Saturday, July 18, 2015

Saturday, July 18, 2015

Tonight's picture was taken in July of 2009. A lot was happening around the art therapy table that day. Mattie had many friends with him such as his buddy Jocelyn, and his same aged friend Maya, but also visiting the clinic was his assistant head of school, Bob, who we affectionately referred to as the magic man. Bob spent the year that Mattie was in the hospital teaching him all sorts of magic tricks. Mattie gravitated to magic and to Bob. In this photo Mattie was about to perform a special trick with a ring. This trick was one of the hardest I think Mattie learned, and the cute story behind this trick was that Bob used this device when he presented his own wife her engagement ring. Mattie always found that story very entertaining. As you can see, Maya and this other child sitting at the table had their eyes glued to the purple box on the table where the ring was going to be hidden! 


Quote of the day: I think we all know our outer lives are only as good as our inner lives. ~ Pico Ayer


Peter and I spent the day doing a great deal of final edits to our Foundation's new website. Our hope is to be able to launch it very soon. We created our original website for the Foundation almost six years ago, and because the site is impossible to use, I do not know how to maintain it and keep it current. Therefore the site is antiquated and in many ways seems almost counter productive to having a site. 

Our new website will give supporters and people who are unfamiliar with our work a chance to truly understand who we are and what we are about. It will also be easier to get access to information and archival information about us. Of course that is our hope, when it is launched, I am sure we will get feedback from our users. 

In the midst of working throughout the day, we heard a large crash in Mattie's room.  For 13 years, this beautiful mother duck and duckling Avon plate has been hanging on the wall. It commemorated in a way Mattie's birth and our connection with one another. Before Mattie was born, we had a duck themed baby shower, Mattie had duck themed blankets and clothes as a baby, and he really grew up loving ducks. He would always point out a mother duck and her ducklings to me. Because ducks meant so much to Mattie, they became rather symbolic to me. When this plate broke today, it was very disheartening and seemed almost a symbol of our shattered lives without Mattie, especially at this time year when Mattie's diagnosis day fast approaches. Needless to say I kept all of the pieces from this plate, because my goal is to glue it back together again.  

Friday, July 17, 2015

Friday, July 17, 2015

Tonight's picture was taken in July of 2009. Mattie was outside on our deck and in his favorite place.... his sandbox. Mattie loved building in the sand and bringing all his toys from inside into the box. He could be very creative with them! Notice the piece of wood incorporated into the box. Mattie loved wood pieces, because he used them as ramps for his hotwheel cars! To this day, when you open up the sandbox, you can still find pieces of wood inside. 


Quote of the day: Blessed are those who give without remembering and take without forgetting. ~ Elizabeth Bibesco

In March, we attended the Institute of Medicine's Comprehensive Cancer Care for Children and Their Families workshop in Washington, DC. At this conference I gave a talk that highlighted a parent perspective of having a child diagnosed with cancer and the impact it had on our lives and why we developed the Foundation. The purpose of the workshop was to bring the top leaders in the Country together to discuss the topic of palliative and psychosocial care and how to comprehensively treat children. Medicines today may prolong lives but in many cases it is the quality of the child's life that comes into question once the treatment ends. Children are left with many long term side effects, some of which can even include secondary cancers. Which is why palliative care (providing patients with relief from the symptoms and stress of a serious illness--not to be confused with hospice or end of life care!!!) and psychosocial care are so crucial, because both help children and their families manage and cope with the day to day stresses associated with the complexities of surviving the treatment. Of course surviving the initial treatment doesn't mean one is cured. Children can relapse, develop other forms of cancer, and of course when this happens this sets everyone in the family for a tailspin. 

In fact, I remember one of Mattie's doctors telling me early on to remove the word cure, from my vocabulary. Because there is no such thing as a cure. Instead she suggested I replace the word cure with "no evidence of disease." Meaning it wasn't measurable or detectable in scans. I think she is quite right. Once cancer has invaded your world, the threat and fear of it always is there. Which is why I feel it is as much a psychological disease as it is a physical one. 

