A Remembrance Video of Mattie

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to me that you take the time to write and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful and help support me through very challenging times. I am 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 have stopped writing on September 9, 2010. However, like my journey with grief there is so much that 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 me, and most importantly thank you for keeping Mattie's memory alive.


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



August 5, 2016

Friday, August 5, 2016

Friday, August 5, 2016

Tonight's picture was taken in June of 2004. During our drive up to Boston from DC, we stopped at a McDonald's. Mattie loved french fries and vanilla shakes. So we got these items for him and as you can see I was sitting in the back seat with him. If the three of us were in the car, I typically sat with Mattie in the back seat until he got older. Peter snapped this photo because something funny was said between him and me and Mattie was absolutely cracking up with laughter. 


Quote of the day: Nothing is more contagious as an example. We never do great good or great evil without bringing about more of the same on the part of others. ~ Francois De La Rochefoucauld


A day never to be forgotten....... Seven years ago TODAY we learned that Mattie's cancer metastasized throughout his body and we went from actively fighting cancer, to finding a way to come to terms with the fact that he was dying!.
Four children a day in the US die from cancer. The medicine fails many of our children and the psychosocial ramifications of childhood cancer unfortunately do not end when the treatment does.

We remember always as Mattie's cancer and death guide our work and commitment to ensuring that psychosocial care is provided for all children with cancer and their families.


I entitle this photo, "Captain Mattie." Mattie loved boats and he would always tell people he was saving his money in a piggy bank to buy a boat! He wasn't talking about a toy boat, but a real boat with a motor. 

We couldn't give him that as his last request but instead we got him all sorts of remote controlled boats that we placed in a kiddie pool on our deck and Captain Mattie directed their journey in the pool.
Peter and Mattie building! I'm quite sure that in 2008 and 2009, we built every Lego kit possible!
Legos were Mattie's form of therapy! It helped us as a family have a productive diversion during very tumultuous times. It also helped us talk through different feelings while our hands and heads were engaged in building.
Mattie and me on Speedy Red! Speedy was Mattie's last wish... He wanted a ride on vehicle. I was afraid he wouldn't know how to drive the car or have the strength for that activity. After all Mattie was hooked up to oxygen and a pain pump!

Mattie took to driving like a duck to water! He just understood the mechanics of it all!














This afternoon, Peter and I went for a two mile walk. This is what we saw on our walk.......
I have always wanted to see an angel statue of hope inspired by Richard Evans book, The Christmas Box! We came across one today by happenstance. It was a Mattie sign to me as these statues are all across the country designed to help parents remember and honor their children who have died. A beautiful book, a beautiful statue and of course I remember my beautiful boy!

The bricks in front of this angel statue, have the names of local children who have died and left their families behind. 
The back of the statue says.....

The Christmas Box, Angel of Hope
Dedicated in loving memory of all the precious children gone too soon. 

Annual candlelight vigil December 6th at 7pm














Families clearly leave special stones by the statue. One said, "you are my sunshine" and another said, "hope." The statue is supposed to represent
hope to all parents who have endured the death of a child, it will be a grave site for parents who don’t have one. It will be a symbol of hope, a place to reflect, a place of healing and a special place for people to grieve.













Beauport, the Sleeper-McCann House, was the summer home of one of America’s first professional interior designers, Henry Davis Sleeper. Perched on a rock ledge overlooking Gloucester Harbor, Beauport became Sleeper’s retreat, backdrop for entertaining, professional showcase, and an inspiration to all who visited. After Sleeper’s death, Beauport was purchased by Mr. and Mrs. Charles McCann, who left most of Sleeper’s arrangements and collections intact.

The house has frequently been written about in books and magazines, with the first major article appearing in House Beautiful in 1916. It has been featured in such diverse publications as Architectural Digest, Country Living, and The Boston Globe, and has been showcased on televisions programs such as America's Castles.

Beauport, with its labyrinth of small rooms, layers of objects, and false doors, is a playhouse and a place that exists as a dream. The small rooms change shape, lead one to another without a quickly understood plan or even a simple hallway. Each room shows the interior designer at play, mixing, as a dream mixes, parts of history. Walking through, one catches hints of a deeper psychological message: the closet-sized writing nook, the small bedrooms tucked under the eaves, the unexpected windows. Beauport is a place of concealment and vistas.

