Saturday, February 18, 2012

Saturday, February 18, 2012

Tonight's picture was taken in May of 2002. Mattie was a month old and getting some fresh air with me outside on our deck. If you look closely in the background of this picture, you will see Patches. She was also sitting outside with us on a white deck chair. I love the facial expression that Peter captured of Mattie. This was what Mattie looked like after being fed, he was very calm and mellow. That moment was short lived typically, but these were moments I distinctively remember.


Quote of the day: Success is not final, failure is not fatal. It's the courage to continue that counts. ~ Winston Churchill


It's the courage to continue that counts! What a brilliant quote, and though I do not think Churchill had grief in mind when he stated this, I believe it so aptly applies. Since it takes great courage to continue on after losing a child. When you look at the picture above and see a happy and healthy baby, it simply perplexes me how Mattie could then develop Osteosarcoma. When life doesn't bring you what you expect or hope for, disillusionment can easily settle in. Feeling disillusioned and with a lack of hope, can lead to a whole host of other emotions and problems. Which is why reflecting on Churchill's quote is so meaningful to me.

Despite feeling debilitated physically and emotionally, I got myself together today and took a walk with Peter by the Potomac River and then we had lunch out. Sometimes at home I feel so overwhelmed that I am unable to eat, and therefore getting out and in a different environment, enables me to change my mindset, which improves my appetite.

But as this evening settles in, I find that I am contending with a terrible migraine and really can't focus on anything, including writing the blog. So I will stop writing for tonight and hope that tomorrow is a better day.

Friday, February 17, 2012

Friday, February 17, 2012

Tonight's picture was taken in January of 2008. One weekend we took Mattie to Mason Neck State Park to walk around and explore. In typical Mattie fashion, he found himself a stick that he carried with him throughout the park. As some of my faithful readers may recall, Mattie collected a walking stick on all his nature adventures. But Mattie wouldn't toss the stick once the walk was over. OH NO! Instead, he would transport the stick home with us and then add it to his stick collection in our complex's common space.
This stick collection still exists today, though ivy has grown in and amongst the sticks. 


Quote of the day: Kind words can be short and easy to speak, but their echoes are truly endless. ~ Mother Teresa


Today was a doctor and hospital free day. Which was needed because I find those two things can put me in hyper alert mode given the situation. I was planning on spending the day at home working on Foundation things and really had no intention of getting outside.

As the morning progressed I got an email from my friend Tina. She wanted me to know that it was going to be a lovely day, the sun was shining and headed to be in the upper 50's. Too nice of a day not to go outside and walk. So we met to walk in a nature preserve in her area. I had gone once with Ann to this preserve to pick up her children from summer camp, but I really never walked around the grounds or went into the beautiful wooden lodge within the preserve. So today I saw a part of Alexandria I never saw before and got to hear about how this nature preserve was saved from having a road built right through it. Tina was instrumental in this preservation and as we walked I heard the story about the advocacy efforts that took place to save this land. 

So it was walk in which I got to see trees, water, and geese, but it also was a walk in which I learned something about my friend. Sharing stories and learning about what a friend is passionate about are great gifts. Tina introduced me to one of the main educators at the preserve. This teacher uses her skills to bring alive science and nature for children in the local public schools. She was sharing with us stories today from the special education class that visited her classroom just an hour earlier and how they learned about penguins and then got to use modeling clay to illustrate what they learned. Tonight's Mother Teresa quote came to mind as I was hearing this teacher talk. Because this preserve's classroom environment gives many children opportunities they might not get in a typical school setting. Sometimes kids in school get labeled with a particular issue and problem. Yet when they come to the preserve the territory is neutral. Children can learn, explore, and perform hands on educational activities that not only stimulate the mind but also the spirit. It gives them the permission to be true to themselves and their character. It is within this classroom lodge some kids learn they are artists and are appreciated for their ideas and talents! What I reflected upon while hearing this teacher talking was that kind words are indeed short and easy to speak as Mother Teresa indicated, but they can have profound and life altering effects.

