Saturday, January 16, 2016

Saturday, January 16, 2016

Tonight's picture was taken on January 13, 2009. We took Mattie on a Hudson River cruise and he literally saw the Statue of Liberty and all the wonderful sights of NYC. While on the boat, a stranger came up to us and asked if we wanted to have our photo taken. Which I thought was very nice at the time. Looking back, I am so glad he did because I love having this memory preserved on camera! 



Quote of the day: Bereavement is a darkness impenetrable to the imagination of the unbereaved. ~ Iris Murdoch


Peter and I did all sorts of chores today, one of which was grocery shopping. Given that it was a grey day out, I decided that we should buy several large chicken breasts, and I would cook all of them, not only for dinner but to have the leftovers for lunches next week. So I spent a good portion of the day in the kitchen cooking things like balsamic chicken and chicken stew. 

Of course grocery shopping with Peter is very different than grocery shopping with Mattie. The food store we went to today, was the same one I used to shop at with Mattie. Mattie truly disliked shopping. Shopping of any kind! Well except shopping for Legos and toy cars! That was the only exception. Yet as a family, we clearly needed food and to eat, so that meant Mattie had to come grocery shopping with me. I noticed today that our grocery store has changed dramatically since I used to go with Mattie. When I went with Mattie, there was practically something to catch a child's eye hanging in each aisle. From toys to rubber balls, you name it. I couldn't get down an aisle without Mattie telling me he absolutely needed whatever was hanging in the aisle. Naturally the first couple of times I was ill prepared to deal with his requests, but by the third time shopping together, I had developed a strategy so that we did not come home with things he did not need. 

Perhaps it is because Mattie is no longer shopping with me, that I DO NOT notice the toys or gadgets geared to children hanging in the aisles any more. That could be, but I do think that stores have now made a conscious effort not to market to children in each aisle. Or worse at the entrance of the store, where there used to be machines in which Mattie could put in a quarter and get out a toy. These machines have vanished. It certainly makes it a lot easier for parents to grocery shop with their children. 

With all that said, the question does become.... have the stores changed or is it me who has changed? Not being a parent anymore, I no longer look for items that could very well be right in front of me. I am conscious of this question now, and will be looking with a different viewpoint the next time I go back to that particular store. I want to know if the store changed or whether it is just me. What I do recall however, was once Mattie died, going back to the grocery store was awkward and felt odd. Odd because I was used to shopping for the needs of a child. I would say for the first full year after Mattie died, part of me glanced at all the things he used to like, and I wondered whether I should buy them. There was a very cognitive disconnect, because I had been shopping for a child for 7 years. But with time, this changes. I am not sure that this means I accept the loss, as much as it means I have adjusted to the change. Yet whenever I pass things Mattie loved to eat, like yogurt or golden oreos, I can't help but think how different our shopping experience is now. 

Friday, January 15, 2016

Friday, January 15, 2016

Tonight's picture was taken on January 12, 2009. Mattie was sitting in a bed at Memorial Sloan Kettering in NYC. He was there to start his first infusion of an immunotherapy drug for Osteosarcoma. The condition of using this experimental drug was it had to be started at Sloan Kettering. This was a day I will never forget nor will I forget Sloan Kettering. A hospital that I wish NEVER to say again! Ever. It is as large as a factory and the type of care and attention you get are equal to that of being on an assembly line. I had it out with everyone there, including the main researcher of the clinical trial. He conveniently failed to tell us the extensive blood draws and other testing Mattie would have to undergo before his medication infusion. An infusion in which they did not want to use his broviac catheter but to insert an IV in his arm. I went ballistic and took Mattie off the study but still demanded the medication. In addition to that fiasco they felt that they had to x-ray Mattie's chest to make sure his broviac catheter was inserted correctly. Mind you this catheter was inserted at Georgetown Hospital and it was how he had been receiving his chemo, blood draws, and all other medications for the last five months. I even had Mattie's scans with us to show Sloan Kettering that the catheter was fully functional. But forget it, they insisted on taking their own x-rays. If that wasn't bad enough they did not prepare us for the nasty reaction Mattie was going to have to the immunotherapy infusion. Right after the infusion they sent us back to the hotel. It was in the hotel that this frightening scene unfolded --- high fevers, Mattie was shaking like a leaf and also seemed listless --- and when I called their after hours number, they were LESS than helpful! However, what we learned was Mattie needed Demerol (a narcotic for pain) after almost every immunotherapy infusion. 



