course Mattie's cancer involved multiple surgeries, so in his case, he would have spent a lot of time in a PICU any way. But there are definite differences between a PICU and a regular oncology unit. In any case, in 2009, I decided to create an art collage for the children's gallery that advocated for the need to open back up the pediatric inpatient oncology unit at Georgetown Hospital. 

Wednesday, March 25, 2015

Wednesday, March 25, 2015

Tonight's picture was taken in March of 2009. It may look like Mattie was being wheeled down the hallway with a group of people, but with Mattie it was never just simple. Instead there was singing going on with this troop to ABBA music. Surrounding Mattie was Mary (in the blue jacket, who was a child life volunteer), Meg (who was a child life intern), and Brandon (Mattie's big buddy). Next to me was of course Linda (Mattie's child life specialist). We never went too far without Linda. She made life bearable for us in the hospital. 



Quote of the day: Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around. ~ Leo Buscaglia


I spent a majority of my day parked in front of a computer. I am trying to design our Foundation's Walk website from the ground up. The reason we need to do that this year is because the Walk is completely different and involves individuals and teams raising money for us prior to the day of the Walk. In addition, we need a mechanism for individuals to be able to register as teams and to also be able to fundraise for us online using secure websites. So thankfully Peter found the technology on line, but now I am trying to design a majority of the webpage myself. 

In the past our Walk webpage was designed by Peter from scratch. I actually loved the old site. It had a very personal feeling to it and we were able to use our own photos and Mattie's art work. However, given all that we need from this new website, we have to use a template designed by a company. We can try to tweak the template to have more of our colors and certainly our content, but it can never look like the original website Peter created. It was hard to say good-bye to Peter's original Walk website, but I know that given what we need now, we have no choice.

Over the course of the last two weeks I have studied other walk, run, and race websites to glimmer content from them that I wanted to add to our website. So slowly but surely our site is getting built. But there are certainly things I do not understand and today for example I was getting frustrated so I got into a live chat session with the company that makes the software for the Walk website. The funny part is by the time I finished with him, he was just as confused. So literally I had to give him an example of what I was talking about. I literally told him..... "we are going to create a walking team. You and I are the Apple Team. You are the team captain and I am a team member," etc! Examples help, because by the time I finished we both got it!  

In the midst of working today, I received this lovely photo of the Hunting Island State Park Lighthouse in South Carolina from my friend Christine. She was thinking of me as she was CLIMBING up the steps! I am a huge lighthouse affectionato. Peter and I started Mattie on lighthouses before he could walk! He climbed up many lighthouses on Peter's back! So it was lovely to receive this wonderful beacon of hope in the midst of staring at my computer screen today. 

Tuesday, March 24, 2015

Tuesday, March 24, 2015 -- Mattie died 289 weeks ago today.

Tonight's picture was taken in March of 2009. Mattie was in the child life playroom at the hospital and as you can see he was wearing a mask because he was neutropenic. Meaning his white blood cell count was very low, as an aftermath of the chemotherapy treatment he had the week before. Because there was a hands on activity in the playroom that he wanted to participate in, he agreed to put on a mask (to prevent him coming in contact with germs). Typically Mattie under no circumstances wanted to wear a mask. I am sure that tied into the fact that Mattie had sensory issues as a toddler/preschooler, yet he was motivated that day. Mattie loved anything that was messy and that he could get to manipulate with his hands and experiment with. That day they were making a slimy gel/clay like substance to play with and the "little scientist" came out in Mattie.


Quote of the day: Dreams and goals must come from the heart, not from ego. ~ Isa Zapata


Yesterday I was glued to the computer! So last night when my friend asked me if I wanted to get together today to walk and have lunch, I thought that was a stellar idea. Naturally I could have continued to work but I needed a break. We walked over four miles today in 40 degree weather. I am waiting for spring to arrive, but so far it still feels like winter! 

The friend I met today is a cancer survivor. Her daughter and Mattie went to preschool together and we have known each other for many years now. Certainly we knew each other as moms, but now we know each other through cancer. That seems to connect us on a completely different level. Catherine asked me about the Foundation today and took an interest in it, my role, and my accomplishments. It means a lot to me when someone asks me about Mattie Miracle, wants updates, wants to know next steps, asks me about the chapters I have written and so forth. Because while most of my friends are talking about their children, the Foundation is my child. Yet not everyone seems to have made that connection. 

