Saturday, February 2, 2019

Saturday, February 2, 2019

Tonight's picture was taken in February of 2003. Mattie was 10 months old and getting around our home in his infamous "tot wheels." Mattie could zoom around corners and had a natural understanding for speed and spatial relations. I snapped this photo because look at where those little hands were! In my silver ware drawer!!! The ultimate multi-tasker. 



Quote of the day: When you can do a common thing in an uncommon way; you will command the attention of the world. ~ George Washington Carver

I met with my friend in cancer tonight. My friend, Ilona, runs a childhood cancer non-profit and at the heart of it all is an artist. Over the December holidays, Ilona started to create ornaments. When she showed me some samples, an idea came to me! Why not create Mattie Miracle ornaments in honor of our tenth anniversary this year. 

Ilona bestowed the ornaments on me and what my reader may not appreciate is the complexity of integrating our logo into the ornament. Ilona worked on this process for weeks until she got it just right. I think she did a beautiful job and what I like about these ornaments are two things.... they are handmade and supporting the work of the Chris Lantos Foundation (since we made a personal donation to the Foundation). So to me these are not just ornaments, but a meaningful thank you gift.  

My friend and I were talking tonight about our sons' bedrooms. When is the "right" time to clean out your child's room after he/she dies? I am not sure there is a good answer, as I am sure the answer varies for each of us. I have heard that some bereaved parents never changed a thing in their child's room, even after twenty years. I have also heard some parents addressing the room right away, and anything in between. It is a personal decision and one that I am not sure the outside world looking in would understand. 


In 2009, The Washington Post came to interview us. In the process they snapped this photo as I was showing them the state of Mattie's room. The room was no longer usable, as it turned into a warehouse, filled with all the gifts and items Mattie received daily. This is a component of Mattie's cancer journey that doesn't always get addressed. But the amount of items coming in daily for 14 months were overwhelming. I never complained as these items distracted Mattie and truly helped us get through long days in the hospital. Yet after Mattie died, every one of these items stared at me daily. It was painful and I felt like we were living in an episode of hoarders. However, it took me over five years to face this hoard head on. I did it alone, no one was around to help me by this point. The reason I did it? Well it wasn't because I cared about the stuff piling up around me, it wasn't that I needed the space, but here's the reason...... I did not feel this room represented Mattie's life well. The room was chaotic and showed the havoc of our lives. I no longer could easily see Mattie's creations or the beautiful things he created. It was this, that inspired me to clean out. I wanted the room to better reflect the beauty of Mattie. 

In 2013, I had created piles everywhere. Things that were going to be donated..... Goodwill, to other hospitals, etc. 

Though Mattie's room looks a little different now from this photo, you get the gist. The room went from total chaos to this beautiful Mattie Miracle color and completely organized. All Mattie Miracle admin work occurs now from Mattie's bedroom. 

Friday, February 1, 2019

Friday, February 1, 2019


Tonight's picture was taken in February of 2003. Mattie was ten months old and I captured him while playing. Wasn't this look priceless? Alert, smiling, and very engaging!






Quote of the day: Fears are educated into us, and can, if we wish, be educated out. ~ Karl Augustus Menninger


I wish I could take Menninger's advice! But frankly Mattie's experience educated me on cancer, and unfortunately I look at everything through a cancer lens. I don't think there is enough education you can give me, to shake that trauma from my head. Which leads me to today.

I got a call from my urologist's office letting me know that my routine urine test last week showed red blood cells in my urine. At that point, she might as well have stopped talking, because all I could think of was cancer. 

She explained that a normal result is 4 RBC/HPF (red blood cells per high power field) or less. Whereas I was in the 6-10 range. Therefore, more testing is needed! Naturally I then asked lots of questions to try to rule out the normal everyday explanations for this. But since this specimen was caught through a catheter, the likelihood of contamination or other issues are basically eliminated. 

So clearly I had to ask questions about next steps and testing. Testing which entailed a blood test today, and a soon to be scheduled ct scan and cystoscopy. About 8 years ago she did a cystoscopy on me and I thought I was going to throttle her, as she does it without sedation. To me it was torture beyond belief, so signing up for this again isn't high on my list. But I have no choice. 

