Friday, February 8, 2019

Friday, February 8, 2019

Tonight's picture was taken in February of 2009. By this point in time, getting Mattie out of his hospital room was challenging. As the cancer treatment wrecked havoc on Mattie's mood and personality. Yet when I was able to get him to the child life playroom, there were moments of happiness. Moments when we blocked out what was happening to us and instead laughed and created together. In front of Mattie sat one of his amazing boxed creations. 


Quote of the day: We know what we are, but know not what we may be. ~ William Shakespeare



It is 10pm California time and I would say we had another full day. Running back and back between the hotel and the house. Overseeing the progression with the contractors, airing out the house, chores, and trying to develop some sort of routine. But nothing about living out of a hotel room is normal. It may sound fun, but it actually is challenging and stressful because when people are in your home, you do need to monitor the process. Especially when the issue at hand involves potential mold remediation. Needless to say, we learned today that the issues are significant enough, that my parents will have to be out of their home for at least a month. That too may be an underestimation. In any case, I am tired and signing off for tonight. 

Thursday, February 7, 2019

Thursday, February 7, 2019

Tonight's picture was taken in February of 2009. I absolutely love this photo that I took during the middle of a Mattie physical therapy session. Mattie was far more likely to participate in physical therapy if he had company and an entourage. In front of Mattie was his physical therapist, Anna. Behind him were Jessie (one of his art therapists) and Linda (his child life specialist). To me, this photo truly illustrates the beauty of psychosocial support. Because Mattie's therapists understood that they had to get to know the whole child and meet his social and psychological needs in order for him to comply with their treatment.  

Quote of the day: I tell you, in this world being a little crazy helps to keep you sane. ~ Zsa Zsa Gabor

We spent some time at the house today. As you can see, every room is sealed off with plastic. I feel better about the progress being made and the fact that whatever mold was in the area was removed. In addition, I am seeing that walls and the floor are drying. Of course, even with that said, a lot needs to be reconstructed. As walls have been torn apart, along with an entire floor. 

So the culprit that caused this leak is the window near the ladder. Literally rain flooded in through this window, which caused flooding in the walls, that seeped into the floor. As you can see, a good portion of the wooden floor has been removed!
















This is the state of the kitchen! Today, I decided to shut off the HVAC system, to prevent the smell and dust from traveling around the house. I also opened many of the windows in the house, with the hopes of getting fresh air throughout the house. After a few hours, I could feel a difference. More tomorrow!

Wednesday, February 6, 2019

Wednesday, February 6, 2019

Tonight's picture was taken in February of 2009. Do you wonder what was happening in this photo? Well we weren't playing a game per se, instead, this was a physical therapy session. However, in true Mattie fashion, he wanted me to participate. When Mattie was a toddler and was working with an occupational therapist for sensory motor issues, I learned right away, that if we wanted Mattie to comply with activities, that I had to do them too. Therefore, when Mattie was diagnosed with cancer, and needed physical therapy, I intuitively knew that I had step in and join him. So right in the middle of the hospital hallway, Mattie and I were playing a therapeutic version of the game Twister. 


Quote of the day: Life is like playing a violin in public and learning the instrument as one goes on. ~ Samuel Butler

Today we went to a museum that was about 45 minutes away from where my parents live. The museum is situated in such a beautiful and peaceful location, nestled up in the hills. With all the rain LA has been getting, the hills are lush and green. Notice though I am wearing a coat. This morning it was in the 40s!

The museum is not far from Camp Pendleton, a marine base in Southern California. We got to see a fly over.

My dad and me. While at the museum, we had the opportunity to chat with some lovely people. We met a delightful couple from Idaho and got to learn a little bit about their state and family. 

Meanwhile when we got back to the hotel this evening, we heard music coming from outside. We looked out our window and saw this! We literally watched an entire orthodox Jewish wedding from our window. At one point, a wedding guest was even waving at me!

Literally there had to be about 500 chairs set up for this wedding. However, I would say most of the chairs were unoccupied. 

The bride was escorted in by two young women. I really wish I understood what I was watching because I did not get the significance of these women. Since it appeared that the bride's parents and grandparents were sitting under the canopy, where the ceremony took place. 

Mind you as the bride was walking in, no one seemed to be paying attention to her. The men in attendance all were located together on the right hand side of the aisle and the women on the left hand side. The men were standing in groups, talking to each other, on their phones, and appeared disengaged from what was happening. 

Close up of the bride, who was veiled throughout the entire ceremony. So I looked up the significance of the veil and found.......The veil is representative of the idea of modesty and points to the idea that the groom is not only interested in the bride’s external beauty, which fades, but more so in her internal beauty, which she will never lose. However attractive physical appearances may be, the central focus in Judaism is the soul and character of an individual.