Quote of the day: The weird, weird thing about devastating loss is that life actually goes on. When you’re faced with a tragedy, a loss so huge that you have no idea how you can live through it, somehow, the world keeps turning, the seconds keep ticking. ~ James Patterson


Patterson's quote tonight is so true! While you may be personally dealing with grief and loss and your world is collapsing all around you, the rest of the world seems to be just fine. It is spinning, functioning, and business as usual. It is a feeling that is hard to describe, yet if you have experienced loss, trauma, or something else that is life altering you know exactly what I am talking about. I would have to say that this realization is the first true encounter a bereaved person has with reality... and the reality is that there is me and everyone else. Unfortunately to add to this, I would say that this feeling (especially with a traumatic loss) can last forever. 

I am signing off for tonight. I spent a lot of time working at the computer today, but as always no day is complete for me without sharing a Mattie memory of the blog. 

Thursday, January 14, 2016

Thursday, January 14, 2016

Tonight's picture was taken in January of 2009. Mattie was home between treatments and received several gifts from friends. You can see two of them: the military patches that he put on his pajamas as well as a wand from the Dairy Godmother (which is a homemade custard store in Alexandria, VA)! Receiving gifts were a God sent during Mattie's 15 month battle. Mainly because each day became harder, since Mattie became further isolated and in pain. Also after a while, I could get boring (since Mattie had me around him 24/7), along with all the other objects around us. Yet a gift typically provided new stimulation and diverted Mattie's attention for a little while.  


Quote of the day: When a friend of Abigail and John Adams was killed at Bunker Hill, Abigail’s response was to write a letter to her husband and include these words, My bursting heart must find vent at my pen. ~ David McCullough


After 6 years of seeing the same neurologist, today I ventured to see a different doctor for her opinion on my chronic migraines. I have not had a headache free day since the day Mattie was born. I truly believe that after my epidural, I developed a headache that has never gone away. Certainly the degree of pain varies from day to day and for the most part since I have dealt with this for the past 14 years, I have learned to work through pain, to function, and not complain. Yet that doesn't mean I don't deal with chronic pain, which is fatiguing. I have tried all sorts of medications over the 14 years and the last one I tried had terrible side effects and I landed up with kidney stones ... stones that developed and were passed every three months for a year. So my joke is I rather deal with the headaches than deal with the side effects of the medication. 

Obtaining an appointment for today was also hysterical. Do you want to know when I made this appointment? TRY JUNE! June of 2015, for a January 2016 appointment. The doctor's assistant told me that people travel from other States to see this doctor! Well with that build up, she set me up to believe this doctor was something special!

Do you ever have the feeling as soon as you meet someone, that you are not going to like your interaction with them? Well this is the feeling I had after immediately meeting this doctor! We are really losing something in our health care industry, if you can't have a direct conversation with the doctor! What I mean by this is they are too busy documenting what you are saying. Most of the time you are talking to the back of a computer screen, rather than a person! The doctor is talking and as you are responding, yet instead of the doctor engaging you and making HUMAN contact, the doctor is writing notes into an electronic medical system. I am a very person centered individual, therefore this to me is already a turn off! 

Putting that aside, she took a history of my of 14 years of headaches and within the conversation naturally came my dialogue about Mattie. My headaches happened in labor and a good part of my intensive treatment began after Mattie died. Yet despite the doctor hearing about Mattie multiple times in our meeting, she did not bat an eye lash or even say she was sorry to hear about my loss. 

It is true I am NOT seeing this doctor for her warmth and compassion, but nonetheless, it tells me a great deal about her personality and that she can't or won't connect with her patients on an emotional level. When dealing with chronic headache pain, I think it is crucial that a doctor be able to understand pain. Pain of ALL kinds. I did not feel like she understood my loss of Mattie, nor did she have the foggiest notion or compassion for having daily pain for 14 years. 