As I have been told, the early stages of bladder cancer cause bleeding with little or no pain or other symptoms. Blood in the urine does not always mean you have bladder cancer. More often it is caused by other things like an infection, benign (non-cancerous) tumors, stones in the kidney or bladder, or other benign kidney diseases. Who knew one could hope for any other condition possible other than cancer! 

Meanwhile, I feel that my urologist is causing havoc in me life again. In February 2012, she sent me for a routine ct scan. Instead of the test indicating any issues with my bladder, it found several masses on my cervix. Not just any masses, as the radiologist felt the masses were an aggressive form of cancer (called adenoma malignum). My world once again spun around me and I had to find a gyn-oncologist. I actually went through about four or five gyn-oncologists, until I finally latched onto one who I trusted. She suspected I did not have cancer and with her I walked a journey for a year in which I was scanned every month to every three months to see if these masses changed in any way. Because if so, I would need a hysterectomy. Keep in mind I lost Mattie three years prior to all that happening. It was beyond disheartening and frightening. 

I am trying not to let my mind run away with itself now, but here we go again. Waiting for testing, waiting for results, and being totally helpless and in the hands of the medical community. Yet at the center of all of this are psychosocial issues! Because no one in this equation ever factored in that I was a mom who had a child, who died from cancer. So I may hear things quite differently from the average patient and yes I am afraid we bereaved parents need more hand holding when it comes to our health. An aspect of care that falls on deaf ears in the medical community. 

Thursday, January 31, 2019

Thursday, January 31, 2019

Tonight's picture was taken in August of 2002. Mattie was four months old and by that point absolutely LOVED rice cereal. One thing for certain, as a baby, Mattie was an eater! When you look at this photo, Mattie seemed a bit dozy, as that tended to happen around feeding times. It was like he was in heaven eating that his eyes got glossy!


Quote of the day: A moment's insight is sometimes worth a life's experience.  ~ Oliver Wendell Holmes

I really like Oliver Wendell Holmes' quote tonight. In a way this could be our motto. Our moment of insight (or in our case, 14 months of insight helping Mattie) has provided us with knowledge and experience for a lifetime. These insights from Mattie's cancer journey help guide, shape, and direct the Foundation. 

Today, I attended a webinar for a National Cancer Institute's (NIH) Request for Application. In essence a grant to conduct a clinical trial on improving outcomes in childhood cancer survivors. 

While on the call, this slide flashed on the screen. Basically it was pointing out that the grant would support interventions that address either the biomedical or psychosocial effects of cancer.  

The reason NIH is announcing this funding request is thanks to the STAR Act. A bill that Mattie Miracle worked on with several other childhood cancer advocacy groups. However, it is thanks to Mattie Miracle that the word PSYCHOSOCIAL is even incorporated into this bill. That may not sound like a big deal, but it is! Typically these types of grants are reserved for medical research. I am thrilled that there is now a new avenue of support for psychosocial researchers. 

Meanwhile, we have hit an all time temperature low this year. It takes cold to a whole new level. Look at the Potomac River. It is frozen! Despite the single digits and the wind, Sunny wants to be out and about in it. So I was right along side him. One of our walks was an hour long. In the first 15 minutes of that walk, I became absolutely numb, which made walking for an hour possible. 

Wednesday, January 30, 2019

Wednesday, January 30, 2019

Tonight's picture isn't exactly a photo! It is a video that I came across on You Tube. One day, while home from the hospital, Mattie decided to sit at the piano and just started to create. Mattie really wanted to learn how to play the piano, and was signed up for lessons that year. Until he was diagnosed with cancer. I am not sure what was more amusing... Mattie playing away or the phone ringing and Mattie basically telling me to answer it. 


Quote of the day: A little thought and a little kindness are often worth more than a great deal of money. ~ John Ruskin


Peter and I received an email today from a lovely social worker in Canada who we have the pleasure of getting to know. She worked with us on the development of the Psychosocial Standards of Care, we have presented together at conferences, and we continue to work together on the implementation of the Standards. 

