Saturday, March 10, 2012

Saturday, March 10, 2012

Tonight's picture was taken in October of 2002. Mattie was five months old and in this picture he was featured in one of his favorite things... tot wheels. Mattie loved when I took his walker outside into our commons area. He literally would race up and down in the space and cover as much territory as possible. Mind you he couldn't crawl (something he never did!) or naturally walk yet, but tot wheels gave him independence and he loved the freedom to move on his own! You can't see Mattie's face straight on here but his jacket and hat were designed to make him look like a cute puppy! The hat had a black nose on it and floppy ears. I loved this jacket and hat on Mattie and I remember it as if it were yesterday!

Quote of the day: The best things in life are nearest: Breath in your nostrils, light in your eyes, flowers at your feet, duties at your hand, the path of right just before you. Then do not grasp at the stars, but do life's plain, common work as it comes, certain that daily duties and daily bread are the sweetest things in life. ~ Robert Louis Stevenson


The funny part about Stevenson's quote is you don't realize how special the ORDINARY and daily tasks are until you are unable to do them. Peter and I found this out the hard way. Being a parent is a challenging occupation, it is a 24 by 7 proposition, that leaves little to no time to be an adult or to even remember who you are on some days. This afternoon, Peter and I met a family for lunch. This family lost their oldest of two children to brain cancer last year. At lunch, they brought their son with them, who is three. Seeing this little fellow in action reminded me of Mattie. None of what this little guy was doing today surprised me from his energy level to his desire to play with cars, trains, and planes! I may not be raising a child now, but I remember those "daily duties" and "common work." However, there is something very uncommon and special in common work, and yet we take it for granted while doing it. As I observed this child eating today, I realized how our dining experiences now are just so different. They are quiet, at times lonely (because we know what we are missing), and in many ways it is as if we lost the child rearing years, and are now empty nesters. Except our nest is permanently empty and there is no Mattie to even call and check in with.

During lunch I realized that we had a lot in common with this couple. Certainly the cornerstone being that we both lost a child to cancer, and in the process we also experienced other losses. We lost some of our friends. Even close friends. It has been an interesting life lesson, sometimes your closest friends just can't be there for you during the battle, or perhaps those you went through the battle with and you thought would be there for you always, no longer are. We talked about how the battle may just wear friendships out and particularly now that our children are gone, friends do not know how to talk with us. So the worst happens, things aren't discussed and instead distance ensues between relationships. It is a complex dynamic, but a dynamic that indeed happens. Losing a close friend who you thought would always be there for you in a way provides its own form of devastation, especially when you feel you have lost so much already.

When we got home from lunch, again I went into cleaning out mode. This massive cleaning out process began last February and March, and then I gave up. That is until this February. Today I tackled our linen closet and my desk. However, what I have determined is the more I clean out, the more I feel needs to be done. It is a vicious cycle.

Friday, March 9, 2012

Friday, March 9, 2012

Tonight's picture was taken in October of 2002. Mattie was five months old and featured in another item which he greatly disliked, his stroller. In fact, Mattie went through about four strollers, until we found one he tolerated. His facial expression says it all... "I'm not happy! Get me out of this stroller now!!!"


Quote of day: You cannot teach a man anything, you can only help him to find it for himself. ~ Galileo Galilei


I had another bad night of sleep. However, as the morning rolled around, my attitude had improved and I wasn't focused upon my medical issues. I had a productive three hour licensure board meeting, but when I got home, I got a call from one of my doctor's offices telling me that the mass was still there and was the same size. Certainly the same size is better than the mass growing, but I had hoped that perhaps it would shrink or disappear. Not realistic I know, but I had hoped for this, so I could put this behind me. Frankly living with not knowing what is going on inside of me is very challenging. I am simply stunned that there is no effective way to biopsy this mass and my choices are multiple scans per year or a radical surgery.

Needless to say, for the rest of the day, I lost my appetite and by the time Peter came home from work, I was in a complete funk. So I am signing off for tonight in hopes that tomorrow is a better day.

Thursday, March 8, 2012

Thursday, March 8, 2012

Tonight's picture was taken in October of 2002. Mattie was five months old and had teeth in his mouth which were quite painful. Peter snapped a priceless picture of Mattie looking up at him as he was inspecting his teeth!