Getting outside today and in and amongst the trees and seeing the birds helped to reorient my mood. With Mattie's illness, I perfected the art of compartmentalizing some of my feelings. That may not sound healthy, but it actually is, because if I continued to live in a heightened state of anxiety and stress over my current situation, that would just be toxic for my health. So being able to forget about it even temporarily is therapeutic. Today I took a big first step for myself. I finally made an appointment with an acupuncturist for next week. I am a conventional medicine person, and yet I have learned that modern medicine can't provide a safe and effective relief for my headaches. Many of my friends have recommended I try acupuncture specifically for my headaches, so given all that I am managing right now pain wise I figured I had nothing to lose. A good friend of mine swears by this particular professional, so I look at this upcoming appointment as a ray of hope.

Thursday, February 16, 2012

Thursday, February 16, 2012

Tonight's picture was taken when Mattie was a month old, on May 4, 2002. Peter's family came from Boston to visit with Mattie and that afternoon we all went out for ice cream. On our journey out, Peter's parents bought Mattie this cute bunny. A bunny which I still have. Mattie was fascinated by that bunny and at the time being a naive mom and person, I thought life was challenging with a newborn. The irony is I had no idea how much harder life was going to get. I suppose thank goodness none of us have a crystal ball to rely upon, because if we did, there are some days we just may not get out of bed knowing what lies ahead.


Quote of the day: A good head and good heart are always a formidable combination. ~ Nelson Mandela


It has been non-stop doctors, testing, and stress for the last two weeks. We are living at such a heightened level of tenseness and anxiety that I am back to not sleeping or eating. A feeling I recall all too well when Mattie was ill. I went back to Georgetown today to meet with my oncologist there. As soon as I walked into the Lombardi Clinic there awaiting me was our friend Tim. Tim is a hospital administrator who we have gotten to know quite well since Mattie's death. Tim is a big Mattie Miracle supporter and has become a dear friend of ours. He was sitting in clinic awaiting my arrival because he wanted to lend support and also to let others in the clinic know that he considers us special people. In addition to Tim, Linda (Mattie's childlife specialist) met us in clinic. Linda was working hard today to get all my scans on a disc for me to bring to my third doctor on Tuesday.

If you want to know why I love and support Georgetown University, it is because of people like Linda and Tim. Georgetown has become my medical home, and though I do not know the oncologist there well, I do know the support staff has become like family. My appointment today with the doctor was interesting. I characterize it as interesting because in my perspective he was humble. Humble because he knows he doesn't know the answer to my problem any more than I do. I am no oncologist, but I know enough about cancer first hand to know when push comes to shove no scan or doctor can predict what will happen to me. I am sure for some of my readers all of this may come as either a shock or a surprise. We want to strongly believe that if we see a doctor, he/she will have a solution to our problem! But modern medicine in so many ways is NOT modern at all. It doesn't have all the answers and as even today's doctor admitted my situation is rare. He told me if doctors sit me down and say they have seen lots of people like me, then I shouldn't believe them. He said he wished he had a crystal ball and could tell us more about my mass and its trajectory, but he can't. It is with that, that I said I know this all too well. Medicine doesn't have all the answers because if it did Mattie would still be alive today. He got what I was saying, and I felt we understood each other quite well.

Though I did not feel this way last week, today I felt as if the doctor wanted to accommodate my concerns and desires and began including me as part of the care team. An approach that works best for a person like myself. So we are working on a strategy for the next month that involves additional scanning and the potential to try to do a biopsy. Because of the mass location, this may not be possible, but he is consulting with several radiologists on this. Needless to say, today was just a very emotional day back at Georgetown. I cried with the doctor, I cried in the clinic, I cried with the man taking my blood, and then I cried for two hours after I left Georgetown. While I was getting my blood drawn, I was hysterical and there was an older woman sitting next to me getting her blood taken as well. She told me she has leukemia and that I chose the best facility in Washington. With that I told her I lost my son to cancer at Georgetown and know the hospital all too well. She was down right shocked to hear me say this and responded by saying that I have experienced "the worst kind of loss."