Mattie Miracle's March newsletter was distributed electronically today and in the newsletter I asked individuals and corporations to consider sponsoring our "Challenge Wall" which is new to our event this year. In fact the whole Walk is being revamped to blow out the Walk component. When the Walk was originally created, it was designed by our care community in 2009, when Mattie was alive. Mattie couldn't walk, he was wheelchair bound and therefore our community created an event in which Mattie could feel their love and support. Over the years, the Walk has evolved to a bigger event but the nature of the actual walking has always been more social rather than directive and purposeful. This year we would like individuals and teams to fundraise for us before the day of the event. We feel this model is used effectively by other non-profits but it is also a wonderful way to build community spirit, awareness, and funds around our cause and mission. Then on the day of the Walk, there will be a "challenge wall" which will be sponsored by individuals and local companies. With each lap walkers take, you will earn a colorful cup to place in the chain link challenge wall. Once the wall is filled.... the challenge has been met!  Which means you will have helped us raise an additional $5,000 on the day of the event to support our psychosocial mission.

Our overall financial target for the Walk is $60,000 this year. All Walk proceeds go toward supporting the Mattie Miracle Child Life Program Fund at MedStar Georgetown University Hospital and our National Agenda to create and implement a psychosocial standard of care for childhood cancer. In any case, after our newsletter went out this morning, one of our supporters contacted me and his company would like to be one of our sponsors of the "Challenge Wall." So I am thrilled! If I could only clone Grant!

Monday, March 23, 2015

Monday, March 23, 2015

Tonight's picture was taken in April of 2009. Around the time of Mattie's birthday! On either side of Mattie were Jerry and Nancy! They are the famous music volunteers at the hospital that came into our lives on Day one, the night Mattie received his first dose of chemotherapy. Jerry and Nancy became an integral part of our support team at the hospital and practically visited us every week. They brought us music and conversation. A mental health diversion. They also played a "name that tune" game with Mattie that he absolutely loved. That particular night Mattie guessed all the songs correctly by hearing the first couple of notes and Jerry gave Mattie a prize! 


Quote of the day: The only escape from the miseries of life are music and cats...  ~ Albert Schweitzer


Last night I had the wonderful opportunity to go out to dinner with Jerry and Nancy. Over the past five years since Mattie died, they have reached out to us consistently to meet for dinner. We developed a special connection in August of 2008, and that bond remains with us today. It all started because we were in the hospital uniting around helping Mattie battle cancer. The beauty of Jerry and Nancy is they meet with Peter and I because they want to. They are not compelled to because it is their job associated with the hospital and they aren't looking for funding from us for something. They are simply part of our cancer story and as I learned last night, they value this component of their lives just as much as we do. 

How did Jerry and Nancy first meet us? Well I will never forget our first night in the hospital in which Mattie was awaiting his first dosage of chemotherapy. Back then Peter and I did not know which end was up. We were totally in shock and traumatized, yet we knew we had to be strong and figure this out for Mattie's sake. We were very scared just in general to be starting chemotherapy, but there was something quite intimidating to starting something so toxic for the first time at night. Like 10pm to be specific! Everything seems so much more daunting and out of your control at that hour! One has to wonder why a hospital chooses to begin chemo administration for the first time at 10pm, but that is another story! Any case as we were awaiting this horrible hour to approach, our nurse told us about a musical duo of volunteers who was out in the hallway and who wanted to come into the room and entertain Mattie. At first I was going to turn them away, but she convinced us to give them a try and to allow music into our room. Thankfully she did because it was the best decision we made that night and clearly into the future. 

Jerry and Nancy have different skill sets, but compliment each other beautifully. 
Jerry plays the keyboard and Nancy sings. But it goes beyond that. They verbally engage their patients and families, they get to know about their lives, and on that first night they were with us, I felt for a brief period of time that I was transported out of the pediatric intensive care unit. We forgot about cancer and were able to enjoy our time singing as a family. It gave me a sense of peace and security that perhaps we were going to be okay, at least for that night.  