A stunning wall of amber cape cod glass. He was an avid glass collector, something I absolutely appreciate. Frankly I couldn't understand how the McCann's could buy a house and keep all the items from the previous owner (Henry Sleeper). But after seeing Sleeper's amazing and extensive collections, you can see why someone would want to keep them!

The interior and exterior of the house contain Sleeper’s lifetime collection of curiosities, colored glass, folk art, china, and silhouettes in every nook and alcove. Each of the forty rooms is distinguished by a historical or literary figure, theme, color, shape, or object. No two rooms are the same, with each more visually dazzling than the last. The house is framed by newly restored Arts and Crafts-style terraces that include intimate garden rooms with dramatic views of the harbor.

 Purple Cape Cod glass
What I loved about these rooms, was how each one seemed to draw you to the outside!  There was always somewhere cozy you could sit and contemplate or conversate!








As Henry Sleeper was a premier interior designer, he used this bedroom as a showroom in a way. Remember this house was built in 1908. What is amazing about the house is that in EACH bedroom, there was always a closet, its own bathroom, and a mirror. It was something Sleeper insisted upon!
The bathroom associated with that bedroom. 




















The veranda, which was attached to the above bedroom. It was an amazing view of the Bay and you could see the sit of Boston in the distance!











 Me in the mirror
 Sleeper's library
One of my favorite rooms, the dining room. This photo doesn't do it justice, since the windows look out onto the Bay, and the windows open up!
The octagonal room
This room sticks out in my mind for one particular reason. Through the windows you can see the neighbor's house, who were a married couple. Sleeper was close to the neighbors and when the husband died, Sleeper planted lavender bushes outside this window and also placed lavender glass on the window sills. This way, when the neighbor looked toward Sleeper's house, she could always be reminded that Sleeper had not forgotten his friend! Lavender was the color of mourning and in essence remembrance. 

The outside beauty of the house!













You can see why this was the perfect places for a summer retreat and Sleeper entertained big wigs like the Dupont family and countless others! 

August 4, 2016

Thursday, August 4, 2016

Thursday, August 4, 2016

Tonight's picture was taken in June of 2004. That week we went to Boston to visit Peter's parents. Outside their home they have a tree swing. Mattie loved being outside and was getting the hang of being on a swing. Mattie particularly liked the time he spent with Peter and me, and having our undivided attention. Which we always gave Mattie right from the beginning. We did not want to miss out on any of the stages of his life and fortunately we made this decision because we wouldn't have gotten a second chance. 





Quote of the day: We deceive ourselves when we fancy that only weakness needs support. Strength needs it far more. ~ Anne-Sophie Swetchine


Today we went to visit Green Animals Topiary Garden in Portsmouth, RI. It is a very unique place, because it features topiaries, a wonderful Estate, and gardens. 

This small country estate in Portsmouth was purchased in 1872 by Thomas E. Brayton (1844-1939), Treasurer of the Union Cotton Manufacturing Company in Fall River, Massachusetts. It consisted of seven acres of land, a white clapboard summer residence, farm outbuildings, a pasture and a vegetable garden.

Gardener Joseph Carreiro, superintendent of the property from 1905 to 1945, and his son-in-law, George Mendonca, superintendent until 1985, were responsible for creating the topiaries. There are more than 80 pieces of topiary throughout the gardens, including animals and birds, geometric figures and ornamental designs, sculpted from California privet, yew, and English boxwood.


Green Animals is the oldest and most northern topiary garden in the United States. Mr. Brayton's daughter Alice gave the estate its name because of the profusion of "green animals." She made the estate her permanent residence in 1939. Upon her death in 1972, at the age of 94, Miss Brayton left Green Animals to The Preservation Society of Newport County. Today, Green Animals remains as a rare example of a self-sufficient estate combining formal topiaries, vegetable and herb gardens, orchards and a Victorian house overlooking Narragansett Bay.

One of the interior rooms of the estate. This house was filled with all the original furnishing that belonged to Alice Brayton. 










The Sailing ship--- Topiaries made in the 1940s, continued to be made from California privet. Privet is a semi evergreen shrub is fast growing with dark green, elliptic leaves. It was used because it produced relatively quick results. Since it was a summer residence, it was not a concern that privet was deciduous and sheds its leaves in the fall. It requires regular pruning and maintenance including weekly hand trimming. Some conservation metal supports have been discreetly positioned inside the forms to provide stability in wind and snow.

