Saturday, July 30, 2016

Saturday, July 30, 2016

Tonight's picture was taken in November of 2002. Mattie was seven months old and by this time he was getting accustomed to bath time. It wasn't something Mattie liked to begin with. At that age, a baby's skin is so slippery, especially when wet. So despite his bath seat, I always had one hand on Mattie at all times. I held him with one hand and put the camera in front of him with the other. Clearly you can see Mattie was looking up at me and not the camera when I snapped this picture!!! The irony with Mattie was as he got older, he loved bath time so much that he would stay in the water until his skin got water logged. I would literally have to drain the tub to get him out!  


Quote of the day: One may have good eyes and yet see nothing. ~ Italian Proverb


For the past several weeks, I have been helping a family whose daughter has been very ill. She has been ill in various ways for a year, and has been unable to get answers to the symptoms being presented. Because this isn't my story, but the story of a young girl, I am not sharing more details here, other than I am telling you this much in order to put my next statement into context. This morning this young girl's mom wrote to me to thank me for listening and for my continued help. Why? Because most of her friends and family are no longer listening. This isn't my assumption, these are her words. 

I unfortunately understand her words but more importantly I am absorbing and valuing her unexpressed feelings and fears associated with these words! When friends and family walk away from us for one reason or another, this has dramatic consequences. It exacerbates ours feelings of isolation and also highlights just how different we are from the rest of the world. It is hard enough to be sick, trying to grapple with that feeling and the worries of NEVER returning back to normal, but when this is compounded with diminished emotional support, it is a recipe for disaster. 

When Mattie was battling cancer, it was truly a traumatic time for him, Peter, and myself. Yet during that time while Mattie was alive, I saw incredible feats of kindness, generosity, and compassion from our support community. Without this community, Peter and I could never have made it. I am not saying that lightly, I truly mean that. This community provided us with meals daily, gifts for Mattie on demand, and truly tried to support us financially as well as emotionally. This will be something that I will never forget and will always be grateful for. Which is why I try to step up and help others (though this was always a part of my nature and professional calling) because I know the enormous impact it has on both one's physical and emotional state. 

Now that said, once Mattie died, and we managed through the first year, I was then faced with another huge loss which I would never have imagined could be possible. After all what is worse than losing your only child to cancer? Well of course the answer is NOTHING, but that doesn't mean the ramifications of that loss ended there. Unfortunately not! A year after Mattie died, our support community slowly (and some rather drastically) started pulling away. I am not judging, because if I were in their shoes, I most likely would have done the same thing (Maybe?). How long can a support community truly provide support, and for how long is that support needed? I am afraid you may not like my answer! What I can say though is that the loss of one person after another felt like incredible emotional abandonment. 

I carry that feeling with me ALWAYS. So I know both the feeling of euphoria from super human community support and I also know the deep bleakness that can result when that level of concern and interest dissipates. Which is why when I connected with this young girl's mom, I check on them daily, because until they say they are okay and don't need that support, I will be there. I never want to be the cause of someone feeling abandoned, because I know that feeling all too well and I also know the feeling of being different. When you live in the world of illness, it is like entering into a whole new world. A world that speaks and has its own language and culture. It takes time to acclimate to this world but once you do, it in a way is hard to migrate back into Disneyland, which is what Peter and I call our society that isn't familiar with cancer and other life threatening illnesses. I would love a one ticket BACK to Disneyland, but unfortunately those ticket lines are closed to me. 

Friday, July 29, 2016

Friday, July 29, 2016

Tonight's picture was taken in November of 2002. Mattie was seven months old and I was sitting on the living room floor playing with him. I had all sorts of pillows propped behind Mattie so it would help keep him upright. As you can see he was fascinated by his cups. He loved the colors, shapes, and stacking and unstacking them. Of course as he got older, Mattie realized he could fill these cups up too! That made for endless play opportunities! 


