Saturday, January 27, 2018

Saturday, January 27, 2018

Tonight's picture was taken in March of 2003. Mattie was 11 months old and I can imagine you need some context to understand Peter's facial expression here. First of all, this was Mattie's first trip to visit my parents in Los Angeles. For the first couple of days of the visit, Mattie got up at 4am, thinking the day should be starting. We tried everything to get him to go back to sleep and adjust to LA time, but forget it. So for three days, we were up at 4am! Mattie was raring to go and Peter and I were like the walking wounded. Peter was trying to mimic Mattie's hand gestures in this photo and then added this crocked expression to signify that we were up before even the birds!


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


There are many things I remember from the time Mattie was diagnosed with cancer. But one that remains in the forefront of my mind has to do with becoming disengaged. When you first get diagnosed, people really have every good intention to support you. Until the process gets underway and the visual reality of what treatment can do to a person is just a bit too much for the average soul. Who can blame anyone? After all seeing someone so sick, especially a child, could make any of us run the other way. It isn't pleasant to observe, it makes no sense, and worse it causes us to question..... this could happen to me? So instead of dealing with all of this, it is safer to disengage and remove one's self from the scene of the cancer crime. There are many forms of disengagement though that happen when diagnosed with cancer. 

Disengagement can also happen with the patient and the family caregivers. In Mattie's case, as he received more chemo, had extensive surgeries and got sicker over time, he wanted very little to do with anyone. Other than Peter and me. He had no problem shutting people out, ignoring them, or covering his ears. I must admit as Mattie was disengaging, I too wanted to block people out. I really did not want to hear their stories of normality and I found outside visitors who came to drop things off very difficult to manage. Many of them had no common sense, and would sit in Mattie's room, trying to talk to me for hours. Meanwhile, I was simply trying to hold it together and keep Mattie calm. When I look back at it now, I don't know how I did not explode at people because hearing about things at school, another child's troubles or accomplishments was just too much. TOO MUCH!!! When you get to this point of disengagement you truly don't care about the person in front of you. It isn't intentional, it is more about self preservation and one's sanity. Therefore, though disengagement may seem harsh (or though I doubt most people knew I was disengaging from them), it is a necessary coping mechanism to survive a life or death situation. 

Since Mattie died, I have helped friends who have been gravely ill. Let's just put it this way, I am on the second hand of digit counting of friends who have died. However, when I found out this week that my friend was diagnosed with cancer, I feel like I have regressed right back to when Mattie had cancer. Meaning my lens sees two different types of people in the world. Those touched by cancer and those who live in Disneyworld (which is what I call people unaffected by cancer). It is hard not to look at the world as them versus us! I find this week that I have LITTLE tolerance for people all around me complaining about everyday problems or worse problems which I assess were brought about by bad personal decisions and choices. There are big differences between problems you brought on yourself and those that just happened to you by accident or disease. 

Of course being a mental health professional by training, having this judgmental attitude about qualifying stressors or problems is not ethically right! If I were working with clients now, I truly would need to step back. I think part of me knew this when Mattie died, which is why I never returned to teaching undergraduate and graduate students. My mind and heart were no longer there. Instead, I chose to remain living in the cancer world, by doing Mattie Miracle work. It is a world that I understand better, I get the fears, stresses, desperation and the life and death decisions that are constantly being made. 

I would say there are moments when I may appear to the average person engaged with the "normal" world, but I also know it doesn't take much to pull me out of my comfort zone. When I am out of my comfort zone, I am quite capable of giving a friend or two a lecture about the reality of what a real problem is! So when I sense that I want to take my hostility and aggression out on healthy people, I disengage! With this introspection, and I left wondering if this is also why Mattie disengaged from the world?

Friday, January 26, 2018

Friday, January 26, 2018

Tonight's picture was taken in March of 2005. Mattie was almost three years old! What were Peter and Mattie doing in this photo? Being a cockroach of course!!!! Mattie had a fascination with bugs. Particularly roaches. I think he loved my whole reaction to the mere mention of a bug, which was why he told everyone he loved bugs!!! I can't tell you how many nurses he tried to scare in the hospital with all of his plastic bugs. He was a total character. 