It is important to have a good fit between a doctor and a patient, and without it, the doctor misses the many nuisances expressed by a patient. Which to me are crucial with regard to adhering to treatment. So I left the office today with many suggestions, a battery of tests to do, but feeling like she wasn't invested in helping me. So why someone would travel four hours to see her is a mystery!!!

After leaving her office, I was waiting by the elevator bank to get to the parking garage. While waiting, I noticed a mom and her teenage son by her side. They were talking and at first I simply observed them, so as time went on, I said to myself...... if Mattie were alive he would be about this fellow's age. It then put this mother-son pair in a whole new light for me. I was happy they were together and joking around with each other, and yet at the same time saddened once again for my own loss. 

Wednesday, January 13, 2016

Wednesday, January 13, 2016


Tonight's picture was taken in January of 2009. Mattie was home between treatments and despite being wiped out (as you can see in his expression), he still found a way to be humorous and creative. With a Styrofoam box, he transformed it into something that looked like a bicycle helmet using his favorite..... TAPE. Mattie was a wiz with tape and glue!  Of course through his shirt you can see the tubes from his broviac (a catheter that came through his chest and was connected to a major vein to the heart) hanging loose, which was a constant reminder and symbol that Mattie had cancer. 



Quote of the day: Losing people you love affects you. It is buried inside of you and becomes this big, deep hole of ache. It doesn’t magically go away, even when you stop officially mourning. ~ Carrie Jones

I found an email from Springer, the publishing company, in my email inbox today. They wanted me to know that the chapter we wrote entitled, "Parents’ Perspective on the Role of Psychosocial Care in Pediatric Oncology" in the textbook ---Pediatric Psychosocial Oncology: Textbook for Multidisciplinary Care--- has been released.

Peter and I are honored to have been invited to contribute a chapter to this outstanding psychosocial resource! This textbook details the psychosocial issues and challenges faced by children and adolescents with cancer and their families. Through a developmental lens, the book provides guidance and resources that will enable clinicians to understand the physical and emotional impact of the disease from diagnosis onwards, to work with families in distress, and to diagnose and treat a range of behavioral, psychological, and psychiatric issues.

Each chapter is written by leaders in the psycho-oncology field and what is so special is we had the opportunity to meet and work with several of these professionals through our National Psychosocial Standards project. 

To see more about the textbook and each of the chapter in the book, go to:

http://link.springer.com/book/10.1007%2F978-3-319-21374-3

Tuesday, January 12, 2016

Tuesday, January 12, 2016 -- Mattie died 330 weeks ago today.

Tonight's picture was taken on January 7, 2009. Mattie was home between treatments and that evening we received a visit from JJ, our resident Jack Russell. JJ and Mattie practically grew up together, as JJ was a puppy when Mattie was a toddler. JJ really tried to understand what was wrong with Mattie and when Mattie died, JJ pined for Mattie. He wouldn't eat for a week and stuck close to a sandal of Mattie's. This sandal remained by JJ's bed at home for months. Patches, our cat, went through a similar mourning period. She had different behaviors than JJ, but you could tell she was impacted. She also spent many hours each day on Mattie's bed, something she hadn't done when Mattie was alive. 

Quote of the day: It’s easier to miss her at a cemetery, where she’s never been anything but dead, than to miss her at all the places where she was alive. ~ John Scalzi

I had a conversation with a friend today about relationships. Particularly friendships between women. Well l should qualify, friendships that you establish during a crisis like an illness. It is one thing to develop a friendship naturally, over time, over common interests, work, and so forth. But what happens when you form a bond with someone while joining forces to caregive for a loved one? A different kind of connection develops. One that is hard to describe unless you have found yourself in a similar circumstance. When caring for someone who is ill, this intense environment impacts the depth of friendships formed while caregiving. After all in our every day lives we typically are not dealing with communications that involve whether to give a medication, the potential side effects from medication, how the treatment may impact one's quality of life, or worse whether the medication will produce a reaction leading to death. Some may think such conversations are reserved for medical staff, but that is NOT the case when you are caregiving for someone who is ill. Caregivers are very much a part of all medical conversations, decisions, and of course the consequences of treatment and decisions. 