Quote of the day: A word out of season may mar a whole lifetime. ~ Greek Proverb


Since Mattie died, I have had the pleasure (and I am being sarcastic, in case you can't tell), of seeing many medical doctors to deal with all sorts of physical issues that in my perspective are the by-product of stress and grief. Of course if you should have such a rational conversation with a medical doctor, I can tell you what happens. They listen, may say they are sorry for your loss, but then quickly move on. It is as if they are devoid of human and emotional skills and worse are unable to truly treat the entire person in front of them. The sad reality though is because stress and grief are hard to measure and quantify, these factors become inconsequential to them and are NOT considered to contribute to the problem presented to them. 

That sets the stage with the doctor I met today. About two weeks ago I was examined by a rheumatologist who believes I have fibromyalgia, but wanted me to consult with a sleep doctor to determine whether I have a sleep problem or whether my poor sleep is a result of pain. Though I do not feel like I need to see a sleep doctor, I complied and finally got an appointment today! 

You know when you meet someone for the first time and you feel like this connection is NOT going to work out? That was my immediate read with this doctor. But he broke Vicki rule #1...... he proceeded to tell me that he knew my situation BETTER THAN me! His assistant measured my neck of all things, because apparently the bigger your neck the more likely you are to develop sleep apnea. Honestly? Who comes up with this stuff. Fortunately I have a small neck, but that did not slow him down. I am sure everyone has heard of sleep apnea, how could we not with all those horrid CPAP machines we constantly hear advertised on TV or the radio! 

But sleep apnea is a common disorder in which you have one or more pauses in breathing or shallow breaths while you sleep. Breathing pauses can last from a few seconds to minutes. They may occur 30 times or more an hour. Typically, normal breathing then starts again, sometimes with a loud snort or choking sound. Sleep apnea usually is a chronic condition that disrupts your sleep. When your breathing pauses or becomes shallow, you’ll often move out of deep sleep and into light sleep. As a result, the quality of your sleep is poor, which makes you tired during the day. Sleep apnea is a leading cause of excessive daytime sleepiness.

Given that definition, I strong believe I do not have sleep apnea and having gotten reports from Peter, he too agrees with my assessment. But despite that reality, the doctor took a thorough family history of me, did a medical exam (particularly interested in my throat, uvula, and tonsils), and then quickly recommended a sleep study. My luck because there are high incidences of sleep apnea for patients with fibromyalgia and chronic migraines. He was so persistent that toward the end of our meeting I let him have it. I basically told him that I have enough going on right now, I don't really need his fishing expedition to find something that I don't feel I have! The worst part about this is insurance. My insurer insists that I do the study at home. No problem with me, until I heard that the home study is TYPICALLY inaccurate and therefore, the office always follows it up with an overnight sleep study in their clinic. But they first have to comply with the procedural steps of the health insurer! So in essence I will have to do a sleep study TWICE. 

I can't tell you how agitated I was with this whole interaction and then adding to all of this two sleep tests. The in home test involves a home based portable monitor that will record:

The amount of oxygen in your blood

Air movement through your nose while you breathe

Your heart rate

Chest movements that show whether you're making an effort to breathe

So I have a sleep study in my future in about a week and frankly I am not looking forward to the further interactions with that office. When I find that a doctor's temperament makes my blood pressure and stress level go up, that isn't a good sign!

Thursday, July 28, 2016

Thursday, July 28, 2016

Tonight's picture was taken in October of 2002. Mattie was six months old and I am not sure what I love more about this photo! Clearly this was NOT a happy Mattie. Which the face reveals! Mattie for the most part despised his strollers. I mean really HATED them, which was why we went through at least three strollers with Mattie until we found one he tolerated. Mattie did not like to be seat belted into place, and really did not like his feet being up in the air and not touching the ground. Yet when I look at this photo it reminds me of myself! I swear, I make that same face at times, and one of the amazing things about Mattie, was I was able to see myself within him on so many occasions. Which maybe why I understood his thinking and behaviors so well. 