Once the bride got under the canopy, she and everyone else with her seemed to be walking in circles. Not just once but MANY times. I couldn't get it! So again, I went to Google and learned......At an Asheknazi wedding, once the bride and groom are under the chuppah (canopy), the bride proceeds to circle around the groom seven times. Just as God created the world in seven days, the bride is creating the couple’s new world, figuratively building an environment of completion and wholeness that the couple can only attain together. One interpretation holds that the bride is creating the “walls” of the couple’s new home, fashioning a fortress that will spiritually protect her husband and family. 



Meanwhile back to the MOLD front. We went to my parent's house today and the more I see and smell, the more concerned I get. Thanks to HGTV, of which I am a BIG fan, I have learned from the Property Brothers the challenges of mold. I have watched enough HGTV shows to know that remediation of mold differs by the number of square feet affected by mold. An area impacted by moisture that is 10 square feet isn't as complicated and can be managed by a contractor. However, once you get into a larger space (100 square feet or more) that is affected, then properly trained and equipped mold remediation workers should conduct the remediation. So I went on-line tonight and found the guidelines developed the the NY Department of Health, and are followed throughout the United States (https://www1.nyc.gov/assets/doh/downloads/pdf/epi/epi-mold-guidelines.pdf). Needless to say, being armed with information is helpful, because we are better able to direct the management of the problem. 

Right now two rooms in my parent's home are completed sealed off by plastic and duct tape, dehumidifiers are going 24 hours a day, and the smell is so intense as soon as you walk through the front door. I imagine the toxic smell is coming from the chemicals used to kill the mold. But given what I am seeing and smelling, I refuse to let any of us stay in the house for more than five minutes to assess each day's progress. Another full day!

Tuesday, February 5, 2019

Tuesday, February 5, 2019 -- Mattie died 490 weeks ago today.

Tonight's picture was taken in February of 2009. This was classic Mattie! I never saw other physical therapy sessions in the hospital looking quite like this! Mattie's physical therapist, Anna, truly rose to the occasion. She understood that getting Mattie to participate in therapy, meant that therapy had to be creative and engaging. Anna never disappointed. In order to get Mattie to move his body and use his legs, Anna would set up obstacle courses in the middle of the hospital hallways, and of course this intrigued Mattie and motivated him to participate. 


Quote of the day: I love those who can smile in trouble. ~ Leonardo da Vinci

My day started early, with a flight to Los Angeles at 7am. Perhaps I was tired or I don't know what, but the flight actually went quickly for some reason. In addition to that, there was a lot of turbulence. I literally landed in what seemed like a big cloud. Ironically it was warmer in Washington, DC today than it was in LA!

On my car trip from the airport, I got to know my driver. Literally he chatted with me for an entire hour. I got to know about him and to hear about some of his challenging car rides and the people he has had to deal with. When the ride was over, he literally said he felt better after talking to me. Then joked..... 'you should be a psychiatrist.' He made me laugh, and I said well in essence I am a therapist. 

Peter sent me this photo tonight! Apparently someone misses me!!




















I have had a full day today, as my parents are now living in a hotel indefinitely. Their home flooded from the massive amounts of rain LA has been receiving. Literally the walls and floors in two rooms were affected. I got to go to the house today to talk with the contractor. Needless to say, this is a serious and extensive issue, that in my assessment will take over a month to clean up and renovate the space. Naturally the concern is mold and if the space isn't dried out soon, the threat of mold becomes more likely. Being here a week, I hope to watch the progress. 

This evening, I received a lovely email from Bob Weiman, the associate head of Mattie's school. When Mattie was managing cancer, Bob came to the hospital very frequently to teach Mattie how to perform magic. Mattie absolutely loved his visits from the "Magic Man." Magic was very good for Mattie. Mattie felt good about himself because he was learning skills and techniques that were unique and helped him build rapport with his medical support staff. Mattie looked forward to Bob's visits and in those brief moments, you could see Mattie was happy and thriving despite all he was facing. 

I know how special these moments were for Mattie and for us, but it was lovely to see Mattie incorporated into Bob's blog posting. Which leads me to conclude that the relationship was mutual, Mattie and Bob learned something from each other. I welcome you to read this wonderful article for yourself. 

5 Reasons Your Child Should Learn Magic:

http://blog.sssas.org/5-reasons-your-child-should-learn-magic

Monday, February 4, 2019

Monday, February 4, 2019

Tonight's picture was taken in February of 2009. Sitting on a paper towel, in Mattie's lap, was a cupcake! By this point in Mattie's treatment, he LOVED and craved cupcakes. So when ever we were home between hospital stays, I would bake cupcakes and bring two dozen of them into the hospital with us. These cupcakes served as rewards for participating in physical therapy. Of course at that point we were focused on getting to the end of treatment and recovery, so anything that inspired Mattie to move his body and learn to walk again, we did!