Quote of the day: It's always something, to know you've done the most you could. But, don't leave off hoping, or it's of no use doing anything. Hope, hope to the last! ~ Charles Dickens


This week I learned that a close friend of mine has stage IV ovarian cancer. What does stage IV mean? Well cancers are typically diagnosed in stages, which signals how aggressive the disease is and staging helps to direct treatment. If you want specifics about how cancers are staged, I included some information from ASCO's website. 

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Doctors commonly use the American Joint Committee on Cancer’s (AJCC’s) TNM system to describe a cancer’s stage. Doctors use the results from tests and scans to answer these questions:

• How large is the primary tumor? Where is it located? (Tumor, T)

• Has the tumor spread to the lymph nodes? If so, where and how many? (Node, N)

• Has the cancer spread to other parts of the body? If so, where and how much? (Metastasis, M)

Listed below are the general descriptions of the TNM staging system. However, each type of cancer has a separate TNM system. Learn more specific staging information for each type of cancer.

Tumor (T). The letter "T" plus a number (0 to 4) describes the size and location of the tumor, including how much the tumor has grown into nearby tissues. A larger tumor or one that has grown more deeply into the surrounding tissue receives a higher number. For some types of cancer, lowercase letters, such as “a,” “b,” or "m" (for multiple), are added to the “T” stage category to provide more detail.

Node (N). The letter "N" plus a number (0 to 3) describes whether cancer has been found in the lymph nodes. It may also describe how many of the lymph nodes contain cancer. Lymph nodes are tiny, bean-shaped organs that help fight infection. Regional lymph nodes are located closest to where the cancer began. Distant lymph nodes are located in other parts of the body. Most often, the more lymph nodes with cancer, the larger the number assigned. However, for some tumors, the location of the lymph nodes with cancer may determine the “N” stage category.

Metastasis (M). The letter "M" indicates whether the cancer has metastasized, or spread, to other parts of the body. If the cancer has not spread, it is labeled M0. If the cancer has spread, it is considered M1.

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Naturally I am not happy that my friend is dealing with cancer. But I knew she needed a second opinion. Fortunately I know one of the top gyn-oncologists in our area. Shortly after Mattie died, I had my own cancer scare which I dealt with for two years straight. Thanks to the help of Dr. Abbie Fields, my problem was resolved and like she suspected I did not have cancer. However, another hospital evaluated a CT scan of mine and in the report wrote possible cervical adenoma malignum. So once it goes it writing, it has to be followed up on. To this day, I would love to meet this radiologist who made this diagnosis on paper. He caused great havoc in my life for years. Even today, I still have that fear in the back of my mind. 

Abbie is the chief of gyn-oncology at Sinai Hospital in Baltimore. Going to Baltimore is not around the corner, it actually is a trek, as it is a 90 minute drive each way. But worth the visit! When I came home today, I wrote an email to the CEO and President of the Hospital (which you will find below). I have gotten the chance to meet both of these men, as Mattie Miracle is in the process of creating a child life program fund at Sinai. 

At the end of the visit today, Dr. Fields told my friend......be a roach! Sounds awful, but if you think about it, roaches are hardy insects, and can tolerate a wide range of environments from Arctic cold to tropical heat!

This brought a smile to my friend's face, because it is humorous! So now she is hash tagging... #bearoach! 

This photo captures the roach Mattie painted on a ceiling tile in the Hospital's outpatient clinic. This painting was up for a couple of weeks and then disappeared. Most likely because it scared families. I am still upset that the hospital did not give me this tile to keep. Nonetheless, Mattie would have loved Dr. Field's motto for today... be a roach! So I sent this photo to my friend to remind her of the hope that the doctor instilled in all of us today. 


NOTE TO SINAI HOSPITAL:


Dear Neil and Jonathan,

I wanted to share my positive experience today at Sinai Hospital. I realize patients, families, and donors may contact you only when there is a problem. In my case, I like to communicate both the positives and the negatives. 