The jacket cover you see above came out today. The actual publication will be released in September in time for national childhood cancer awareness month. However, this book is now being advertised on the National Academies Press website http://www.nap.edu/catalog/21754/comprehensive-cancer-care-for-children-and-their-families-summary-of. If you look closely, you can see Mattie and Peter featured on the cover! We gave the Institute several photos of Mattie and photos of us with Mattie. They selected this one for the cover. There maybe others they included inside the publication. The story behind this photo however was that it was taken on Peter's birthday. Mattie made Peter a cake out of model magic. So the cake you see in the photograph was designed by Mattie. This cake sits on our bureau in our bedroom even today. It is very special to us to know that in such an important publication written by the Institute of Medicine, that Mattie will be featured and memorialized. Also knowing that this publication is coming out in September, during National childhood cancer awareness month and the month Mattie died in is noteworthy. 

Thursday, July 16, 2015

Thursday, July 16, 2015

Tonight's picture was taken in July of 2009. Literally a month before we found out that Mattie's cancer was terminal. As you can see Mattie was pictured with the Lego model of the Taj Mahal. Which he built with Peter! This took them days to put together, but it kept them very busy, focused, and working together. Which was a wonderful project to have at our disposal because otherwise Mattie would get very restless, depressed, and of course trying to manage and cope with all of his pain and symptoms was at times too much to bear. 


Quote of the day: Cluster headache is probably the worst pain that humans experience. I know that is quite a strong remark to make, but if you ask a cluster headache patient if they've had a worse experience, they will universally say they haven't......women with cluster headaches will tell you that an attack is worse than giving birth. ~ from the Cluster Headache Support Group Facebook Page

For the past two months I have been struggling with a headache. Which is nothing new in a way, since I am a daily headache sufferer. I have been dealing with daily headaches since 2002, after I gave birth to Mattie. I have gone through different neurologists in the process. So I have been at this for years. After Mattie died, I switched neurologists, and my current one, though I feel he lacks personality, seems to understand my condition. He ruled out in the beginning the usual suspects like tumors and other problems, and once that was dealt with, then obviously he had to understand what was going on. In my case that is hard since I have daily headaches and migraines and it is isn't easy for me to determine when a migraine is coming on, since I always have a headache.

Yet for the past two months, the feeling and pain has been different. It has been much more intense and much more debilitating than usual. If that is even possible. I did not think that could be, but I reached an all time low. When you feel so ill, day after day, where you can't focus, concentrate, or spend much time out and about, you can land up feeling very depressed. Wondering whether you will ever feel stable again. This isn't an issue I have talked about because most people do not understand what I am talking about when I say I have a headache in general, or a daily headache, and now one that is unbelievably debilitating. For the average person you can take Tylenol or aspirin and feel better. Those things don't do anything for me! Believe me I have tried that years ago, and I learned that you can become addicted to Tylenol, which provides a whole other problem on top of the headache. It compounds the headache!

When I contacted my neurologist today to update him on my situation, he suggested using a bridge therapy for my already in place preventative treatment. I have heard him using the term "cluster headache" with me before, but honestly that meant nothing to me. To me I had chronic daily headaches and migraines. But today, I actually looked up cluster headaches, and I see, indeed he is correct, I do have cluster headaches and I am in the .05% of headache sufferers. I know there is one thing about both Mattie and I, we never do anything that is typical. Now the question becomes how to treat this nightmare because this headache has been nicknamed the "suicide headache" and I feel this is a very applicable name. The pain is horrific, as if your head could explode and your eyes pop out of your head. They say these headaches come in cycles which can last from weeks to months. I am clearly dealing with months, and they are common in the spring and fall. For those of you are interested, more information is below. 
----------------------------------------------------------------------------

A Guide for the Cluster Headache Sufferer

So you've been diagnosed with Cluster Headaches, the "worst pain known to humans." Now what? Well one thing that you'll quickly find out is that there is no silver bullet for alleviating the pain of cluster headaches. In fact, in many cases it takes so long to come to a diagnosis that you may have already been through several drug trials with your physician or neurologist in order to rule out other maladies. This is not at all surprising because cluster headaches are a primary headache type. In order to diagnose a primary headache type, your doctor must first rule out secondary headache types, including headaches caused by trauma, lesion, or tumor. This is for your safety, but it can certainly be frustrating going through the various diagnostics with no real pain relief.