A Camel

 Flower basket
 Another favorite of mine, the giraffe!
A lion, since my astrological sign is Leo the Lion, I am kind of partial to this fellow. 
A bear, which apparently is a community favorite!





















The grounds also include a small orchard, a cutting garden, a vegetable patch and gourd arbor, and a damask rose garden. Vegetables from the garden are maintained by a community farm program and the produce is used by the Rhode Island Food Bank.

Beech tree -- which is over 160 years old, greets you as soon as you enter the property. 
There are over 35 formal flowerbeds, geometric pathways, rose arbor, grape arbor, fruit trees, and vegetable and herb gardens.

 Unbelievable Dahlias

One of my favorite flower sights.... the Sunflower
Isn't this artichoke a cutie? 














Beach house -- we had lunch by the bay today, and this restaurant is voted as one of the top scenic dining views in Rhode Island. 





August 3, 2016

Wednesday, August 3, 2016

Wednesday, August 3, 2016

Tonight's picture was taken in June of 2004. Peter's maternal grandmother was in the hospital in Connecticut and we drove up to visit with her. Gladys LOVED food and we packed all sorts of goodies to share with her when we got there. Of course I also packed a bag of tricks to keep Mattie occupied while in Gladys' room. Gladys was into her family and I have no doubt seeing Mattie's energy and getting to know him made her day a little brighter. 


Quote of the day: A character is the best tombstone. Those who loved you, and were helped by you, will remember you when forget-me-nots have withered. Carve your name on hearts, not on marble. ~ Charles Hadden Spurgeon




Peter and I are in Boston visiting his parents. When we landed at Logan Airport we stopped at Legal Seafood for lunch. This is a restaurant I always loved when I lived in Boston. Their fish is very fresh and the service is always professional. When in New England, a lobster roll seems like a must. 

When we arrived at Peter's parents' home, we were greeted by this beautiful wild turkey. This turkey has been with them since the Fall and he has been given the name, Bok Bok, since this is the sound he makes
I am not sure you can see this, but this is meeting of the minds... turkey versus cat. The cat is on the lower right, and he is black and white, and the turkey is walking down the steps on the left. Interestingly enough these two animals seem to tolerate yet are intrigued by one other. 














We visited the Brooks Estate today in Medford, MA. It was the perfect weather day to tour around..... beautifully sunny with low humidity. 

Shepherd Brooks was born in 1837. With the premature death of his father, he inherited significant assets before his graduation with an architect's degree from Harvard in 1857. He married Clara Gardner, niece of Isabella Stewart Gardner, in 1872, and the couple had three children, Helen, Gorham, and Rachel.
The design of his summer estate was a large part of Shepherd's life work. With a background in architecture and agriculture, he set out to re-shape his farm. The Shepherd Brooks Manor is in the Queen Anne style, characterized by eclecticism and asymmetry, elements of classical architecture, complex interlocking forms, a steep, pitched roof, and detailed chimneys. The primary exterior material is red brick, with brownstone sills and trim. The house has a granite foundation (with stones recycled from the Middlesex Canal) and a "Rutland Red" slate roof with copper flashing. The windows and cornices/trim were originally painted a deep green, as are the restored windows and shutters.
The house is organized around a large central hall that runs the length of the house, separating an elegant parlor and library on one side and an office and dining room on the other. A beautiful carved butternut staircase dominates the hall.


With over 50 acres of protected open space, the Brooks Estate is an environmental asset and historic landscape of great value to human visitors and wildlife alike.
Graced by a rolling, ascending topography, the property features Brooks Pond (ca. 9 acres), wetlands (ca. 21 acres), forest (ca. 25 acres) and the core historic landscape (about 5 acres).
This is a glaciated landscape with kettle holes, erratics and prominent ledge. The forest is primarily oak and maple, with numerous large trees planted by the Brooks family. The Pond, hand-dug in the 1880's from an existing marsh, anchors the Estate to the south.

A fun fact...... there are 65 to 70 species of birds that visit or live at the Brooks Estate each year. 

The Estate has been in great disrepair, but it is under a major three year renovation. Look at this beautiful terracotta that has been revealed on the veranda! 

I am signing off for tonight, but stay tuned for more Boston adventures!






August 2, 2016

Tuesday, August 2, 2016

Tuesday, August 2, 2016 -- Mattie died 359 weeks ago today. 