When Peter and I met this wonderful professional in 2012, at our first think tank in California, we immediately liked her. What she was saying resonated with us, and it was abundantly clearly that she has respect and compassion for her patients. Which is why she is able to comprehend how challenging it is for Peter and I to have lost Mattie to cancer and yet living with this tragedy we continue to try to improve care for others. I sometimes believe people don't appreciate how emotionally difficult it can be for us to do the work that we do each day. Which is why receiving this message meant so much to me. I am sharing it below..........

Dear Vicki and Peter,

I always enjoy your newsletters and am always amazed at all you have accomplished. I just wanted to say that I had a chance to look at your January newsletter and looked at the You Tube 10th anniversary video.

It was so inspiring and such a tribute to Mattie in all you have accomplished and the number of lives you have touched because of his journey. You have brought comfort, compassion, and reduced suffering for hundreds of children and their families. Your footprint on the big stage of childhood cancer is undeniable and has set the stage for so much more good work.

Seeing the photos of you with Mattie always chokes me up. It brings such raw awareness every time of your loss and his painful story. Knowing what it cost you (and him) to be where you are at now is hard to describe. The good that has arisen from so much despair. What an incredibly beautiful boy.

I am so grateful to know each of you. Thank you!

Tuesday, January 29, 2019

Tuesday, January 29, 2019 -- Mattie died 489 weeks ago today. 

Tonight's picture was taken in September of 2007. Mattie was 5 years old and in kindergarten. I enrolled Mattie in an after school club called, construction club. Mainly because the club was run by Mattie's kindergarten teacher and Mattie showed interest in building and constructing. In any case, what you see in front of Mattie, was one of his creations. The club used a lot of every day materials found around the house! Mattie absolutely loved using a glue gun and tape and frankly construction club was a great experience for him, because he came into his cancer journey with the love of building. Which made it easier to entertain Mattie in a small hospital room, as he needed boxes and every day materials to create. I can't tell you how prolific Mattie was in the hospital! Many of his creations still surround us in our home today. 


Quote of the day: No friendship is an accident. ~  O. Henry



Today I went to visit my friend who is managing with metastatic cancer. It is hard enough to be diagnosed with cancer, but learning one has metastatic cancer adds another complicated layer to the equation. Mainly because with many metastatic cancers, a "cure" is no longer possible. The best medicine can do for you is to try to keep your disease stable, until the next medical break through is developed. A rather sobering reality if you ask me. Yet the medical profession seems oblivious in addressing this psychosocial reality. But I assure you hearing this news has consequences. 

In any case, while I was with my friend, her medical provider called her. In the midst of the phone call, my friend learned the results from the blood test she took yesterday. First of all, hearing anything but glowing news over the phone is hard, but when there are unexpected changes (which unfortunately always arise), then naturally a patient has lots of questions and concerns! I am not sure why I was surprised by today's call, as I know all too well the lack luster treatment of psychosocial issues, yet I found I was internally getting angry listening to my friend as she was talking to the medical provider.  

The medical provider told her the results, which had changed from the last time she took the test. So my friend had concerns and questions as to why this change! In fact, she asked to have an appointment with her doctor to consult on this and on how this would impact her next infusion of meds. Here's the kicker. The medical provider on the phone deemed my friend medically stable and therefore felt she did not need an appointment with the oncologist. Are you getting the picture? In essence the provider discounted the psychosocial issues my friend was describing and experiencing, as if none of that mattered and was also not her responsibility to address. 

I was hearing all of this and remained calm. Actually showing no emotion! As I figured my distaste for what I was hearing would not serve my friend well. Yet I remained by my friend's side as she was communicating by phone. Later in the day, my friend thanked me for being so calm. As it helped her, and enabled her to reframe the situation and instead understand that if the doctor wasn't alarmed she shouldn't be either. I am very impressed with my friend and her courage, but I know thousands of patients receive news every day over the phone. They also maybe hearing this news without someone next to them who can help process the disheartening transaction. What happens to them? A rhetorical question!!! All I know is, with the state of health care, Mattie Miracle's voice is needed more than ever, and we have a long way to go to change a system that refuses to examine and treat a patient holistically!

Monday, January 28, 2019

Monday, January 28, 2019

Tonight's picture was taken in September of 2007. This was Mattie's first visit to a ball park, to watch a Nat's game. He was 5 years old and took it all in. Mattie was more like me.... he preferred people watching and eating food, over watching the game. Fortunately, though Peter is a baseball fan, he handled Mattie's reaction to the game beautifully. 