As you know my October 30th meeting with X., Y., and Z. (I removed the names for this blog posting), did not go well. I left your institution very disillusioned. Given that Mattie (my son) was treated for Osteosarcoma at a major cancer center in the Washington, DC area and we lived in a hospital for over a year, I have come to understand the workings of medical institutions very well. Maybe not from an administrator's standpoint, but from the lens of the consumer. In addition, my experience running a cancer non-profit for 8 years, allows me the insight to know that administrators, physicians, and patients are not always on the same page. Which is why Peter and I pulled funding from the last institution we supported. It was a very hard decision, which is why I am overly cautious about the next institution I choose to support. 

I am glad we will have the opportunity to meet Jonathan on February 26. Because I was concerned about what I was hearing in the October meeting. I hope to learn more about the administration’s perspective on patient care and to me this means much more than just the medicine. Quality medical care is not simply the value or cost of providing care, but instead must consider how the care is delivered, the empowerment of the patient, and addressing and meeting the psychosocial needs of the patient and the family. Only when medical and psychosocial care are well integrated can the quality of life of the patient increase. As we know enhancing quality of life has been found to positively impact treatment outcomes. Physicians are crucial to helping meet the psychosocial needs of their patients and families, and I look forward to hearing how Sinai empowers the physician to provide such integrated care. I heard enough in the October meeting to pause and question whether the administration values this at Sinai. 

Which leads me to today. As you know Aziza Shad helped Mattie at the end of his life and was the physician on call the day he died. I think the true testament of a physician is watching her operate under such dire circumstances. You aren’t going to find a better or more dedicated pediatric oncologist like Aziza, who literally returns text messages instantaneously from all over the world. To this day, if I have a medical problem, and I am an adult, I immediately contact Aziza. I think that speaks volumes. 

However, what you may not know is I also have a long-term relationship with another doctor at your Hospital, Dr. Abbie Fields. Like with Aziza, I started working with Abbie when she was part of the MedStar system. Shortly after Mattie died, I had a cancer scare of my own. I literally consulted with five different gyn-oncologists, at all the major cancer institutions in our area. In my case, there were no clear-cut answers and I literally got five different opinions about what to do. Given that I just lost my son to cancer, I was in an absolute panic and quite sure I was going to die too. I received all sorts of advice from having a full hysterectomy to take the wait and see approach with constant scanning. 

Ultimately, I decided to work with Abbie. Why? Because through our interactions I came to value and trust her opinion. She was able to help me for two years straight and at the end of the day, Abbie’s clinical judgment was correct about my case.  Trust is not something I give away easily especially in the medical profession. However, with each visit and consultation I had with Abbie, I felt like she was in this for the long haul with me and wanted to arm with as much of the facts about my case as possible, so I felt empowered in my own care. Like Aziza, Abbie is also very patient centered and returns calls and emails immediately. That is beyond refreshing in the healthcare industry, and I think it speaks volumes that such fine physicians work at Sinai. They both have a way of making you feel like YOU ARE IMPORTANT, and your case is on the forefront of their minds. Patients want and seek physicians like this! Even if it means driving two hours to come to Sinai. 

I visited Abbie’s office today, not for myself, but for my friend who has been diagnosed with stage IV ovarian cancer. My friend received this diagnosis on Wednesday. When my friend asked me who she should see for a second opinion, it was a no brainer. She had to see Abbie. In fact, I told my friend she couldn’t move forward with chemo, without consulting Abbie first. I literally text messaged Abbie on Wednesday and within minutes she called me and scheduled an appointment to see my friend today. Abbie spent two hours with all of us today, took an in-depth history, answered questions, and took a sincere interest in the life of my friend. Besides Abbie’s competence and stature in her field, she also provides her patients with compassion, humor, and hope. Today’s visit was priceless, because for a moment, I saw my friend release the fear she had about her diagnosis and embrace the process ahead.  This only happened because of she sat before a skilled physician. A physician that values not only the medicine, but the human being sitting before her. 