Yet when you have a person around you who shares in these caregiving decisions, who listens and supports you every step of the way when most people are too afraid to face these harsh realities, it produces a connection which I suppose is friendship. Or is it? Friends who help one another care for someone in sickness and in death, develop a loving bond with one another that to me is much deeper than a friendship. When someone stays up with you through the night to care for a loved one, who worries about you and your welfare, and faces painful physical and emotional medical sights with you... that person becomes an integral part of your life journey. 

So what happens to such a friendship after the loved one you are caring for together dies? Well that is what my friend and I talked about today. This is not a friend who went through Mattie's battle with me, but instead a person who also was a caregiver to a loved one who recently died. As she was talking to me today, she expressed the feelings I am describing here, and I immediately understood them all too well without much prompting from her. After a death, one of the biggest fears we have is those around us who we were closest to us during the battle will disappear from our lives. Or that our friendships with them will change and if they change how can we go on? Can we handle that loss too? This may sound silly or even trite, but actually this fear or abandonment is very real and also very painful if it actually happens. The connection with our friends who caregave with us help to keep our loved one's memory alive. The fear of losing these friendships in a way symbolizes losing our loved one all over again. Not that our friends can replace the person who died, but they do provide a level of comfort. They shared an intimate part of our lives with us and we let them in to help us, therefore, emotionally we expect these friends to always be there. 

Yet what if that doesn't happen? After all what bonded you with your friend was the role of caregiving. This becomes a challenging journey in its own right because either you have to learn to develop the friendship without your loved one present, or you have to learn to appreciate that the bond isn't going to be the same and will change because you are no longer operating at the intense caregiving level you once were. I am sure some of you are reading this and saying...... what on earth is she talking about? Whereas others of you who have experienced the special bond over caring for a dying loved one get me immediately. Needless to say, these struggles with friendships are something that I have had to face after Mattie died and when my friend brought this topic up today I felt..... WOW, I am not alone. Someone else out there is experiencing these same thoughts and fears. 

Monday, January 11, 2016

Monday, January 11, 2016

Tonight's picture was taken on January 13, 2009. Mattie was in NYC and staying at the Affinia Gardens Hotel, right near Memorial Sloan Kettering. That week Mattie was going to start his experimental treatment at the hospital. When we checked into the hospital we had this express mail box awaiting our arrival. The box was a care package to Mattie from Linda, his child life specialist at Georgetown University Hospital. The box was filled with all the things Mattie loved to play with from Legos to magical wands. As you can see Mattie was smiling or should I say beaming that Linda remembered him in this way. 


Quote of the day: Never worry about numbers. Help one person at a time, and always start with the person nearest you. ~Mother Teresa


I received an email from a friend of mine asking whether it would be okay if she connected me with a friend of hers. Her friend's son, who is only 6 years old, was recently diagnosed with osteosarcoma. The same type of cancer Mattie had. I am always happy to talk with any parent who is dealing with a childhood cancer diagnosis. 

I am not really sure how the world thinks parents should react to the news that their child has cancer! For the most part people are looking for us to break down, cry intensely, and basically be full of emotion. For some this very well may happen. But for others of us, you will see nothing. No expression, no tears, no melting in a puddle, or any other volatile image you would like to conjure up. Instead, we are simply in shock and in shock we do not have room for all the emotions. I honestly think to some extent that shock and numbness are healthy coping mechanisms. Because when in this state, what kicks in is the ability to mobilize forces, to think rationally, and to make difficult and tough decisions. Thankfully... because after your child is diagnosed you are flooded or should I say bombarded with information and the need to make QUICK decisions. This doesn't lend itself too well to curling up in a ball and weeping uncontrollably. 

Now one would think that only people who have no experience with childhood cancer would have these feelings and myths about what is the appropriate way to react to hearing the news.... "your child has cancer." Unfortunately I experienced the same level of cluelessness from the social work staff. One professional in particular I will never forget, and probably never will. She evoked intense feelings of anger within me, and disappointment for not having the sensitivity to understand what my family was facing. 