Quote of the day: The great man is he who does not lose his child's heart. ~ Mencius


I spent the majority of today driving around with Peter from one doctor or hospital to another. In some ways, just the physical notion of having to see a doctor and visit a hospital can make you feel VERY sick! The atmosphere is a self fulling prophesy in a way.

This morning we drove to Chevy Chase, MD, where we met with a one of a kind doctor. Kristen, Mattie's oncologist and our friend, recommended I see Dr. Marlow. Dr. Marlow was recommended to me because he is a leading gynecological educator and surgeon in this country and is considered to be a pioneer of numerous technologies to advance women's health such as laparoscopy, hysteroscopy, colposcopy, and laser surgery. Besides being gifted as a physician, the other immediate thing that comes to a patient's attention is his warmth, attention to detail, compassion, and thoroughness. We spent two hours with Dr. Marlow today. First we talked for an hour! What about?! A novel concept.... he took a thorough history of me and my family. It was like working with Sherlock Holmes as he was digging through each symptom and procedure I have ever had in my entire life to try to make sense of my current picture. He warned me that he isn't a doctor who looks only at one body part, he needs to understand the whole picture! Where did he come from??? I told him today I wanted to adopt him and I wished every medical doctor was so thorough and worked hard at putting the many pieces of my puzzle together.

While waiting to see Dr. Marlow, I looked around his office and noticed there was art everywhere. But not just art, it was art he created! I noticed his attention to detail and the beauty in his drawings. His drawings immediately indicated to me that he is very talented with his hands! I loved his office staff as well, and they normalized my fears and shared pictures of their dogs with me. Visiting Dr. Marlow's office is not your typical doctor experience and I credit a great deal to the fact that he does not take health insurance. A patient has to pay out of pocket, and then submit paperwork for reimbursement from your health insurer. What this glaringly shows me is that when doctors aren't regulated by insurance companies, they have the freedom to be in a way better doctors. Doctors who can spend the time listening to patients and getting a more accurate picture of the problem. By the time I left today, I felt as if I was NOT alone in this problem. That he wanted to work with us in a supportive way to figure out a solution to my issue. Before jumping the gun with procedures, he feels it is important to get all my medical records in order. He wants as much data as possible.

So after my appointment we went to Virginia Hospital Center, where I requested all my surgical and treatment reports. Dr. Marlow feels that my c-section delivery of Mattie may have triggered a whole host of events for my body and bladder. As he reminded me today, we don't want to throw a howitzer (a big piece of artillery) at an unknown problem. Meaning, he is not for major invasive surgery on me without further evidence and data. Mind you he also confirmed that I made the right decision not to have the biopsy last week. A procedure by the way that he helped to create! So when the creator is telling me, it wouldn't have worked, then I know it wouldn't have worked!!!!

Later in the afternoon, I headed to Georgetown University Hospital. Keep in mind to prepare for my MRI, I couldn't eat or drink for the majority of the day. When we arrived at the MRI area, Linda (Mattie's childlife specialist) was awaiting us. I swear I need Linda as much as Mattie did. I have been through a lot with Linda, and frankly in many ways she is like our family. It meant a lot that she was there for both of us. As I headed back into the MRI area, I recognized my MRI tech. That is because Tony did many of Mattie's MRIs. We recognized each other immediately. When I went to change in the MRI area, right next to my clothes locker was a penny heads up. A sign from Mattie. I grabbed that penny and put it in my purse. The irony is this penny was right in the middle of the floor, and people passed it by and never bent down to pick it up. As if it was meant for me and no one else could touch it. While waiting in a hospital gown to go into the MRI room, I just felt Mattie's presence in the whole space. In fact, if you leave me too long unattended in the MRI area, I will start to cry. It is an emotionally laden area for me. To top it off, I was assigned the same MRI room as Mattie today. I recall that room SO well! Typically MRI days for Mattie were very stressful and his MRI's were usually two hours long!

After the MRI, Peter took me out to dinner and I ate for about three people. Peter was stunned at what he was watching! This evening, I got a call from Dr. Aziza Shad, the head of pediatric oncology at Georgetown. She and Kristen have been just incredible with me. Aziza shared some news about the MRI, and told me that the experts will be reading it tomorrow. These women are NOT my doctors (they were Mattie's), and I am not their responsibility. Yet this is what makes them exceptional physicians. Medicine is not about numbers to them, it is about personal connections and helping people. Such a rarity in today's world, that from my perspective when you find physicians like this, you have to CALL IT OUT! Okay, WRITE IT OUT, but you get my point!!!