This is a long-winded message to say thank you for bringing Aziza and Abbie into your Sinai family. As you know most of us in DC, don’t like long commutes to see our physicians. But when you have outstanding physicians like Aziza and Abbie, people will make the trek. As I have learned over the years, what makes a hospital system great is not just providing outstanding medical care, but ultimately what patients and families REMEMBER about the institution is HOW that medical care made us emotionally feel. 

Sincerely,

Vicki

Thursday, January 25, 2018

Thursday, January 25, 2018

Tonight's picture was taken in November of 2002. Mattie was 7 months old, and though he never crawled 
that did not stop him from trying to learn how to walk when only a couple of months old! 

This was one of Mattie's favorite things to do.... standing on his feet and walking with assistance! That day we received this cute zippered sweatshirt in the mail. It came from my mentor at Union College. He wanted Mattie to have something from his parent's alma mater. We snapped this photo and sent it to my immunology professor (Dr. Twitty Styles), who I still keep in contact with and he is also a Foundation supporter.  


Quote of the day: You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do. ~ Eleanor Roosevelt.


Peter sent me a link to an article entitled, Animal-Assisted Therapy For Childhood Cancer Reduces Stress, Improves Communication. Which is right up my alley. Sometimes I wonder what it would have been like for Mattie to have the support of a dog while in the hospital. When Mattie was in treatment, NO DOGS were allowed into the units. That has since changed. When I look at Sunny's demeanor, which is calm and gentle, I can actually picture him visiting children in the hospital. As long as there are no threats of squirrels around, Sunny is basically very compliant, follows direction, and loves attention and  engaging with people. 

I attached the link to the article below, but basically the article discusses a 7 year old clinical trial that took place at five hospital sites around the country. The researchers followed 106 pediatric patients, aged 3 to 17 years, who were newly diagnosed with cancer and undergoing chemotherapy in an outpatient clinic. Sixty children received regular visits from therapy dogs and 46 children received standard treatment (no dogs).

The article mentioned that the animal-assisted therapy program used a variety of dog breeds, ranging in shape and size. The canines were screened to ensure they were able to perform these duties. I love that it was noted that these dogs typically had a calm demeanor about them.  


Children in the treatment group received 20-minute sessions with a therapy dog about once a week for four months, in addition to their standard care. They found that pediatric patients who received animal-assisted therapy remained stable in regards to their disease-related concerns, whereas the control group showed increases in quality of life concerns. Additionally, parents in the treatment group reported that their children had significant improvements in school functioning.

I find it particularly interesting that the results showed an improvement in communication within families and between parents and medical staff. This actually doesn't surprise me. In this study they had dogs, but when Mattie was undergoing treatment we had Legos. I realize these things don't equate with each other, but the point is, I saw how positive Legos were and helped Mattie communicate and relate to his professional caregivers. When a nurse or doctor entered into Mattie's hospital room, his reaction was typically to shut down and hide under the covers. Or literally ask them to leave! But if someone started talking to him about his Lego creations, this would immediately capture his attention and change his whole feeling about the medical visit. I have to imagine that having the assistance and presence of a dog provides this similar sort of distraction and provides an ability for everyone in the room to bond over something NOT cancer! 

Bond over something NOT cancer! Which is similar to our Foundation's tagline.... It's not just about the medicine! There is something to be said about connecting with patients, not as numbers or a task, but over human concerns, commonalities and fears. I really think when health care professionals allow themselves to be human in their caregiving practices, small miracles can happen! 


Animal-Assisted Therapy For Childhood Cancer Reduces Stress, Improves Communication:

https://www.curetoday.com/articles/animalassisted-therapy-for-childhood-cancer-reduces-stress-improves-communication

Wednesday, January 24, 2018

Wednesday, January 24, 2018

Tonight's picture was taken in January of 2003. Mattie was 9 months old and was visiting the US Botanical Gardens. It was a place we all liked to explore. As you can see Mattie was using his favorite mode of transportation.... Peter's back! My mom snapped this cute photo of us. Peter knew the photo was being taken but Mattie and I were oblivious. 


