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

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

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


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



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

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

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

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

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

A Remembrance Video of Mattie

Random Shots of Mattie, Family and Friends

April 4, 2015

Saturday, April 4, 2015

Saturday, April 4, 2015 -- Mattie would have been 13 years old today!

Tonight's pictures are a compilation of birthday photos. One for each beautiful year Mattie was with us. It is hard to imagine that a child can be born healthy and be fine up until age 6. This is something I will always grapple with, but of course it makes no sense and I have stopped trying to look for answers to life's impossible and unfair questions. The photos you see are the following: 2002 (Mattie's birth photo at Virginia Hospital Center - which Peter took in the nursery, while I was still in the operating room), 2003 (Mattie's first birthday - the theme was Elmo!), 2004 (Mattie's second birthday - the theme was trains), 2005 (Mattie's third birthday - the theme was Blue's Clues), 2006 (Mattie's fourth birthday - the theme was dinosaurs), 2007 (Mattie's fifth birthday - the theme was Cars from the Disney movie), 2008 (Mattie's sixth birthday - the theme was Scooby Doo), and 2009 (Mattie's seventh birthday was in the hospital and in the photo Mattie was pictured next to his big buddy Brandon). 


Quote of the day: It will take mind and memory months and possibly years to gather together the details, and thus learn and know the whole extent of the loss. ~ Samuel Clemens (Mark Twain) after the death of his daughter Suzy



After a horrific night of sleep, Peter and I had a slow start to our day today. Peter and I both lead very stressful lives on a daily basis, of which we usually don't talk about it or share it with others. Because naturally we feel who is going to listen to us or understand at times. Yet factor in the stress and that today is Mattie's 13th birthday and it is a bad combination. This afternoon we ventured to the Island Cow for lunch. Any one who really knows me, knows I am obsessed with black and white cows! So this restaurant theme was right up my alley. The wait to get into the restaurant was 30 minutes. So we sat outside in this clever chairs. While waiting, a cow bell started ringing and out came servers with a big bowl of ice cream singing happy birthday to a girl named Charlotte. Apparently today was Charlotte's 16th birthday. Peter and I were speechless. We could neither sing, nor acknowledge what was going on. Honestly my natural reaction was to leave the restaurant. I was that overwhelmed or to have an anxiety attack. But I somehow did neither and then Peter broke the tension by.... "well this is depressing!" I couldn't have said it better.

It is depressing because there is no Mattie to sing happy birthday to, no cards to give, presents to open, and a life time of memories to make. It isn't about one day, it is about a whole bunch of days, and a birthday just further signals the loss. CONSTANTLY.


I would have to say that Sanibel Island and Captiva are in my opinion under developed, more natural, and they have a more eclectic feel to them. Certainly in comparison to the East coast for Florida, which I am more accustomed to. To give you a feeling for what I am talking about, this is a photo I took of the outside of the Island Cow restaurant. 
They decorated the awning using Red Solo cups, they have a cage of birds on the right, and of course sand and adorable cow signs everywhere. It is kitchy!


This is a typical road on Sanibel Island! It is in essence a barrier island and there is a lot of scrub brush and trees lining the roads. There is only a one lane road going in and out and you have to take a causeway to get over into the Island, and MIND YOU that cost is a $6 toll! What is deceptive about all of this though is there are a ton of residents on this Island. There are houses everywhere, some small and some estates! But they are tastefully constructed into the land, so you can't see them from the road. 

We then went to visit Gulf Side City Park Beach. Naturally this is the Gulf of Mexico and not the Atlantic. The water is very warm and super calm. But the beaches in Sanibel and Captiva are known world wide for their shelling. I can see why! The shells are everywhere. Walking is very painful in a way. I came prepared with a bag to collect some precious pieces. 



While walking, we came across a cormorant just sitting there. He wasn't moving at all. Clearly he is used to people and didn't mind being photographed. In fact, the first time I saw a cormorant was when I visited Tampa years ago. I associated the West Coast of Florida with these distinct birds. 














Can you tell where the water ends and the sky begins? 














One of my favorite sea birds, the plover!