Wednesday, March 7, 2012

Wednesday, March 7, 2012

Tonight's picture was taken in October of 2002. Mattie was six months old and graduated to a high chair. By that point he no longer fit in his car seat (which was his desired place to eat)! In this photo, Mattie was featured with yams all over his face! His favorite things to eat back then were yams, butternut squash, peas, and baby oatmeal! In fact, Mattie loved oatmeal SO much that everyday of his healthy life he ate a bowl of oatmeal for breakfast. This was what he wanted and requested and whenever we travelled with us always came packets of instant oatmeal!


Quote of the day: Hope has two beautiful daughters - their names are anger and courage; anger at the way things are, and courage to see that they do not remain the way they are. ~ St. Augustine

I love St. Augustine's quote and I relate to it very much, because since Mattie's death I would say that I do carry two "beautiful daughters" around with me wherever I go. Some days anger is more prevalent and other days courage supersedes. Lately however, as I try to figure out my own health circumstances, anger, fear, and sadness can take over.

I worked rather intensely for hours this morning, barely moving from the computer. As some of my faithful readers may remember, I was connected last week with Dr. Jimmie Holland. Jimmie is a psychiatrist at Memorial Sloan-Kettering and is considered the mother of psycho-oncology. I reached back out to Jimmie and not only is she attending our Symposium, but will now be speaking at it as well. It is a wonderful honor to have such a pioneer in the field coming to our event.

The of rest the afternoon I spent visiting with Celina. Celina is my hairstylist, and her husband and her sister also work in her salon. Over the years, I have gotten to know Celina's family. I met Celina before Mattie was born! Celina and her husband not only run a successful salon in DC, but they are very generous and charitable individuals. On March 31, they are holding a reception at their salon to raise money for the Mattie Miracle Cancer Foundation. I will be sending out details soon, but if my readers want to attend, the event will run from 7-10pm. Celina's husband, Eugenio, told me today that his intention is to host this fundraiser every year for us. It is hard to know what to say to this incredible gesture, but this is a couple that deeply wants to help people and give back to their community. Needless to say, when I visit the salon, it is a very positive experience for me because in a way it is like having a complete change of venue for two hours. In fact when Celina cuts my hair, I literally close my eyes and try to tune everything out around me. Something that I really need to do.

Tomorrow is another full day. In the morning, I see yet another doctor to consult with him about the possibility of a biopsy and then in the afternoon, I will be back at Georgetown University Hospital for a follow up MRI. As always I appreciate all your good thoughts!

Tuesday, March 6, 2012

Tuesday, March 6, 2012 -- Mattie died 130 weeks ago today.

Tonight's picture was taken in September of 2002. Mattie was five months old and featured in one of his favorite toys.... tot wheels! Mattie loved this walker. He wanted to walk from a very early age, and he despised crawling and never did it. He loved the independence and control he had over using tot wheels. In the spring, we would take Mattie outside with tot wheels, and he would literally tear around up and down our common space. It was through Mattie that I met most of our neighbors. He was our unifying force, a force that no longer exists.

Quote of the day: Everything has beauty, but not everyone sees it. ~ Confucius


Tonight I am beyond exhausted, so this will be a very short posting. I went to see my urologist this morning. She is one of the specialists I see on a regular basis. She is the doctor who prescribed me the ct scan on February 1, which of course revealed my mass and has caused havoc in my life for over a month now. We discussed my current situation and she immediately flagged the fact that she did not like the way I physically looked. She could tell I haven't been sleeping and looked very tired and fatigued. But what she kept harping on was my weight. I did not really register what she was saying until she practically threw me on the scale and showed me I lost five pounds in about three weeks. Mind you I am not on a diet, and due to seeing non-stop doctors, I haven't been exercising regularly either. But being stressed out, I lose my appetite. Very reminiscent of when Mattie was diagnosed with cancer. Somehow the doctor seemed stunned by my psychological reaction to being diagnosed with a mass that CAN'T be biopsied! Which is where medical professionals and mental health professionals differ greatly. Because from my perspective all my symptoms are very understandable given the stress I have been living under and I would guess most mental health professionals would agree with my assessment. Why medical doctors have the trouble of connecting the mind and body together perplexes me to NO end! We discussed other aspects of my health as well, and by the time I left her office, she had a tear in her eye, and I also just felt lost, very emotional, and with no outlet at all to turn to. From a medical standpoint, this doctor has worked with me since 2009. She understands on some level the horror I lived through with Mattie and the fact that I lost my only child to cancer. I think the fact that I am now dealing with a mass which we can't tell what it is, is not only overwhelming to me, but it is to her as well. It is a mass that impacts my quality of life to some extent and also tests my persistence, determination, and overall hope. As she said to me today, sometimes life doesn't bring you what you want, and my natural response is.... who do you think you are telling this to? I know all too well that life is not fair, it can be cruel, painful, and hopeless because I have seen we control very little of what happens to us.