During Mattie's first week in the hospital receiving chemotherapy, a social worker came up to me and basically in no uncertain terms told me she wasn't happy with the way I was reacting to Mattie's diagnosis. She felt I was expressionless and emotionless and also needed time away from the pediatric unit and Mattie to care for myself. Keep in mind this was Mattie's first week of chemotherapy, and I did not know the hospital, the people working there, or how Mattie was going to react to the drugs. Not only did this social worker judge me, she had the audacity to remove me from the pediatric floor altogether and checked me into the hotel on campus. Mind you all the while I said I did not want to leave Mattie's side, nor did I want a hotel room. Needless to say, after the social worker left me side, I returned the hotel key (never to go back!), and immediately called the chief of pediatric oncology and reported this social worker. I wanted an apology from the social workers for her behavior and told the doctor that she knew nothing about me or my relationship with Mattie. If the social worker did then she would have known that even when Mattie was healthy I never left him alone, so certainly battling cancer it wasn't going to happen. 

It is very natural for us to judge and even express our opinions about how a parent is behaving or not behaving during a childhood cancer battle. But I guess my feelings on this is..... unless you have lived this process, and have your own insights, I would be very cautious about doling out advice and commentaries. Chances are when we allow parents to be and act the way that they need to, eventually we will learn about their feelings and emotions. Such expressions need to happen on the parent's timeline, NOT a mental health providers! My one piece of advice that I shared with this mom whose child was just diagnosed is this.... there is NO right or wrong way to emotionally manage and handle a childhood cancer diagnosis (and the entire cancer journey for that matter) and anyone who says differently simply doesn't get it. 

Sunday, January 10, 2016

Sunday, January 10, 2016

On January 14, 2009, we took Mattie to the top of the Empire State Building! This was a first for Mattie and he found the whole experience intriguing. There were NO crowds that day in the building, which made it super pleasant. We did not wait in line for an elevator and we freely and easily could go from one observation deck to another. Mattie was in NYC to start his experimental immunotherapy treatment at Memorial Sloan Kettering. Before the process started we took Mattie around the city for a tour. 


Quote of the day:  Waiting is painful. Forgetting is painful. But not knowing which to do is the worse kind of suffering. ~ Paulo Coelho

We are trying to adjust to being home, but both of us are very tired. While we were away Peter's office moved out of DC and into Northern Virginia. Today, we ventured to his new office do some unpacking and to set up Peter's space before tomorrow hits him and he gets swamped at work. This is a photo of Peter's old office, the one we packed up in December. I believe a before and after photo is crucial because of the stark contrast between spaces! 

This is Peter's new desk. Gone is the traditional office with walls, privacy, and your own space to work in. This work space is what is popular.... the open concept. I like this concept in a home, but not in a work space. To me this space looks like a newsroom, with rows and rows of decks and people typing away trying to capture the latest and greatest news sensation.

Fortunately Peter worked in an environment like this when he did consulting, but if I had to work here, NOTHING would get done. The noise and distractions would do me in.

Peter's old office space had shelves and places to display things. There is NO SUCH area now. So literally I started decorating the windowsill. To me, this was needed to break up the stark white walls and environment. It was like walking into a hospital room.... that antiseptic look, which is okay in the short term but if you have to spend any length of time in such a setting, you do want to transform it into your own. But I am stunned with what the 21st century office looks like and also the lack of decorating on walls and on decks today. They are identity free! You can't tell one person's deck from another, there is no personality or character inserted into one's space anymore. That is the norm, but it seems less than normal to me. You should note that all the trinkets around Peter's work space are things he collected on business trips. So to me they are very work related, but yet capture Peter's interests and character. 

This is the view Peter has from his office desk. Get the picture of the open concept? So open that exposed ceiling beams and things is the look!

I can't wait to hear how Peter reacts to his first day of work in this new space. For me it would be a massive adjustment, but for Peter it most likely will be stimulating and exciting.