In honor of Mattie, we constructed this sign made out of the bountiful shells at our disposal.... MJB 13th! Mattie loved the beach, playing in the sand, and collecting seas. This seemed like the most appropriate place to visit today and an activity he would have approved of!















I end tonight's posting with my "Dearest Mattie" letter that I wrote and had on display for Mattie's celebration of life event, after he died. It is a letter that expresses the time leading up to Mattie's birth, how we felt about his pending arrival into the world, and the meaning he gave to our life. The feelings remain, though Mattie is no longer with us, and I believe it is my role to keep these memories alive for myself and those around us. 


-----------------------------------------------------------
MY DEAREST MATTIE


My Dearest Mattie,

It is said that parents love their children right from the moment they are born. However, in your case, our love for you began as soon as we learned we were going to have a baby. In fact, right after seeing your sonogram picture, we felt like proud parents. We posted those pictures everywhere. We shared these pictures with practically anyone who would listen or showed interest, and each September when I taught prenatal development in my undergraduate human development class, out would come your sonogram pictures to illustrate my points. Even my students got a sneak peek at our baby, a baby who would have a profound and meaningful impact on not just his parents but also every community he touched. Daddy and I did not only love you, we FELL IN LOVE with you, and that love grew stronger with each day. Your energy, spirit, love for life, intellectual challenges, sense of humor, and loyalty to your friends and family were only some of the wonderful traits we always admired in you.

This video is a tribute to you and your wonderful, yet short life. It seems fitting as we celebrate you, and say good-bye to your physical presence that I share the story about how you entered the world. The story of your birth had to be one of your most favorite stories to hear, and I found during times when you were reflective, overly tired, or in need of hugs and tenderness, the request for this story arose. In fact, I remember on August 5th, the day we found out that your cancer metastasized everywhere, you and I were sitting in the hospital’s rose garden, and you requested the story. It was almost as if you knew this was going to be a bad day, so in essence we might as well brace ourselves, cuddle, and prepare for this together.

Here is the story I always shared with you. A story Daddy and I will never forget. On April 2, 2002, at 11pm, I decided to head to bed. I was anxiously awaiting your birth, and as your due date approached, I couldn’t help but wonder, when will “the baby” be coming? I was restless and uncomfortable, so while in bed, I began to watch television. I was having trouble concentrating on what I was hearing, mainly because you were kicking up a storm inside of me. At which point, the kicking became so intense, that I literally felt something pop. You clearly wanted OUT, and you were going to kick your way into the world on your terms. Naturally after feeling this pop, I looked down at my tummy, and when I jumped out of bed, I realized my water had broken. This only happens to 25% of moms, and in retrospect, I should have guessed that this was just the beginning of how different our lives were going to be together. I immediately called the doctor and told her what happened. She asked if I was in pain, which I wasn’t, and she instead told me to get a good night’s rest, because my baby was going to be born the following day. Well I can assure you after hearing this news, sleeping was the farthest thing from our minds.

So on April 3, 2002, Daddy and I headed to the hospital and we were admitted to the maternity unit at 8am. The labor process began, but it was a VERY slow process for me, and at times as you moved inside my tummy, Daddy could see your head pushing against my backbone. Needless to say Dr. Mike, the anesthesiologist, became my favorite doctor that day. The hours kept rolling by, and still there was NO sign of our baby! I was getting weaker, I developed an 102 fever, and by 11pm I really had no energy to give birth to you. In addition, to how I was feeling, your oxygen supply was getting cut off, and your chin was positioned in such a way that would make the birthing process almost impossible. So it was at that point that the doctor recommended an emergency c-section. Things began to happen very quickly around me. I was signing paperwork for surgery and Daddy was being transformed by putting on a bunny suit so he could enter the operating room.

I had never been in an operating room before in my life, but I really wasn’t concerned at that point about myself. I was solely focused upon you. I was wide-awake for the c-section, but unable to see the process, which as you know, was probably a good thing. Daddy on the other hand found the whole thing very exciting, and began to videotape and take pictures of the surgery. Literally a team of people surrounded me and I will never forget Dr. Mike, the anesthesiologist who sat by my side, and talked with me and did whatever he could to keep me pain free.