Unlike with Mattie, I do not know what I have. I may not have cancer at all, but one thing is for certain I have two choices, one is to get the entire mass removed, or live with periodic scans for the rest of my life (assuming that the mass doesn't change in size, because if it changes at all, then the decision to have surgery will be made for me). I am worn out tonight and somehow have to get a drip on this reality before the stress of this situation makes me completely sick.

Wednesday, February 15, 2012

Wednesday, February 15, 2012

Tonight's picture was taken on Valentine's Day of 2009. My last Valentine's Day with Mattie. Mattie was in the hospital for yet another holiday and that day Jenny and Jessie (his art therapists) worked with him in the childlife playroom to create a special gift for me. Mattie designed many things that day, from the paper crown on my head, to a valentine's box with cards, and then he also gave me a clay painted vase (that he had been working on over time) with tissue paper flowers. When he presented all the gifts he made, Jenny snapped a picture of that moment. The picture wasn't posed it just happened naturally and Jenny captured it. This is one of my favorite pictures of Mattie and I in the hospital. Why? Because this was a very typical moment for Mattie and I. He would always stare at me in my eyes and want to touch noses. It was like his sign of connecting and affection. Needless to say, I have all these gifts still. The vase with tissue paper flowers is in my living room and the box with valentines and crown are in our bedroom.

Quote of the day (actually a poem): I Wish You Were Here by Angela Salyer

Although from Earth, our loved ones are gone

They live in our hearts as time goes on
God truly blessed us with the time that we had
Though their departure leaves us very sad
"Time heals all wounds" We've heard it before
A broken heart gradually begins again to soar
God works miracles in His time, not ours
Not by our wishes, but by faith and prayers
By each person he claimed, we were given a gift
Wonderful memories for our spirits to lift
Reunions and Christmas, and simple every day fun
To carry with us always, until our work here is done
Thank God for Kodak, for video and audio-tapes
And for the time together that this family takes
The message is clear from those who have started life anew
"We're waiting in Heaven for each and every one of you"
Each one would say "Don't cry for me dear"
"This place is wonderful, I wish you were here"

Back on June 7, 2010, I posted the above poem entitled, "I wish you were here." If you go back to that blog posting you will see that I was less than happy with this poem. Keep in mind that Mattie had died only nine months before I read it and for the most part I could not manage the feelings expressed by the author. In addition, those closest to me, know that I am very capable of lashing out both verbally and in writing. My friend Ann says to me at times she has to be like "Teflon" because otherwise, the things I say to her would probably be considered hurtful. Naturally I do not set out to intentionally hurt anyone, but when I feel most vulnerable and dealing with Mattie's loss, my ability to censor or present things in a more palatable way simply decrease.

Today, I actually received an email from the author of this poem. Angie is a survivor of multiple losses and she actually uses poetry and writing to express herself and her feelings about the various tragedies she has endured. Angie shared her poetry with only selected people, and was stunned to find this particular poem on the Internet and on Mattie's blog. Writing can be a very private and personal thing, especially when it reflects upon one's thoughts and feelings regarding a loss. Therefore, I am sure finding her poem all over the Internet and on a blog was a bit disconcerting, especially since from her vantage point she never gave any of us access to her inner most thoughts. As I told Angie today, the poem was sent to me by a friend who found it on the Internet. This is the beauty and the complexity of the Internet these days. It gives us access to everything, even maybe to things that weren't meant to be published.

However, my comments about Angie's poem were less than complimentary back in 2010 and as I told her my intentions were not to insult her but instead were a reaction to my own hurt and anger over Mattie's death. Angie wrote the poem to bring comfort to her own life and world, and I imagine was quite upset when she perceived her poem as causing me or anyone else pain. But here is the thing, as I told Angie tonight, her poem (though I did not agree with it in 2010) was actually therapeutic. I view it that way because it helped me express my frustration and anger, it got me to sit down and write and get out my feelings. Whether they were positive or negative. To me the expression of any feeling is very healthy especially when dealing with the death of a child. Now almost two years later, I can reflect on Angie's poem and Angie's email today and I can see my own progress. My progress is that I can appreciate where Angie was and is coming from, and understand that her faith in God and her expressions in poetry are avenues that continue to help her with grief. I can now step back and see a different perspective to this poem and appreciate the meaningful intention Angie had when writing it. I think it took Angie great courage to write to me today, but as I said to her, I learned something about myself and about grieving. We all have different ways and needs to cope with our loss and losses and the greatest gift in all of this is we can unite together and discuss these differences and our similarities. This further confirms to me that the grief process is a life long one, in which I learn and feel something new with each turn.