After this hour long visit, I later headed over to Ann's house to visit with her aunt who is in town visiting Mary (Ann's mom). Though I had little to give today, I did commit to seeing Mary's sister today, and one thing that is true about me is if I promise something, I try very hard to deliver on that promise. I met Mary's sister several times before and like Mary, I relate to her sister as well. We chatted for a long time today, and at one point she said to me that some things in life I just have to give up on because focusing upon them serves no purpose. She is wise enough to deduce that I am a sensitive person and as such take everything in and sometimes get upset over things or with people in my life. Though she wasn't giving me advice, she was talking about changes she made in her life, but as she was talking, her changes resonated with me. I could respect why she made these changes and the benefits of shutting out certain hurtful things and people. Some times one has to do this for self preservation purposes and  because focusing on how we want people to be or behave can only lead to further frustration and hurt. No matter how hard we try, we can't change people, we can't make them feel a particular way about us, and we can't always expect people to treat us the way we treat them. So it was a very insightful visit in a way. Needless to say, I am signing off for the evening, and as always I appreciate you stopping by and staying connected.

Monday, March 5, 2012

Monday, March 5, 2012

Tonight's picture was taken in September of 2002. Mattie was five months old and in love with rice cereal. Even at five months, sitting in a high chair did not interest him. He eventually migrated to a high chair, when he literally couldn't fit any longer in his beloved carseat! What I love about this picture was the way Mattie was staring at me. He was transfixed, and actually even as he got older, he always seemed to have one eye on me if I were in the room with him.


Quote of the day: The optimist sees the rose and not its thorns; the pessimist stares at the thorns, oblivious to the rose. ~ Kahlil Gibran

As tonight's quote points out, we have the choice to be an optimist or a pessimist. I do think as individuals we tend to lean toward one or the other of these outlooks. For myself, when it comes to viewing other people and understanding their behaviors and feelings, I tend to be an optimist. However, I am not as gracious with myself, instead inwardly I tend to be more pessimistic. 

I had the wonderful opportunity today to be taken out to lunch by Bonnie. Bonnie is the executive director of the DC counseling licensure board, the board I chair, and have chaired for more years than I care to admit. Bonnie has known me as a doctoral student, then a new mom, and then as a mom who was losing her son to cancer. Bonnie introduced me to a wonderful restaurant in DC, and as we sat in this cozy french bistro, I felt almost as if I was being transported to Paris thanks to the food, the decor, and the music. Bonnie and I have fiery personalities and we both call things as we see them. A quality I appreciate and admire in a friend and colleague. I had a lovely time away from what I normally would be doing during the day and am grateful to Bonnie for her support of our Foundation's Symposium. When I realized I wanted to get continuing education units for professionals to attend the Foundation's Symposium on March 20, I reached out to Bonnie to find out the process I needed to follow to apply. Bonnie let me know today that the DC Nursing Licensure board just approved our Symposium's content for continuing education credits! So I am thrilled, now nurses, licensed professional counselors, social workers, and psychologists can all attend and get continuing educational credit for their time and participation.

After lunch, I headed to my third acupuncture appointment. I told the therapist that I have developed terrible stomach pains over the last two days. Not mild pain, but intense. Last night I was doubled over in pain. She feels this could be a sign that the therapy is beginning to work. Keep in mind that she is not only treating my headaches, but the pain from my bladder and mass issue as well. So she does stick needles into my abdomen each week. I am definitely getting used to the pain when the needles enter my body, and the beauty of acupuncture is it forces me to close my eyes and relax for an hour without moving. My body has forgotten how to relax, and I believe living in a PICU and dealing with Mattie's cancer and death has left me in a state of being hyper alert! After awhile living in this prolonged stressful state, things start breaking down. So in a way, acupuncture is therapeutic for me because it forces me to slow down and get in touch with how I am feeling. The therapist asked me today if after my last two treatments I noticed a change in how I felt emotionally. Specifically she asked me if I felt more "joy" in my life. My response to her was that the word joy is not something I am comfortable with in general. I am not sure if other parents who have lost a child feel this way, but the notion of feeling happiness and joy provokes intense guilt in me. Perhaps we would call this survivor guilt from a clinical perspective, but from a mom perspective it just doesn't seem right that the rest of us go on, and Mattie doesn't.