When you have a c-section, your arms are strapped to the operating table, so I couldn’t move, and directly over my head was what appeared to be a rope with a clamp that was holding open my abdominal cavity. Normally by this point I would have passed out, but when it came to you, I developed strength I never knew I had. As the doctor began cutting, and finally got to you, the first thing she said was, “what is this?” That is NOT what you typically hope to hear when having a c-section. The doctor let me know that I had a grapefruit sized tumor on my bladder, and my immediate thought was, did this affect the baby? The next thing I knew, I felt her tugging, and I heard the loudest cry ever. Now here is the part of the story that I know was always your FAVORITE! I would always try to replicate the sound I heard coming from you that day, a sound that will always remain in a parent’s ear. It was a very large WAAHHH! WAAHHH! At which point the doctor told us two things: first, that you were one of the most beautiful babies she had ever seen, and second, that you had quite a set of lungs on you! I concurred with both statements.

The doctor then brought you over to me, and she felt that I needed to be the first person to touch you. So despite my arms strapped to the table, my right hand miraculously reached out and grabbed your tiny, soft, and cute foot. It was a moment I will always cherish, a moment in which I will never forget, and a moment I am so happy you too enjoyed hearing about. Each time I retold the story I felt as if it further bonded us together, and I always enjoyed hearing your comments, thoughts, and reactions to your story.

Seeing you made Daddy very happy! Though he was worried about me, since after the c-section, I had to have bladder surgery to remove the tumor, we both agreed that Daddy should stay with you and accompany you to the nursery. It is there that Daddy got to see you cleaned up, he learned that you weighed 6 pounds and 13 ounces, and that you had high Apgar scores of 8 and 9. Within an instant, Daddy became one of your fiercest protectors, and he cared for you for five days straight while we were in the hospital together. In fact, Daddy is the first person who changed your diaper, and though those were five very challenging days in the hospital, they were days that helped us form our strong family ties. Ties that were imperative and that we relied on for seven years of your life!

Your presence is so greatly missed. Nothing seems the same, is the same, looks, feels, or tastes the same without you in our lives. May you always know that Mommy and Daddy love you, cherish you, and that feeling will remain with us forever and always. Good-bye my Mooshi Moo angel and goodbye Daddy’s best buddy. With love from Una Moon and Daddy!

April 3, 2015

Friday, April 3, 2015

Friday, April 3, 2015

Tonight's picture was taken on April 4, 2002. Mattie was born a healthy baby at Virginia Hospital Center in Arlington, VA. I remember Mattie to be born at 1am and Peter tells me it was 12:37am. I was a real mess, so I would take his word for it! Being in labor for over a day can do that to a person! I delivered Mattie by emergency c-section and was running an 103 degree fever and it was there I developed my first migraine, which never left. As you can see, Mattie was born ON! Alert, and all his apgar scores (scores that assess the health of a newborn) were in the 9 and 10 range. So basically perfect! 



Quote of the day: When we feel love and kindness toward others, it not only makes others feel loved and cared for, but it helps us also to develop inner happiness and peace. ~ The 14th Dalai Lama


On the day before Mattie's birthday... Peter and I are traveling to Florida today. We try to leave town each year before Mattie's birthday. It just works out better for us that way for multiple reasons. So the next time you hear from me, it will hopefully be from a sunnier and warmer climate. 


We captured the daffodils blooming in Mattie's memorial garden in our commons space! 












You can see our bird feeders in the background. The birds are simply thrilled by our new feeder location this year because basically we planted every bush and tree in this space (which they love to perch on). These plantings all started when Mattie was a toddler and then of course now we plant bulbs each year in Mattie's memory. 




Next to the daffodils are the crocus! So it is a pretty yellow and purple combination!




April 2, 2015

Thursday, April 2, 2015

Thursday, April 2, 2015

Tonight's picture was taken in August of 2009. By that point we knew that Mattie's cancer had metastasized but we had no idea what that exactly meant in terms of his time left with us. Next to Mattie was his buddy Jocelyn. Jocelyn was also battling osteosarcoma and early on in Mattie's fight Jocelyn became an important ally. She was with us until the end.   