Quote of the day: Faced with crisis, the man of character falls back on himself. He imposes his own stamp of action, takes responsibility for it, makes it his own. ~ Charles De Gaulle

The oncology Nurse Advisor had an article circulating on Facebook recently entitled, Comprehensive mental health screening recommended for some childhood cancer survivors. This article is getting a lot of traction on social media and what continues to stun me is this reality seems so shocking to most. I posted a link to the one page article below, but in essence the key point is this.........

Screening survivors for attention problems alone might miss symptoms of anxiety, depression, or headstrong behavior, which means missed treatment opportunities," Brinkman said (this is the article's author). Dr. Brinkman noted that adolescents with untreated attention problems and headstrong behavior are at risk for substance abuse as adults, and survivors with those symptoms may benefit from substance abuse prevention efforts during adolescence.

The words screening and assessment are almost buzz words today. Yet in the health care system conducting such a screening or assessment for mental health issues are almost unheard of. Well that is until recently!!! In the adult cancer world, they have made it mandatory for distress to be screened AT LEAST once ANY TIME after a patient has been diagnosed. To ensure that hospitals comply with this screening, such a standard of care has been added into the hospital re-accreditation process. Therefore if hospitals want to be re-accredited, then they need to screen and comply. 

Again this all sounds good in theory, but the better question is so what? So you screen, but what do you do with that information? That is the REAL question. What is the follow up like??!!! Certainly most hospitals will refer patients out into the community for mental health care if their distress score/measurement is high enough, but how likely is this to work? Well it may work better in the adult world than in the childhood cancer space. Mainly because it is hard to find the time to leave the hospital to seek this community support with your child (given the intensity of treatment -- there are few days out of the hospital) and second even if you have the time, very few practitioners in the community are well versed in the psychosocial complexities of childhood cancer and the impact on the family and the future.

We are at the stage right now were educating and bringing awareness to the psychosocial ramifications of cancer MUST happen in our society. Clearly the ultimate goal families wish to achieve is to have their child survive cancer. But surviving cancer comes at a high price. As I always say, the psychosocial issues DON'T end when the treatment does. In many cases, for both the child and the family, these issues last a lifetime. Knowing this, then why is the constant mantra and focus solely on the medicine? It is my hope in my lifetime that the message truly gets expanded into practice and that we see medicine and psychosocial care truly integrated into effective comprehensive cancer care. Until then, I realize I have a job to do!

Comprehensive Mental Health Screening Recommended for some Childhood Cancer Survivors

http://www.oncologynurseadvisor.com/side-effect-management/robust-mental-health-screening-encouraged-for-select-childhood-cancer-survivors/article/512097/

Wednesday, July 27, 2016

Wednesday, July 27, 2016

Tonight's picture was taken in September of 2002. Mattie was five months old and beginning to hold his neck up on his own and gain physical strength. I love the doctors and books that talk about the benefits of tummy time! Forget it! If you have a baby that doesn't like to be on his tummy, there is no amount of coaxing that will change this. I know I was frustrated at first, but then what I did was follow Mattie's cues. I have to say that following the child and NOT the advice was what ultimately worked and worked effectively! I am glad I learned this lesson early, because I truly believe this is what enabled Mattie and I to have a very strong connection and bond, a connection which was paramount during his cancer journey. 


Quote of the day: The whole problem with the world is that fools and fanatics are always so certain of themselves, and wiser people so full of doubts. ~ Bertrand Russell


Don't ask me how this is possible, all I know is it is possible! I spent the entire day (when not running chores) glued to the computer! So what was I doing?! Great question. Peter has been preparing me for the fact that our Foundation's newsletter format HAS TO CHANGE! It has to change because it is too wordy and isn't keeping up to speed with other organization newsletters in terms of style, technology, and format. Naturally we have the content and I am thankful this isn't a problem. 

As some of our readers may remember, Peter and I created a WHOLE NEW Mattie Miracle website last July (Mattie Miracle's website: www.mattiemiracle.com). That was a major undertaking frankly but it was sorely needed. Our old website was so hard to use, that we could never keep it current. When that happens, you might as well not have a website at all!!
However, our new website is more intuitive and windows based, so even I can easily use it! But Peter was correct, I would write a newsletter each month and do a great and thorough job there but wouldn't also migrate that information to the Foundation's website. In addition and MAYBE WORSE, the newsletter wasn't drawing people to visit our website. So I listened to Peter's feedback and though I don't like change or having to learn new technology, I realized it was in the best interest of the Foundation. 