After that first night encounter, we would see Jerry and Nancy practically every week at the hospital. Remember Mattie's treatment was all in-patient and over a 14 month period. So we practically lived at Georgetown Hospital. When you see someone every week, you start to get to know each other quite well and Jerry and I began to exchange emails. We would check in with each other especially about the "name that tune" game that he and Nancy would play with Mattie. Jerry wanted to make sure that whatever tunes he would play on the keyboard that Mattie would be able to identify them easily! So literally Jerry and I would have sidebar emails about what tunes he should play that would engage Mattie and make him want to participate during their visits! In my perspective when you think about this, that truly went above and beyond the call of duty of any volunteer. 

Mattie truly had a great deal of trouble relating to people, other than Peter and me as his disease progressed. His treatments left him with profound mental health issues that no adult should face, much less a seven year old child. But for the longest time music did make Mattie happy and he did enjoy visits from Jerry and Nancy. For which I will forever be grateful to them! Their visits perked me up too because Jerry and I happen to love show tunes and we would get a few of those in on the side!

Last night's dinner seemed to have flown by. I had the opportunity to relive some memories with Jerry and Nancy and also laugh! I can't remember when I have laughed so hard about all sorts of things. We even had our server, who looked like a young Whoopi Goldberg, in on the action! At one point she said she wanted to sit down and join us because we were the "fun" table! If she only knew the reality!!!!!!!!

Sunday, March 22, 2015

Sunday, March 22, 2015

Tonight's picture was taken on April 1st of 2009, around the time of Mattie's 7th birthday. Friends were beginning to bring Mattie balloons and gifts to celebrate his special occasion. I will never forget the cute book Mattie was holding up because it was a musical one that we both found entertaining! If you look closely at the photo though you will notice that there were silk screens hanging from the ceiling. These were screens that Mattie and I created together. In fact the heart above Mattie's head says.... "Mommy loves Mattie!" Whatever art we created in the hospital, I usually tried to display about the room. To make the room look more child friendly rather than like a hospital and of course Mattie's IV pole was always a conversation piece! We typically had origami cranes hanging from it, but Mattie also designed a caterpillar out of a cardboard box and attached it to the pole with every admission. Needless to say, these were conversation pieces with anyone we ran into, in the hallways. 


Quote of the day: One person's trauma is another's loss of innocence. ~ Jodi Picoult


When one thinks about Picoult's quote, you first may stop and pause and ask yourself.... what is she talking about? But after re-reading it and letting it sink in it does make a lot of sense. If you doubt this, then for the context of this blog let's operationalize her quote. 

For the past six years I have been writing about Mattie's cancer battle and then of course the grief associated with losing a child to cancer. When Mattie was alive and with us, I shared the vivid details of the daily battle, both the medical chaos and the psychological turmoil. I tried to bring our community into our world and shared with you how our lives were changing and how Mattie's childhood was literally being shattered before our eyes. As time progressed Mattie's cancer metastasized and with that we were forced to face the fact that he was dying. We did not have a long time to grasp that reality and within days we were making decisions about how to keep him comfortable and how to help him die humanly. Which for the record did not happen! Mattie suffered a painful death, and we unfortunately are the witnesses of that five hour torture. 

The multiple traumas I have and continue to write about on this blog are things that Peter and I live with, and yet in the process I have a feeling that those of you who read the blog on a regular basis would concede that your innocence (if it existed) regarding childhood cancer is gone. You know that is exists, that cancer can kill children, that it has psychological consequences on children and families, and these consequences can last a life time. Therefore Picoult's point is true..... one person's trauma is another person's loss of innocence. Sometimes as I always say..... I would prefer to be more innocent and naive.  

When you think about the multiple stories we hear in a given day either from people we know in our lives or through TV, the internet, or things we read, one has to wonder...... where is the innocence? We can almost become overloaded with thoughts and feelings. Which can be difficult to contend with and manage on a good day, but when you find yourself faced with your own trauma or challenging situation, how do we process these other stories and information around us? I know for myself, the answer is... I don't! I know I am not alone in this because under high stress, dealing with intense grief from Mattie's traumatic loss, there are times I do shut out the world in order to function. That could mean that I do not watch certain types of programming, the news, etc.. There are times I can integrate this into my life and times in which I can't. The irony is when I was talking to Kevin (the man who was stationed overseas, and was my flight companion in February) he and I were on the same wave length! He and I suffered completely different traumas and yet we cope with things in a very similar manner. We just understood each other instantly as we sat next to each other on a flight to Los Angeles, mind you we had never met before. Our traumas, shed our innocence, and it was as if we were speaking the same language despite the fact that our war zones looked VERY different.