My health saga continues. I saw one of my two doctors today who followed up with me about the MRI results. She and my doctor at Georgetown have two completely different strategies on how to proceed. Just NOT what I needed to hear. The doctor today asked me to trust my gut feeling as to what to do. I told her my gut feeling was ALWAYS right with Mattie, but frankly I have absolutely no inner voice when it comes to understanding my current situation. I have no idea why that is the case other than I am probably so bogged down with emotion and fear that I can't hear/think straight. Any case, knowing that I have two very qualified doctors with two separate opinions makes me uneasy, so I felt the need to seek a third opinion. Again I reached out to one of Mattie's doctors, Kristen (the oncologist who is my friend and writes to me each tuesday in memory of Mattie), and she connected me with another top oncologist in the area who I will see on Tuesday. So I head back to Georgetown tomorrow to consult with my second doctor, but I know already how he feels about my situation. He presents the more aggressive and radical approach which will be a hard approach to listen to tomorrow.

Tuesday, February 14, 2012

Tuesday, February 14, 2012 -- Mattie died 127 weeks ago today.

Tonight's picture was taken in May of 2008, only two months before Mattie was diagnosed with cancer. Each spring Mattie would collect tent caterpillars. We do not have any where we live, but both his preschool and kindergarten in Alexandria had plenty of them in their outdoor green spaces. Mattie would transport several caterpillars home and together we would put them into two different jars. We would clean the jars each day and also make sure the caterpillars had plenty of oak leaves to eat. We learned quickly, by using our own scientific method, that tent caterpillars won't eat maple leaves or any other kind of greenery. Together we watched the 5 to 6 day metamorphosis process take place and eventually when the moths hatched, we would release them in a ceremony on our deck. We did this four Springs in a row, Mattie started this ritual in 2005.

Quote of the day: To live only for some future goal is shallow. It's the sides of the mountain that sustain life, not the top. ~ Robert M. Pirsig


Despite what is weighing on my mind, I did go to zumba today. It was a great hour where I forgot about tests and diagnoses for a while. After zumba I met up with Ann and we walked close to three miles together and then had lunch. We talked about normal things which was fine with me, but toward the end of the afternoon, we naturally resorted to my situation. I would like to forget what is happening right now and imagine that there isn't a problem at hand. But in all reality the more I research the issue, the more I see that my condition has two possibilities. It is either benign or it is malignant. The problem is however that unless these masses can be biopsied, then we do not know which issue I have. As I continued reading, I see why my doctors are in a quandary. They are in a quandary because these masses are typically misdiagnosed, because on scans they can look like the other. So clearly my readers are saying.... well just get it biopsied. Unfortunately, these masses may be in a location that isn't safe to biopsy. I will know the definitive answer to this on Thursday, but having some knowledge is a dangerous thing, and I also know that if cancer isn't caught early it can be deadly. So right now I find that we are once again living a very challenging existence that changes from minute to minute.

At one point today I honestly did not even realize we were in February and it was Valentine's day. That is until Peter surprised me with a card. I was never a big Valentine's day person anyway, because to me if you love and care about a person, that should be shown every day of every year. Not quarantined to just February 14.

One thing is for sure, I am blessed with wonderful friends. Friends who gave me cookies, candy, and lunch today. In addition, awaiting me at my complex's front desk was a dozen treats from Georgetown Cupcake from a dear friend who understood chocolate was needed! In addition, I went to Mattie's mailbox and a friend and colleague of mine who lives in Iowa and is a quilter had a mini-fundraiser in her studio and she surprised me with the proceeds she generated for Mattie Miracle. I try to stand back and assess the aspects of good fortune in my life. In so many ways, my friends are the "sides of the mountain" which tonight's quote so aptly points out "sustain life."