The average time to diagnosis is actually several years. This is largely because the much of the general medical community has never encountered cluster headaches and knows little about them. It is a very rare illness, somewhere between .03% and .05% of the population. For this reason, and to ensure proper treatment, it is important to go to the right doctor. Your general practitioner or family doctor may hazard a guess that you have cluster headaches, but by and large, they do not see enough patients with this particular disorder to know enough about it to prescribe the right treatment. A good indicator that you are on the wrong path is treatment of cluster headache with painkillers - aspirin, ibuprofen, naproxen, Vicodin, hydrochodone, Oxycontin, morphine, etc. These medicines have their place, but generally do not work very well for cluster headache and they set the stage for prescription medication dependency. Cluster headache is a life-long ailment for most and there is no known cure. It may come and go over time, but typically will return at some point. You need to get on the path of preventing versus numbing the pain.

General neurologists may be more likely to have studied about cluster headaches, however many have never seen a case. A neurologist headache specialist, on the other hand, has a focused practice on evaluating and treating headache sufferers and will undoubtedly have more experience and education related specifically to cluster headaches. Consider also that choosing the right doctor for your headaches is likely a long-term decision, and a long-term relationship. Side up with a good doctor partner that you like and trust to help guide you through it.

Triggers

For many cluster headache sufferers, there are specific foods, substances, or conditions that can trigger an attack. Typically these are consistent for an individual but are not necessarily the same for all CH sufferers. Some common triggers are:

• Alcohol of any type while in cycle. Red wine and hoppy beers tend to be immediate triggers for many.
• Processed food preservatives, especially monosodium glutamate (MSG) and nitrates used to preserve meats. MSG is most noted in Chinese food, but is also used in many soups and other canned foods. Nitrates are used fairly heavily in bacon, sausage, ham and many luncheon meats. It is possible to find these meats with no nitrates.
• Carbon monoxide or petroleum fumes. These can trigger strong attacks.
• Significant physical exertion, although for many this is a good way to relax and does not introduce an attack.
• Inhaling smoke. Although many cluster headache sufferers are smokers, inhaling indirect smoke can be a trigger.
• It may take a while to determine your specific triggers but over time you will learn what to avoid. If you know it's your trigger but you decide to use it anyway, well, you know the risk.

There are three types of treatment for cluster headaches:

• Abortives are acute treatment for the immediate relief of cluster headache attacks
• Preventatives, or prophylaxis treatment, intended to prevent the occurrence or reduce the severity of attacks
• Bridging therapies that are a type of immediate but short-term preventative while longer term preventatives are titrated to full dose

http://www.theatlantic.com/health/archive/2013/11/cluster-headaches-the-worst-possible-pain/281524/

Wednesday, July 15, 2015

Wednesday, July 15, 2015

Tonight's picture was taken in July of 2007. As you can see we had a lot going on, on our deck. We had Patches, our cat sitting on top of Mattie's sand box. We had a large inflatable pool taking up half the deck, and on the table if you notice carefully are two special wine goblets. These goblets belongs to my paternal grandparents. They were used during their wedding to make a celebratory toast. After that point, my grandparents used them on special occasions, such as anniversaries. After they died, my uncle gave Peter and I these goblets. Since we had them out on the table, I know this meant we were toasting our anniversary, and Mattie came to give me a big hug for the occasion! 


Quote of the day: Being deeply loved by someone gives you strength, while loving someone deeply gives you courage. ~ Lao Tzu

Today Peter and I celebrated our 20th Wedding Anniversary. Peter posted the following photos on his facebook page and many people have commented and shared their thoughts with us throughout the day. 

Yesterday, I pulled out our wedding album. I haven't done this in at least a decade. I then reached for my camera and snapped photos of the photos, since this was before the age of electronic photographs.  