Quote of the day: The deep pain that is felt at the death of every friendly soul arises from the feeling that there is in every individual something which is inexpressible, peculiar to him alone, and is, therefore, absolutely and irretrievably lost. ~ Arthur Schopenhauer


Today marks the one year anniversary of Jocelyn's death. I do not think I will ever forget where I was when I heard about Jocelyn's death. Jocelyn's mom called me while I was away in Florida. We tend to escape town at this time of year because April 4th is Mattie's birthday. When Jocelyn's mom called me and told me Jocelyn had died, I was in total shock. Shock because I did not know that Jocelyn was that ill and was dying. This was Jocelyn's choice, of which I respect. As a young adult, I am sure Jocelyn was trying to protect me from losing someone else to osteosarcoma, but not just someone, someone who became very dear to us and helped Mattie through his intense battle. Nonetheless, I associate Fort Lauderdale now with Jocelyn's death, and some how the timing of Mattie's birthday which is already hard has another layer of complexity added to it..... the loss of Jocelyn.   

Jocelyn took her diagnosis and battle with osteosarcoma with great courage and determination. She was unstoppable and obtained a law degree in the process, got married, and was achieving great things both at work and within her community. Jocelyn had that kind of go getter attitude that was contagious, and I remember at her celebration of life ceremony everyone described her in the same manner. They may have used a different adjective, but the significance was the same! She just had a spark and a spirit, not to mention a sense of humor and paired together... watch out.

I remember one day in oncology clinic, Mattie was expressing his fear to Jocelyn about his upcoming limb salvaging surgery. Of course we all could relate to Mattie's fears, but no one quite understood the ramifications of losing a limb like Jocelyn. Jocelyn wanted to share with Mattie that even if he lost a limb, life would go on and he would still be able to do all the things he loved and live a full life. He did not understand her at all when she expressed that opinion and frankly I think he thought..... "she doesn't get it." He thought that because at the time Mattie did not know that one of Jocelyn's leg was amputated from the knee down. He quickly found that out when Jocelyn pulled up her pants and literally popped her prosthetic off! She did it in such a humorous manner that Mattie thought the whole thing was a riot and very neat. Mattie began to see that if Jocelyn could live without a leg, maybe he could too. Jocelyn helped turn around our mindsets that day. 

As I write tonight's blog, I found that something began glaring into my eyes. What was it? None other than Mattie Moon shining into the window. I have to think this is a sign from Mattie telling me that he has found Jocelyn and it is my hope in their world there is no such thing as osteosarcoma. 

April 1, 2015

Wednesday, April 1, 2015

Wednesday, April 1, 2015

Tonight's picture was taken in April of 2009. Sitting on either side of Mattie are Louise and Meredith. At the time they were attending the same school as Mattie. That particular day they came to the hospital to surprise Mattie with his own Easter Egg Hunt in the hallway. They brought him a beautiful basket and many wonderful eggs. I even recall that several eggs were actually golden in color! Mattie just loved the experience. Of course Mattie couldn't run around or even walk to pick up the eggs, but the girls helped Mattie from one egg to the next. Of course despite Mattie's condition, he could spot an egg with his eagle eyes. 


Quote of the day: I think that all of us are 5-year-olds and we don't want to be embarrassed in the schoolyard. ~ Helen Hunt 


In a way the Easter Egg Hunt tradition, that was started for Mattie by his care community, continues on at the Hospital. The hunt isn't actually planned by Mattie Miracle, but by the Charity Through Medicine Club at Bishop Ireton High School in Alexandria, VA. The club's president, Isabel approached me last year and asked whether Mattie Miracle would sponsor her Club and their service activities. All of these young women are interested in the field of medicine and service to others. In addition to running this Club, Isabel is a child life volunteer at Georgetown and has been helping Mattie Miracle since she was in middle school. So in essence she is no stranger to our activities and mission. 

What I love about tonight's quote is I do think an Easter Egg Hunt does bring out the five year old in all of us. Who can resist the idea of hunting for a colorful egg and the anticipation of wanting to know what is inside of it once you find it?