I would like to end tonight's posting with a message I received today from my mom. She entitled it.... How can you not love Kristen? The answer is you CAN'T!

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How Can You Not Love Kristen?

Virginia R. Sardi

Vicki, you love Kristen and I love Kristen too!  Anyone who reads your blog would know how important Kristen was to Mattie at Georgetown University Hospital during his long hospital stays helping him through the ups and downs of his relentless battle against the insidious form of cancer that was to take his life. She explored every avenue of research that applied to his condition in a great compassionate effort to prolong his life, if not save it, for she always knew the odds were not in his favor.  In watching her do her rounds in the PICU, I observed that she never lost sight of what was important.  That a human drama was unfolding in the confines of every room that she visited was never lost on her. She assessed the situation and behaved accordingly taking into account the emotional trauma of cancer on the pediatric patients and their parents. Mattie was a strong willed child who determined for himself how tolerant he would be of invasive medical practices that infringed on his privacy and took over his space, even though he was only six years old.  Kristen was sensitive to his moods. She could be serious when called for and be “down to earth” when Mattie had a good day and sought her participation in the fun and games that he so much loved to orchestrate with the hospital staff. She knew he controlled the dynamics of what went on his room and “game on” was a priority when he was not sick. So, she could laugh at his jokes, even manage a smile when the joke held a rebellious edge to it, play along with whatever he deemed was the agenda of the day, and try to explain the med stuff that was going on in an age appropriate way in a patient and non-threatening way, even when he was at his challenging best.  Many doctors stick to the charts, analyze the statistics and make a medical pronouncement without any human interaction.  Kristen knows that children have feelings which produce emotional reactions to disease and treatments. For this reason, I believe that Kristen is a great doctor who parents can trust and who can be counted upon to put their interests ahead of medical protocol or mere hospital politics.  I love Kristen too because she stayed connected to you after Mattie died.  I love her for writing to you every Tuesday in remembrance of Mattie! Not to be overlooked, I also love Kristen for helping you make contact with doctors with the potential to resolve your medical issues of the moment.  It is always comforting in my mind to know that Kristen is on the case!!!

Sunday, March 4, 2012

Sunday, March 4, 2012

Tonight's picture was taken in September of 2002. Mattie was five months old and sitting on his floor mat. Mattie disliked tummy time and therefore I never put him in this position for long. Ironically as I look at his mat, I notice it was in the shape of a butterfly and hanging from it were stars and a sun. Rather fitting symbols that remind me of Mattie even today.


Quote of the day: You can't be brave if you've only had wonderful things happen to you. ~ Mary Tyler Moore

It seems that our weekends are as equally as busy as our weekdays. I am working hard on making the final push to get everything set for the Foundation's Symposium and Peter has been absolutely instrumental this weekend. He is my technology guru and if something can be done on the computer, then rest assured Peter will figure out how to do it. Peter helped me with a whole list of things and I imagine he is observing my stress level and looking for ways to take things off my plate. Which I appreciate! When our congressional co-sponsors of the Symposium arranged for us to have the event in the Capitol Hill Visitor Center on March 20th, they booked us a room that could hold 70 people maximum. I do not have the RSVP list for the congressional folks attending yet, but from the community alone, I have close to 50 people registered. Which tells me that there is a need for the type of venue we have been planning and I do think people want to delve into the cutting edge psychosocial research so they can advocate more effectively within their place of employment and for their own childhood cancer organizations. I am proud to say that amongst our Symposium attendees we have 11 states represented including: California, Delaware, Maryland, Massachusetts, Michigan, New Jersey, New York, North Carolina, Pennsylvania, Virginia, and Washington, DC. 

I have another busy week coming up with meetings and doctors appointments. Quite a combination. As the week wears on, I do find that my headache gets worse. I am noticing however, that initially after acupuncture my head feels slightly better for a day or so. I am hoping this is a trend and not just coincidence. But unfortunately so far the relief is short lived. Tomorrow afternoon, I have my third treatment and as I tell the therapist, she has her work cut out for her.