What you probably can't tell here is that on July 15, 1995, the weather was INCREDIBLY hot and humid. The temperatures were over 100 degrees. How Peter and I managed in a tuxedo and wedding dress, is beyond me. But it is the beauty of youth and excitement. 

A photo with my parents! 

A photo with Peter's parents!

Peter with our bridesmaids. From left to right are Jen, Karen (my maid of honor), Colleen, and Christina. 

Karen and I met in 6th grade and we are lifetime friends. Christina and I met in college, and Jen, Colleen, and I met in graduate school in Boston. 

Karen sent me a photo of our wedding favor (the rose tea cup) and our rehearsal dinner favor (the wedding bell) today! Like me, she is a sentimentalist! 

Though I haven't been a big fan of Facebook, I have learned to appreciate connecting with people directly this way. I had delightful instant messenger chats with several people today, one being my cousin who lives in Connecticut. She went to Italy recently and visited with family. She sent me several photos today in honor of our anniversary. One was this wedding
photo of my paternal grandparents. They too were married on July 15th! If they were alive today, they would have celebrated their 81st anniversary. 

Tuesday, July 14, 2015

Tuesday, July 14, 2015 -- Mattie died 305 week ago today. 

Tonight's picture was taken in July of 2009. Mattie was in the physical therapy clinic working with Anna and Brandon (Mattie's big buddy). Brandon came to join us because he understood that Mattie needed a lot of encouragement and support to participate in therapy. In fact, when Brandon was inpatient battling cancer, he would try to assist Mattie too whenever he felt up to it. To me this photo captures friendship. It reminds me a bit of an oreo cookie, and Mattie was the filling inside and his friends were the cookie, supporting him from both sides..... truly trying to motivate him to walk despite the fact they knew it was painful and how much he feared falling. 

Quote of the day: A cardinal is a representative of a loved one who has passed. When you see one, it means they are visiting you. They usually show up when you most need them or miss them. They also make an appearance during times of celebration as well as despair to let you know they will always be with you. ~ Unknown Author

Though I did not take this stunning photo of this cardinal today, this is in essence what I saw through Mattie's window today. Staring at me while I was working on the computer. I literally was typing away and then all of a sudden a bird flew in and perched on the window sill. It was a cardinal in all his glory. 

I remember first hearing the legend of the cardinal from Tricia, Mattie's favorite HEM/ONC nurse. Tricia told me that when I see a cardinal, it is like getting a visit from Mattie. That it is nature's way of letting me know that he is always with me. Recently Jey, Mattie's CT tech transporter at the Hospital also told me about the beauty of birds and how their singing each day is something that so many of us take for granted yet, each morning no matter what the weather brings, the birds are out their chirping away. These birds are a constant and in a way he told me he likes to think of them as keeping the memories of all of our loved ones alive. They are singing about each one of them. I loved that visual, and since I love feeding the birds, we are guaranteed to have very lively bird chatter in our complex throughout the year. I have to say before we started feeding the

birds with our feeders, the only thing the city attracted was pigeons and squirrels. Now we have all sorts of birds here such as cardinals, blue jays, grackles, red headed finches (pictured on the left), gold finches (pictured on the right), sparrows, and we even saw a cat bird on Saturday. On occasion we even have hummingbirds stopping by on our hummingbird feeders. Needless to say, we I see all these glorious sights, I can't help but pause and think of Mattie. I am not sure prior to Mattie getting cancer and dying, I would have even paused and given nature so much time and attention. But nature helps me feel connected to my son.  

Monday, July 13, 2015

Monday, July 13, 2015

Tonight's picture was taken in July of 2009. Mattie was in the physical therapy clinic and working with Anna. Though it may seem like Mattie was actually walking, you should know that taking even a couple of steps for Mattie took a herculean effort of strength. Mattie couldn't straighten his right leg, it was constantly bent at the knee from pain and because both of his arms were operated on to remove bone tumors, this did not give him much upper body strength to help to support his lower body. Which was why trying to physically rehabilitate was close to impossible, not to mention his multiple set backs from chemotherapy. Yet despite the set backs, Anna kept Mattie motivated and always gave Peter and I accurate information and advice, which I truly valued and appreciated.  