Therefore, our July newsletter will look very different. Or at least that is my hope. Clearly it will have our red, yellow, and orange color theme, but it will be very streamlined, not wordy, and hopefully easier to navigate. The goal is to encourage readers to navigate to our Foundation's website to learn more about the summarized issues reported in the newsletter. We shall see. 

In any case, I spent the entire day just trying to figure out the technology and the formatting of things. The first time is ALWAYS the hardest and I have to believe it will get better! All of this will be worth it in my opinion if people land up going to our website to learn more about Mattie Miracle!

Tuesday, July 26, 2016

Tuesday, July 26, 2016 -- Mattie died 358 weeks ago today.

Tonight's picture was taken in September of 2002. Mattie was five months old! I title this photo..... a boy on a mission! Mattie just loved his walker, or as we affectionately called it, Tot Wheels. Mattie was born to walk and run and frankly had no interest in tummy time or crawling. He never did either! Which was why tot wheels was a God sent. Mattie loved the freedom of putting his two feet on the ground and taking off. He was great on hair pin turns and maneuvering this big plastic thing through tight spaces and doorways. 


Quote of the day: The purpose of human life is to serve, and to show compassion and the will to help others. ~ Albert Schweitzer

Last evening, Peter and I went out to a restaurant in Old Town Alexandria, Brabo. I haven't been to this restaurant in years, but always love going. Our waiter's name was Cosmos, and he tried very hard to make it an enjoyable evening. 

At the end of the meal, Cosmos gave me my choice of desserts for my birthday. I selected this cherry torte and it was amazing. Actually the whole meal was incredible... I had a lobster entree that was so tender and memorable! 

As Peter says, I am motivated by food! Which is true. Some people like gifts, I like good food. That wonderfully colored circle on top of the cake was completely made out of chocolate!

Yesterday afternoon, I went out to lunch with my friend, Heidi. Heidi was one of my first friends I met after Mattie died. I met her in my zumba class. Heidi knew about me through my blog, as she followed along during Mattie's battle. We know some of the same people, and she learned about us through mutual friends. Now years later, we both have stayed connected and Heidi's daughter, Isabel did many hours of community service for Mattie Miracle over the years. 

Heidi and her family just got back from Holland. On her trip she brought me back this beautiful delft butterfly. Are these glorious Mattie Miracle colors or what?!

A lovely butterfly that I received from Heidi's daughter. I loved all my butterflies, facebook messages, and kind emails and text messages yesterday. It definitely helps get through a day which in all reality should be positive. But for me, the cloud of Mattie's diagnosis always hovers over my birthday. 

Monday, July 25, 2016

Monday, July 25, 2016


Tonight's picture was taken on July 25, 2009, the last birthday I celebrated with Mattie. With the help of my in-laws, Mattie constructed this lovely lighthouse birthday card for me. A card I have always cherished. Mattie knew my love of lighthouses, and I tried over the years to share this fascinating with him. It is hard to believe that many of the items seen in this picture still remain, but Mattie is gone. 







Quote of the day: Age is not measured by years. Nature does not equally distribute energy. Some people are born old and tired while others are going strong at seventy. ~ Dorothy Thompson

Mattie was diagnosed with osteosarcoma on July 23, 2008, two days before my birthday. In many ways, I associate my birthday with cancer and Mattie's death.

With that in mind, yesterday we went to visit Mattie's memorial tree. I changed the bow around the tree to this sunny orange one, and try to do this on a regular basis so the bow reflects the season we are in!

This beautiful fountain was created by Mattie and Peter. It was Mattie's idea, since he knew I loved fountains and listening to the running of water. Mattie and Peter gave me two fountains in July of 2008! Literally right after Mattie was diagnosed. I would never have guessed that the fountains would out survive Mattie. Needless to say, these fountains are VERY important to me. They are not used in the cold weather months, but every Mother's Day, Peter cleans them out and starts them back up for me. 