Quote of the day: Walking is the best possible exercise. Habituate yourself to walk very far. ~ Thomas Jefferson


Have you ever noticed that everyone and their cousin is wearing a Fitbit? Or something to track steps, miles, and activity in one's daily life! Goodness, even without a Fitbit, your trusty cell phone will fill you in on how you spent your day. I know that prior to April of 2018, I regularly attended a zumba class and loved it. I liked moving around, hearing the music, and interacting with my classmates. However, in the spring, my hip pain began and from there, I was on a crash course to figure out what was wrong with me. As basic activities like walking up stairs or driving a car, were becoming difficult. 

I haven't been to my zumba class for ten months, because of my hip labral tear! In place of zumba, I have been doing physical therapy, twice a week. Today was my last therapy appointment. It was monumental! Between a cortisone shot in the hip and six months of intense therapy, I am now basically free of hip pain and do not need surgery. My goal is to keep up this trend, as my hip condition is a structural problem that can only be truly corrected by surgery. However, when the muscles in that region aren't inflamed, I am able to function beautifully. 

In line with my personal experience, Peter sent me an article today entitled, Exercise does help prevent depression. It is the age old question.... does lack of exercise cause depression, or does being depressed cause a lack of exercise? This new research study tries to answer this debate. In essence a lack of exercise can make a person at risk for depression!

Results of this study suggest that activity measured using accelerometers (a device that measures acceleration) did protect against risk of depression, but self-reported activity did not. The researchers propose this could result from bias and inaccuracies in self-reported physical activity. With accelerometer data, the researchers found that replacing sedentary behavior with just 15 minutes of vigorous physical activity, like running, or an hour of moderate activity, like fast walking, reduces depression risk by 26%.

Physical activity has been linked to the release of ‘feel-good’ hormones in the brain that can lead to a positive mood. Physical activity can also reduce inflammation and improve heart health, both of which have been linked to depression. I do believe in the benefits of movement, which maybe why in part I wanted a big dog like Sunny. Big dogs need to walk, and therefore regardless of the weather, Sunny gets me up and out. But now in addition to walking, I have added other exercise routines to my week. I have found these exercises not only help my hip and back, but after I do them, they help my mood. With winter, the motivation to move and exercise does dwindle, or at least it does for me. However, I am motivated to avoid surgery and to manage my own pain. Which puts me back in control of my physical movement and ultimately my mood. 


Exercise does help prevent depression, research shows:

https://cosmosmagazine.com/biology/exercise-does-help-prevent-depression-research-shows

Sunday, January 27, 2019

Sunday, January 27, 2019

Tonight's picture was taken in December of 2008. Pictured with Mattie was Tricia, Mattie's favorite HEM/ONC nurse. I know Tricia meant a lot to Mattie, because one day in the middle of the hospital hallway, he screamed out for her. When she ran over to see what was wrong with him, he told her..... "I love you." High praise from Mattie as he did not use those three words often. Tricia understood that Mattie needed to be a kid and to have some control over the process, which was why she had no problem getting down the floor with him, so he could continue playing through his infusions. 


Quote of the day: ~ Life isn't about finding yourself. Life is about creating yourself. George Bernard Shaw


I would say tonight's quote is quite accurate. However, in the process of creating, I find myself. This week, Peter and I were on a conference call with the Association of Pediatric Hematology/Oncology Nurses (APHON). Mattie Miracle is partnering with this national association to offer three evidence based practice grants. Our hope is that the grants will assist in the implementation of the evidence-based Psychosocial Standards of Care for Children with Cancer and Their Families. 

In any case, while chatting with APHON by phone, we suggested that the grant advertisement also include a video from Mattie Miracle. They loved the idea! Of course you know what that meant?????????? Yes the creation of another video! So today, Peter and I brainstormed! Peter picked out the music and slowly but surely we got this one minute video done. One minute is not a lot of time to convey a message, but I would say, I am getting good at video development!
At the end of the day, it is our hope that this video intrigues Association members enough, that they will apply for a grant! 


Mattie Miracle Evidence-Based Practice Grants:

https://youtu.be/njQoOQTuopE