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. ~ Johann Wolfgang von Goethe

Mattie's art therapist, Jenny, who I consider a friend of mine, sent me a NY Times article entitled, The New Child Abuse Panic. Within the article it talks about how a new radical charge filed by doctors and hospitals against parents has erupted and its title is "medical child abuse." Doctors and hospitals claim that such parents get unnecessary or excessive treatment for their kids. Although most of these cases have nothing to do with real child abuse, credulous child welfare officials have too often supported the doctors, threatened parents with loss of custody, and even removed kids from their homes, simply because the parents disagreed with the doctor’s plan of care.

The article goes on to describe the warning signs of medical child abuse which are: “highly attentive parent” who is “unusually reluctant to leave his/her child’s side”; a parent who “demands second and third opinions”; a parent who “is not relieved or reassured when presented with negative test results and resists having the child discharged from the hospital”; and a parent who has “unusually detailed medical knowledge.” 

Of course the problem with this whole label is that any parent who is caring for a child with a special need, a child with a rare medical issue, or a child with a life threatening illness such as cancer is naturally going to have all the qualities listed above. One thing the medical system trains parents to be is hyper-vigilant and assertive, because if you aren't your child will fall through the cracks and the coordination of care will also be questionable. Parents and caregivers serve invaluable roles and therefore one has to be attentive and when physically possible by the child's side. Seeking multiple opinions is also necessary and unfortunately in certain circumstances I would say that negative test results do not always mean much. It could mean that the wrong test was performed or more testing needs to be done, as was the case with Mattie. A parent's instincts and listening to insights of parents are crucial. Parents know the behaviors, temperaments, and overall nature of their children. When even the slightest thing is off, it will be a parent who can pin point it, and doctors need to listen to this and embrace parents as part of the treatment team for medicine to be truly effective. 

I will give you an example which I think illustrates all of this, of course I have many in my Mattie memory databank. But I think this one truly captures the problem. I do think at times several health care professionals at the Hospital thought I spent TOO MUCH TIME with Mattie. I think they thought I fit most if not all of the descriptors of "medical child abuse." In one instance, I even had a PICU nurse separate me from Mattie, because she thought she knew what was in Mattie's best interest and she felt that it was me who was causing his tantrums and pain medicine seeking behavior. Thankfully this was resolved with the help of a reality lesson and the advocacy of our SUPER HEM/ONC nurse, Tricia, who educated this PICU nurse and a doctor on the loving relationship Mattie and I had with each other. The fact that I had to even endure this was ludicrous and it is amazing that under such intense stress, there was such an accusatory atmosphere Peter and I were living under. These are things I will never forget. 

But that is not the example I wanted to share. The example I had in mind has to do with Mattie's condition a year into treatment. By that point, Mattie had finished all his surgeries and completed his chemotherapy. In all intensive purposes, we should have been working on rehabilitation of Mattie's limbs, since technically he was thought to have no evidence of disease. However, Mattie kept complaining of pain and he refused to eat or drink ANYTHING. Not a drop! When we confronted his doctors on this, the thinking at first was that it was a side effect of the chemo. As time wore on, then the thinking changed to the fact that Mattie was selecting not to eat or drink to purposefully be manipulative and to control the situation and me. As to say, he was developing an eating disorder. Keep in mind Mattie was seven! This honestly did not sit well with me, considering too that Mattie was also in intense pain. To placate me they tested him for ulcers, since they were sure that was the explanation for his not eating (which it clearly wasn't!!), then after a month of this nonsense, I couldn't take it any longer! I demanded that Mattie be scanned. The doctors did not want to scan Mattie, because they really believed six weeks off of chemo, Mattie couldn't possibly have cancer! Well guess what? Not only did he have cancer, he had cancer everywhere, which explained the pain!