Tonight's picture was taken in August of 2004. Every August we would visit my parents in Los Angeles, it was a tradition. We all knew Mattie LOVED trains, so we introduced him to Travel Town in Griffith Park. Travel Town is a real experience for train lovers of ALL ages. The history of railroad transportation in the western United States from 1880 to the 1930's is the primary focus of the museum's collection, with an emphasis on railroading in Southern California and the Los Angeles area. The wonderful part about this is the trains are very accessible and children are allowed to walk inside, ring bells, sit in seats, walk on railroad ties, and so forth. Mattie absolutely loved it and despite living in Los Angeles during my high school years, I never visited Griffith Park until Mattie came into my life. 


Quote of the day: Idealism increases in direct proportion to one's distance from the problem. ~ John Galsworthy


I went back today for my follow up appointment with my rheumatologist. The doctor reminds me of my friend Dave from college. They look alike and their mannerisms are the same. Dave too is a doctor, but an anesthesiologist. The doctor went over all my blood test results with me, which were all negative. Remember that fibromyalgia is a condition in which everything else has to be ruled out first before it is diagnosed. We then discussed going to the sleep doctor. Understanding sleep is very important because I don't sleep well, and not sleeping exacerbates fibromyalgia symptoms. In any case, he could see the electronic notes that the sleep doctor sent him and noticed that the doctor already diagnosed me with sleep apnea. So he naturally assumed I did the sleep study! Funny, no? I was thrilled to see that this doctor is as perplexed as I am! He confirmed my suspicions about this sleep center. I do not care for doctors who already make their minds up about you without DATA! 

All I know is this sleep doctor has made me edgy and anxious since I saw him last Friday, and I don't sleep well to begin with, but now in addition to that I am worried that I am not breathing while I am sleeping. I really did not need that added worry on my plate. 

It wasn't like the rheumatologist spent a lot of time with me today, but it was what he said during our time together that made sense to me. He is cautious about medications and understands I don't want to take them anyway, so he is working with me on an exercise routine and other lifestyle changes to help manage pain. Though I agree with him, my sleep has to get under better control. I have to believe that there are times with fibromyalgia when the pain is tolerable and other times when things flair up, because I would say this summer has been a pip full of pain. Yesterday and today the exhaustion was so noticeable that I needed to take a nap. I DO NOT nap! My legs have felt like I am carrying twenty pound weighs on each and even walking seems very tiring. Mind you, I am a person who can typically walk several miles multiple times a day on average. 

The rheumatologist gave me some information about fibromyalgia today which does sum it up. It says people with fibromyalgia feel an amplification of normal pain signals. As if the volume control is set too high in the nerves, so things that wouldn't cause pain in most people, do cause pain in people with fibromyalgia. In addition, people with fibromyalgia have fatigue, and a kind of exhaustion that feels like the flu, and at times the exhaustion can be worse than the pain. Absolutely, I have hit that point this week! 

Tomorrow Peter and I head to Boston to visit his parents. That of course means that Indie has to be boarded while we are away. I have great concern about leaving Indie home alone, even if someone comes in periodically to check on her. I just never know if something will happen in the building and I don't want to take any chances. Thankfully we know our vet and are familiar with their kittery. Patches spent over a year living in that kittery when Mattie was battling cancer. They took good care of her, and though Indie was LESS THAN pleased with me today, it is ultimately in her best interest. Not unlike parenting a child, caring for animals also involves difficult decisions.....with the hopes of making them in the best interest of the living being you are caring for!

August 1, 2016

Monday, August 1, 2016

Monday, August 1, 2016

Tonight's picture was taken in August of 2005. Mattie was in Los Angeles visiting my parents. I snapped this photo of Mattie playing one morning in the kitchen. He literally put one of the boxes to his toy cars on his head, wore it like a hat, and decided to prance around like this. I think he was acting like a train conductor and he felt he needed an official cap. 

Visiting Los Angeles with Mattie was always a hoot for the first couple of days. Mainly because he was on East coast time and that three hour difference really affected him. At 4am, he would be wide awake and ready to start his day and play. Peter and I on the other hand were wiped out.