Quote of the day: If the only miracle we are looking for is the big one ... then we will most likely miss the other miracles that are unfolding before our very eyes, each and every day. ~ Deacon Wayne Charlton


Tonight's quote is powerful to me and was written by a hospital chaplain. Initially when Mattie was diagnosed with cancer, the immediate goal and HOPE is for a cure. I have now come to despise this word and whenever someone says they are hoping for a cure, I literally get on my soap box and correct this terminology. As one of Mattie's oncologists told me.... "once you are diagnosed with cancer you are never cured." You may go into remission and have no evidence of disease, but in essence cancer is always part of your life. I would say that is abundantly true, with both long lasting physical and mental side effects. 

Some survivors will say that cancer changed their lives, even for the better. I don't care for that notion because I would hope there are better ways to learn about priorities and life's lessons other than by coping with a life threatening illness. Yet, I would say that undergoing a cancer battle opens your eyes up in ways that may not be possible otherwise. You get a real perspective on your friends, your support community, and also realize most of the stuff we do and fret about on a day to day basis is meaningless. 

When Mattie was in treatment and at the end of his life, there were miracles happening all around us. Not the kind we were hoping for, but I also came to understand that hope changes at every stage of the cancer journey. Toward the end, we clearly weren't hoping for curative care, but instead to have the ability to relieve pain and suffering that Mattie was enduring. It was in these challenging 14 months that I saw the beauty, the courage, and the loyalty of people within our support community. Some of them would literally try to move the earth if it brought Mattie some happiness. For example, when Mattie's support community learned he wanted to ride his bike, but was afraid to because he did not want to fall............ within hours they mobilized and had about four sets of training wheels on our front door step, so that Mattie could confidently ride. 

Or when Mattie's diagnosis became terminal, his support community wanted to do something special for him. They knew Mattie wanted to be a ship captain. So literally people were making calls all over town. Finally they got the Navy to agree to allow Mattie on one of their ships, for a tour, and to take a ride on the ocean. It was amazing. Unfortunately, by that time Mattie emotionally did not want to be around people, he wasn't open to such a new experience, and truly was just trying to keep it together because of the pain. Yet I would say all of these gestures were miracles when you truly think about it and in most cases, these miracles are more powerful THAN THE MEDICINE. 

Sunny update......

Sunny was examined today by our vet. She wasn't pleased to see how much fur was shaved off of Sunny's leg. As you can see Sunny's skin is already red and irritated. In any case, Sunny's foot was bathed in a special solution, dried, and re-bandaged. She now put him on antibiotics and a stronger pain med. She feels that Sunny is definitely in pain. 

Sunny and I will be visiting the vet every two days for the next ten days. Each visit he will get a bandage change and another assessment. But the healing will be slow because he has NO NAIL left. Needless to say he is NOT a happy camper. 

Tuesday, January 23, 2018

Tuesday, January 23, 2018 -- Mattie died 436 weeks ago today.


Tonight's picture was taken in February of 2004. Mattie was almost two years old. I snapped this picture because I thought Mattie was hysterical. He wanted to try my waterproof shoes on and then decided to shuffle around our home in these shoes. All I know is it was never boring with Mattie. 









Quote of the day: Making a donation is the ultimate sign of solidarity. Actions speak louder than words. ~ Ibrahim Hooper

Though Sunny is supposed to be on shortened walks, you can see that he still is VERY eager to look and chase squirrels. Keeping him from running is a feat. Even though he is standing up on his hind legs, the interesting part about all of this is he won't walk on his bandaged leg. So literally he hopped and walked on three legs all day! Tomorrow we see the vet again, and we shall see what happens with the bandage. 








Meanwhile, believe it or not, I spent a good portion of my day updating our website. Specifically the page that lists our corporate sponsors and all our donors. This was a totally laborious process, which is why I don't do it every year. But if you go to the link below, you can see our...........

18 Corporate Sponsors
450 Supporters

All our supporters enable us to make the Mattie Miracles possible!

http://www.mattiemiracle.com/donors

Monday, January 22, 2018

Monday, January 22, 2018


Tonight's picture was taken in February of 2003. Mattie was ten months old and to me he looked like a "little man" here. He was dressed up, ready to go to a birthday party. When I see this photo of Mattie, it is clear that he looked nothing like me at that age. But that changed very quickly. 