I remember friends coming to visit me when we were in the hospital. These were friends not familiar with a health care system, nor what it was like living in a PICU 24 by 7. When they observed me interacting with some of the medical staff and getting upset and angered at times, my friends would pull me aside and almost counsel me as to why I was getting this upset and recommending that I perhaps use a different strategy. In fact, even now as a Foundation leader, I come across health care professionals who also advise me and others on this same calm and collective approach that my friends tried to suggest to me that particular day in the hospital. Perhaps that approach works for some parents, but from my experience working with Mattie and even for my own medical issues, being calm and quiet does not get attention or the job done in our health care industry. Being an advocate at times means having to speak up, making people uncomfortable, and doing what is in a patient's best interest to get the best possible care and outcome. If that is your objective and goal, then eventually others will get on board. 

The New Child Abuse Panic:
http://mobile.nytimes.com/2015/07/12/opinion/sunday/the-new-child-abuse-panic.html?referrer&_r=1

Sunday, July 12, 2015

Sunday, July 12, 2015


Tonight's picture was taken in June of 2009. Mattie created this Sponge Bob out of clay and as you can see, he decided to take a photo and pretend that Sponge Bob was his face. After Mattie died, we kept this clay Sponge Bob on display in Mattie's bedroom until the whole thing disintegrated. 









Quote of the day: Music expresses that which cannot be put into words
and that which cannot remain silent. ~ Victor Hugo 

Peter and I went to see a Broadway musical today at the Kennedy Center entitled, Once. Once is a classic,"Guy-meets-Girl story." It is a Tony-winning Broadway show in which a heartbroken Irish Guy (yes the main character's name is really GUY) meets a Czech Girl (and yes her name in the story line is really "girl") in a pub. Guy, a singer-songwriter, has decided to abandon his music because his songs remind him too much of an ex-girlfriend. As he and "Girl" warily get closer to each other, Guy finds that the music that once hurt can now help him heal.

I have to admit this is like NO Broadway show I have ever seen. First of which, before the show starts, the audience is invited up on stage to interact with the cast. The scenery is a pub, and all the cast are serving drinks to audience members (of course you have to purchase them). But it is a very interesting idea, in which you get to be up on stage, see their vantage point, interact with the cast before the show and at intermission, and before the show starts the cast actually entertains the audience by playing musical instruments on the stage for you.

That is part one of the difference. The second big difference from any other Broadway show I have seen is there is NO orchestra. There is no orchestra because EVERY cast member on stage plays an instrument. Most play multiple instruments and VERY well. This is a multi-talented cast that can play instruments, sing, and dance. Almost unheard of in a way. There is no conductor and how all these actors/musicians know how to time one another and keep each other on cue is really quite remarkable. 

As for the story line, I must admit it left me perplexed. The Washington Post's review claims this show was uplifting. I never read a review before going to a show because I do not like to be biased by it. But I really wonder about the Post. Which is not atypical for me, I usually do not agree with the Post's review and this is another case in point. 

Once is emotional, deep, and in a way heartbreaking. It is about unrequited love. It doesn't produce the happy ending we all wish for..... with love winning in the end. It isn't a Disney plot here, so the word UPLIFTING and HOPEFUL are truly not words I would be using here. Though I realize this was the intention of the composer of the musical, so clearly something did not resonate with me, like it did with countless others who saw this musical. With that said, I do think the musical is worth seeing for the sheer talent of what it took to perform this play and because it does address emotional content that we as human beings can all relate to..... great pain, sadness, and not knowing how to cope and manage such intense feelings. This musical illustrates that with the help of just one person our lives can be altered and helped through a crisis, such a ONCE in a lifetime connection will never be forgotten. It changes the trajectory of our life for the better. 


Trailer for Once:
http://www.kennedy-center.org/explorer/videos/?id=A84463

Review of Once:
http://www.washingtonpost.com/entertainment/theater_dance/once-again-bares-the-soul-of-a-dublin-busker-this-time-on-stage/2015/07/09/4c184842-2663-11e5-b72c-2b7d516e1e0e_story.html