Quote of the day: I am certain of nothing but the holiness of the heart's affections, and the truth of imagination. ~ John Keats




I had the opportunity today to connect with a friend of mine who was also asked to consult with a sleep doctor. Like me she too felt she didn't have a sleeping disorder, but after testing was diagnosed with one. The irony is she and I are seeing the same sleep practice. I can't say that all sleep doctor visits are like this, but as we were putting our two heads together, I have come to the following conclusion. This practice seems very focused on diagnosing apnea. In fact, even in my first appointment before getting any actual data on me, the doctor walked me through the mechanics of apnea, with photos. Then he showed me sleep apnea machines. I made a note of this because to me this was putting the cart before the horse. In my opinion I was going to consult with him to rule out a sleep disorder, and in his mind he was sure I already had one. Frankly I would love to do an unofficial survey of patients who walk through their doors, because my hunch is a majority of them are diagnosed with apnea. 

This sleep practice also requires that you log onto their electronic system within 24 hours of being seen so you can communicate with your doctor. So I complied and when I logged in I could see the doctor's notes from my visit. In the notes it basically said that I reported apnea symptoms, which isn't true. There are many reasons why someone doesn't sleep well and wakes up tired, it doesn't have to be apnea to explain this. So I have been confronting this discrepancy in emails since I read the notes and stated my disappointment in their conclusions. In my opinion the doctor has judged me before I ever took a sleep study, which I am supposed to do in a week or so. 

When I met with the doctor last week, he told me that people with apnea tend to be overweight, middle aged men, with enlarged tonsils, frequent alcohol use, have necks larger than 16 inches, and are smokers. I don't meet any of these criteria, nor do I snore or has anyone ever noticed that I stop breathing when I sleep. Yet after expressing all of this he then says that not every one with a sleep disorder meets this profile and because I have a small throat and am a chronic migraine sufferer, who potentially has fibromyalgia, this correlates highly with sleep disorders. So here is the bottom line with this group..... you can be overweight, normal weight, skinny, small neck, large neck, etc... and still be diagnosed with a sleep disorder. 

What this proves to me ONCE again is that you have to be your own doctor and direct your own care because if not, certain doctors will railroad you. This practice strikes me as "the my way or the highway" kind of approach, which is why I am surprised that my internist even recommended this practice. It is unfortunate what this doctor's office has made me, and probably countless other patients, endure. Because it is very scary to think that this doctor knows my own sleeping patterns better than me, but worse wasn't really taking into account all I was telling him. To me there are many explanations for physical symptoms and one just can't jump to conclusions using a myopic lens. I love Peter's line..... when you are a hammer the world is your nail. This statement applies beautifully to the experience I am having with this medical practice. 

July 31, 2016

Sunday, July 31, 2016

Sunday, July 31, 2016

Tonight's picture was taken in November of 2002. Mattie was seven months old and we had already been introducing him to books. Mattie LOVED to see the pictures and to be read to. In fact, any time you engaged with Mattie, he loved it. Mattie was a very social, inquisitive, and active fellow.  



Quote of the day: The best rule of friendship is to keep your heart a little softer than your head. ~ unknown


In February of this year, I came to the conclusion that we needed to add furry friends back into our lives. The easiest way to add a cat to your life would be to go to a pet store. But I never do the easiest thing! Instead I wanted to rescue a cat from a kill shelter. I searched many places and finally landed up with City Dogs/City Kitties. I figured we would rescue a cat and a dog from one agency! Since the hurdles you have to jump threw to qualify are significant. We got Indie the Tortoise Shell cat on July 8th, yet we made a decision to adopt her on Independence Day, which is how she got her name. Indie is short for Independence. Indie loves to PLAY! If she could play 24/7 she would. Unlike most cats she wants to fully engage with you and be by your side all the time. As you can see, Indie LOVES our couch and pillows. Peter was playing with her using a string, which turns out to be her favorite toy!

Peter and I both snapped several photos of Indie today. This is her more contemplative side. 
When Indie needs a break, she tends to sit down with her back to us. She is quite a girl, and filled with personality. But very sweet and loving. 
 The beauty of playful Indie. 
Indie loves all sort of shoe laces and has no problem playing with them even while they are attached to you and your shoes. 
This is Indie's peanut butter colored toe. In fact, Peter calls Indie his PBT cat.... Peanut Butter Toe! 
I have become the crazy cat lady and I know in the fall, I will be adding 'crazy dog lady' to my title. I am very happy that we have many weeks with Indie before introducing a dog to the mix, because she came to us traumatized and anxious. She has truly come out of her shell and with each week she is with us we are seeing more of the real Indie.  


July 30, 2016

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. 

July 29, 2016

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!

July 28, 2016

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/

July 27, 2016

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!