Quote of the day: The world is so empty if one thinks only of mountains, rivers & cities; but to know someone who thinks & feels with us, & who, though distant, is close to us in spirit, this makes the earth for us an inhabited garden. ~ Goethe

Check out these two!!! This is what mornings are like for Sunny and Indie! Well that is of course until I am dressed. Once I am dressed, Sunny is very good at herding me around to go outside, to get treats and meals! Got to love these two! In a way, they really are pals. 

Many years ago, Peter worked at Arthur Andersen. It may have been one of the best companies to work for, and the reason why is it started with the people who worked there. Bright, committed, dedicated, and collaborative go-getters. The demise of Andersen is still something we talk about. After Enron, everyone at Andersen dispersed and had to find new professional homes. Several people from Andersen started their own consulting firm, which later merged with TeraThink. 

When Mattie Miracle decided to recruit corporate sponsors to our Walk in 2011, we reached out to our former Andersen contacts who now work for TeraThink. Make a long story short, they took a chance on us, and in 2011, became our first corporate sponsor. Now ten years later, they still are an important part of our Foundation family. They are Walk sponsors, candy collectors for our Item Drives, and have helped us run policy events on Capitol Hill. 

Today we learned that TeraThink will be a 10th anniversary sponsor of our Walk. Which means that they are donating $10,000 to Mattie Miracle. Receiving their email was the highlight of my day, maybe week or month. We feel honored to have their support in all ways. In line with Goethe's quote tonight, TeraThink is one of our connections who make this world an "inhabited garden."

Check out TeraThink's community page: https://terathink.com/community/

Sunday, February 3, 2019

Sunday, February 3, 2019

Tonight's picture was taken in February of 2003. To me this look was priceless! Mattie was sitting in his "tot wheels." This thing had four wheels and Mattie's feet could touch the floor. So literally it was like Mattie was driving a car inside our home. He absolutely loved the freedom to move around, and his smile captures that fact!


Quote of the day: The worst part is not mourning the loss of what you did have, but mourning the loss of what you were supposed to have. ~ Katy Dawson

This morning I received a message from my friend, Denise, who encouraged me to look at an article she posted to her Facebook page. Any one who knows me, knows I don't spend much time on Facebook, therefore if you want me to see something you either have to tell me or tag me. I don't spend time on Facebook mainly for mental health purposes, because when you have lost a child to cancer, seeing everyday posts about families can be overwhelming to see. Especially in mass quantities. 

Denise wanted me to read the article entitled, The worst part is not mourning the loss of what you did have, but mourning the loss of what you were supposed to have. It just so happens that we both know the young woman who wrote this article. In fact the author, Katy, has volunteered at a Mattie Miracle Walk.

I attached the link to Katy's article below so you can read her own powerful words and insights. But here's the take away for me..... Katy is speaking my language. I am quite certain those of us who are survivors of a trauma, communicate on a different plane. We have our own insights and language. Both of which can scare other people! Though Katy and I are facing different issues, the commonalities from the aftermath of a traumatic loss are noteworthy.  

When someone you love dies, your world stops. You expect every human being around you to be equally altered and affected. But that is not how it works. The world continues spinning, people continue working, laughing, having fun and living. They are living, while you feel like retreating. In fact, I would say that retreating from the world is one of the common ways we all deal with grief. Why retreat? Do we retreat because we can't face what we are dealing with? Perhaps! However at the core of it all is that traumatic grief leaves you feeling unsafe. If the impossible can happen, then how on earth can we have any control over our life or what happens to us? Retreating at home can help us feel secure in our unsettling world, but it can also protect us from many outside social and emotional threats we perceive in our world..... in my case, friends talking about children, family celebrations, and milestone moments (graduations, religious ceremonies, award ceremonies, marriages, baby showers, etc).

I recall during Christmas of 2009 (the first Christmas without Mattie), I discovered the Hallmark channel. I must have watched every Hallmark movie possible and while watching I was making candy cane Christmas decorations for friends from my bed. It was me, my glue gun, candy, and the TV. That was all I needed and could need. The movies kept my mind busy and the crafting kept my body moving.  In fact, I have found through talking to other people who have survived a trauma (and I am talking about any trauma), that we all seem to steer away from TV programs with loud noises, dark themes, and violence. Which may explain why I live in the world of Hallmark and HGTV.  

At the end of the day, Katy's title for her article captures the essence of a traumatic loss. The loss itself is bad, but it is the continual loss you experience each day/month/year which is exhausting. Lastly, the challenge (which is ever evolving) is to find a way to move forward knowing full well that what you had hoped for in the future (which so many around you have!) is never going to be. 


The worst part is not mourning the loss of what you did have, but mourning the loss of what you were supposed to have:

https://optionb.org/stories/the-worst-part-is-not-mourning-the-loss-of-what-you-did-have-but-its-mourning-the-loss-of-what-you-were-supposed-to-have-x1gqd3mg7?fbclid=IwAR0eAwjmli3y21-x4bBkrbtjVmF9H-Xo6pQR1kBiqsKr0i0b8MMvwTs_ZkA

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!