Before the Easter Egg Hunt
began, I snapped a photo of all the Club members who came to help. Since we are working in the in-patient pediatric units, keeping the number of volunteers down to a small group is important. The girls brought beautiful eggs and lots of baskets today! Of course the rabbit ears and flower headbands were a great springy touch!


In my option, or perhaps it was Mattie's, no event is complete without cupcakes. Normally I would make them, but Jess (one of the child life specialists) was kind enough to order these from Georgetown Cupcake. Georgetown Cupcake donates a ton of cupcakes to the hospital. This is where my Georgetown Cupcake addiction began. Every special occasion in the hospital, we were treated to these little loves and they are truly little gifts when trapped in a hospital room. I know one of the mom's I interacted with today was thrilled to receive and eat these cupcakes. As she said, you get stressed out in the hospital and you turn to sugar. ABSOLUTELY! I say it all the time. Forget the granola bars and healthy snacks. They really don't work. 


After the girls hid the eggs, then the hunt began! As you can see Sarah was assisting this little fellow. This little guy knew how to maneuver around and pick up eggs despite being tethered to a large IV pole and having his hand attached to a board, to keep his PICC line secure. 















Each of the children had their own style about them that they used to hunt and capture eggs in their basket. It was wonderful to see and experience. Some children looked for the eggs that were placed in more obvious locations and others went for the more challenging and hard to find locations. Like this young girl. What was so great about all of this is the kids really listened to Jess' instructions and tried not to take more eggs than their basket would hold. Thereby leaving eggs for the other children. In one particular case, I saw a young girl taken eggs out of her own basket and re-hide them because she was concerned there wouldn't be enough for a young patient who was about to enter the playroom. To me this act of kindness was noteworthy. 




I just love this particular scene! When I saw it, I had to snap it. I sat on this bench so many times when Mattie was a patient. In fact, this was exactly where Mattie did his Easter Egg Hunt in 2009. 
















This is another great scene in the parent lounge. This is typically where it gets frenetic with searching and finding. Clearly there was great success by all. 


But I would have to say one of the most memorable moments for me occurred inside of a patient's room. I waited outside the room while two students went inside to deliver eggs to a young male patient. The patient couldn't have been more than 4 or 5. The rooms are small and the patient was in the midst of having a physical therapy session in his room. So there was already a lot going on in his small two by four of a room, including medical equipment and a hospital bed. In any case, through the window of the room I could see that this little boy wasn't engaged with this physical therapy, nor was he doing his exercises. However, once the girls came in with the eggs and then hid them, he seemed to spring to life. He was up on his feet, using his arms, reaching up and down, and moving his body. At that point, I could see that the physical therapy was trying to engage him and took advantage of the fact that the eggs were really incentive tools to get this child to comply with therapy. I would imagine to those observing this just seemed like a fun, adorable, and nice thing to do. That we brought this little boy some joy and happiness. But actually I was profoundly moved by what I was seeing. 

I was moved because today I was transported back in time. It could have been 2009. Replace this boy with Mattie, replace the physical therapist with Anna (Mattie's physical therapist), and replace Katie with Linda (Mattie's child life specialist)! This is a scene that plays over and over in my head. Today's example was what coordinated care is all about, this is the type of care I saw Linda constantly implementing in the hospital and applying to Mattie. Coordinating the minds and hearts of two professionals together for example to do what was in the patient's best interest. What do I mean by that? Well Mattie had to do physical therapy to maintain some sort of mobility and muscle strength, however, there was NO WAY Mattie was going to do this without it being engaging and fun. Linda understood that quite well, whereas Anna did not initially. Linda had to bring Anna around to seeing this and together using many child life techniques integrated into Mattie's physical therapy sessions, Mattie began to be an active participant. Just like I saw with this child today. The beauty of child life is it is a profession that understands the developmental level and ability of children and teens and can help design strategies to that level to help alleviate fears, stresses, and other concerns. It was actually bittersweet in a way to relive these memories because unlike so many of the other activities I did in the hospital today, this one in particular reminded me the most of Mattie. 

March 31, 2015

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. 


March 30, 2015

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

March 29, 2015

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/