Quote of the day: If you don't own a dog, at least one, there is not necessarily anything wrong with you, but there may be something wrong with your life. ~ Roger A. Caras


Sunny went for a walk later on today and when Peter brought Sunny back inside, he noticed his paw was bleeding. So Peter called me onto the scene. We couldn't deduce how Sunny did this, and frankly we don't know enough about dog anatomy to handle this issue on our own. We could see a lot of blood oozing everywhere and we only saw a bloody fleshy tissue hanging from where a nail once was. I quickly called our vet, since it was close to 6pm, and our vet closes at 7pm. Unfortunately our vet had back to back appointment until 7pm and even if she squeezed us in would not be able to do any procedures today. 

So I called Friendship Hospital for Animals in DC. Peter and I are very familiar with this hospital since we had to take Patches there years ago. The beauty of Friendship Hospital for Animals is it is open 24 hours a day, 7 days a week. They have an ER and ICU. We whisked Sunny on over and waited for about 90 minutes to be seen. The wait time is long because it is a popular facility and they triage problems. 

Nonetheless, the vet who saw us was lovely. He is a Boston fan, so he got along swimmingly with Peter. I would say Sunny made a name for himself at the hospital as all the humans who came in contact with him, absolutely loved him. 

So here is a visual lesson on dog nails! Under each nail is something called a QUICK. The quick is a blood vessel and nerve of the nail. If a nail is trimmed to short, near the quick, the nail will bleed. In Sunny's case, the entire exterior part of the nail was ripped off (most likely while running a chasing squirrels) exposing the blood vessel and nerve. It is very painful. 

I guess the equivalent would be like someone ripping one of our nails off and having the skin exposed. 

This isn't Sunny's paw, but you get the idea. This is what the quick looks like when a nail has been ripped off. 

They put Sunny on an absorbent cloth while we waited for Dr. Matheson. I am not sure what Sunny disliked more.... having his foot pain or being at the hospital. Sunny was anxious, pacing in the exam room, and making all sorts of noises. 

Sunny managed through the ordeal, but ranged between unhappy and anxious. 

Sunny is now home. His hind legs were bathed in a special cleansing solution, then his leg was wrapped (very tightly), and was given pain meds. The pain meds are truly helping him, but he is not going to like his reduced walking routine for the next week. 

In case you are curious, it takes about two months for a dog's nail to grow back. Meanwhile Sunny will be bandaged for two days and then we go back to the vet to check the healing process. 

Sunday, January 21, 2018

Sunday, January 21, 2018

Tonight's picture was taken in February of 2003. Mattie was ten months old and was exploring his new toy..... a table which played all sorts of music. I think Mattie's facial expression says it all! He was just not sure why this table was making all this noise. So he was curious and yet cautious! 



Quote of the day: Freedom is what we do with what is done to us. ~ Jean-Paul Sartre

To celebrate my friend Ann's birthday today, myself and another friend went to the Park Hyatt in DC for high tea. To me tea should be a special experience. This is the second high tea I have had in DC (at different locations). Each venue really do host this event quite differently. The Park Hyatt is lovely because it is smoothing, they don't rush you at all, and there is a lot of space between tables. 

Pictured from left to right: Mary, Ann, and Vicki

However, I would say there were aspects of the tea that I did not like. Such as the presentation of the food, the ordinal china, and NO scones and clotted cream. That to me is the beauty of high tea. 

I have noticed now that high tea is served like this... with little warmers that actually do keep your tea hot. That is quite lovely and I experienced a special citrus oolong tea today. Needless to say, it is a special thing to do in the winter time, when you feel like you are climbing the walls doing the same old thing inside. 

There are a handful of places in DC that host high tea, and I have gone to two on the top ten list so far. I feel like I am on my way to writing a guide book on tea in our region.... including 'the must experience' and the 'forget about its!'