This is the second fountain Mattie and Peter made for my birthday in 2008. They worked very hard on them and I cherish them! You will notice that this fountain has seashells in it! Mattie collected many shells, and I placed many of his shells in this fountain! 








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A 2016 birthday message from Virginia R. Sardi, My mom:

Happy Birthday Vicki,

You have grown into a remarkable woman and have made both Daddy and I proud of you through all the stages of your life. You are the reason we feel young in spite of our age because you challenge us to keep up with your quick mind and innovative ideas which keep bouncing off you like a nuclear chain reaction. We have to be fast and alert or else we will miss out on all the fun, excitement and adventure that are an integral part of your personality. 

You also were the apple of grandma's eye and gave her a new reason to live after your grandfather died from cancer. He was very dear to her heart but when you came along you completely filled a void created by his death. You were irresistible and she fell for you like a ton of bricks. The timing was perfect because she needed that lift just then in her life. The two of you were buddies and often plotted strategies together to accomplish your own agenda. We were aware of it all but enjoyed watching the two of you operate so smoothly and in sync. Great fun was had by all, as you two schemed to improve or get the best rooms at any hotel we were staying at and made sure that any agenda included your favorite activities. We remember those days with great fondness. 

I am glad that you became a caring and sensitive young woman who takes sharing and helping others so seriously that you are willing to try to make this troubled world a better place. You are to be applauded especially for the  Mattie Miracle Cancer Foundation you created to ease the mental and physical suffering of children with cancer and their families. It takes strength and stamina to bring an organization like this into existence and keep it thriving for so many years. It is basically a one woman show. You need to take a bow! You are admired by so many for the talents that you inspire in others. You have the power of passion in your voice that when heard by others makes them want to volunteer and offer unfailing support for you in your mission of hope. 

Your love of life is illustrated by your passion for nature and beauty. There is no tree, flower, butterfly or bird that you do not appreciate for its contribution to life and happiness. You are indeed the Renaissance woman of our times. 

Sunday, July 24, 2016

Sunday, July 24, 2016

Tonight's picture was taken in July of 2009. In the clinic, we were all celebrating Brandon's 19th birthday. Brandon was a close friend of Mattie's as was Jocelyn (also in this photo). Mattie and Brandon were diagnosed at the same time, but thankfully Brandon's treatment was effective and currently has no evidence of disease. Jocelyn was battling with osteosarcoma, just like Mattie. Jocelyn had been dealing with this disease for years and truly tried to mentor and support Mattie through his battle, every step of the way. She met Mattie by happenstance one day in clinic, and once she found out he had osteo, she took him under her wing. She helped to explain limb salvaging surgery to him and she even showed him her amputation. Jocelyn had a great sense of humor, and despite the frightening subject matter she was talking about, she made it very doable and kept Mattie engaged. In this photo, the three of them were creating alligators out of clips at the art table. Believe it or not, I still have one of these clips in our kitchen. It is hard to believe that two out of the three young people in this photo died. 

Quote of the day: A helping word to one in trouble is often like a switch in a railroad track..... an inch between a wreck and smooth, rolling prosperity. ~ Henry Ward Beecher

We woke up this morning to absolutely NO air conditioning in our entire complex. In all the years we have lived here, this has never happened. It is like an oven inside our home. Fortunately we do have portable fans and they are all out and blowing!

We wanted to visit Mattie's Memorial Tree today. As you can see it is thriving and truly growing! I placed a new orange ribbon around the tree. 

It was wonderful to see the two new ornaments that our friend, Margy, added to the tree. Both a beautiful glass butterfly from Wisconsin and a red heart! 

The funny part about all of this is the tree is so full with leaves, you have to practically step inside the tree to see all the wonderful decorations and ornaments! 

A close up of the new orange bow! I try to keep seasonally appropriate bows on the tree at all times!