Monday, February 13, 2012

Monday, February 13, 2012

Tonight's picture was taken in August of 2007. We went on a family vacation to San Diego with my parents and while having lunch my parents took a picture of us. Mattie decided to come between us and hang off of our shoulders. The real monkey in the middle!


Quote of the day: When you are inspired by some great purpose.... dormant forces, faculties and talents become alive, and you discover yourself to be a greater person by far than you ever dreamed yourself to be. ~ Patanjali

My friend Charlie sent me this quote today and it really resonated with me. In the midst of my health issues, I found aspects of peace today while focusing on the Foundation. I suppose if I am unable to raise Mattie, my "great purpose" in life is therefore to keep his memory alive and to help other children like him. That is a huge and at times insurmountable purpose. But I am very focused upon the upcoming Foundation's Childhood Cancer Psychosocial Symposium and had a wonderful hour long conference call with Dr. Anne Kazak, the psycho-oncologist who I asked to serve as our symposium scientific chair. I found Anne over a year ago while conducting my own research literature searches. As I began scanning through her papers and her works, I immediately found that I resonated with her studies and her style. So I decided to email her and the rest is history. We have been connected ever since.

Naturally however, there were times today that it was hard for me to concentrate. Aziza kept in touch with me throughout the day as did Linda. I joked with Linda, because I said I need my own childlife specialist to make it through this crisis. Aziza is working hard at keeping me updated and calm. She chatted today with the radiologist who specializes in pelvic imaging and she shared with me her thinking. I follow up with my doctor on Thursday, and hopefully by then, they will have conferred with each other and figured out what they plan on saying to me. Nonetheless, despite my fears and anxieties, I am most grateful that I have a doctor like Aziza to talk with and who has taken on my case. A case which she didn't need to have, but as she says, "what are friends for?" All I can say is I have great friends. In the midst of Aziza helping me at Georgetown, I have Ann working her magic through Washington Hospital Center. So between these two well known facilities, it is my hope that there will be consensus on what we are dealing with.

This evening I began sending out invitations to our psychosocial symposium on March 20! I am happy to say that within 30 minutes, I had people registering. I hope that is a trend! Now the goal is to make it until Thursday. I find that if I am not medically ill, I will certainly be by the time this is all over. The stress of this is an absolute killer for me because I no longer react like a rational person. I am a person who has been scared by childhood cancer, and therefore even the mere mention of a mass or potential cancer sends me right over the edge.

Sunday, February 12, 2012

Sunday, February 12, 2012

Tonight's picture was taken in April of 2008 after Mattie's sixth birthday party. Mattie had a bowling party that day with friends from preschool and his kindergarten class. Throughout his party he wasn't feeling well and by the time it was over he had a raging fever. Naturally I assumed he only had a cold or flu. But now looking back, maybe this was a sign of the cancer that was taking over his body. One's mind doesn't go there when raising a "healthy" child. But my mind certainly goes there now. After the party Mattie was wiped out and exhausted. For Mattie to sit on our couch and put his head down, that meant he was very sick. Since rarely did Mattie stop moving around and engaging with his environment.

Quote of the day: Our greatest glory is not in never falling, but in rising every time we fall. ~ Confucius 

I woke up today at 5:30am, after another bad night of sleep. We arrived at the hospital at 7am. When we got to the MRI department we noticed that the waiting room lights were dimmed. We were concerned that the doors were locked. But when we pulled on them, they did open, which makes sense since that department is open 24 hours a day, seven days a week. Any case, as we entered, we moved toward the registration desk and noticed a man beside the desk jump up. He had been sleeping in his chair, probably tired from his all night shift. In any case, his jumping caught us off guard and all three of us landed up jumping in surprise. He eventually woke up enough to register me for the MRI. However, despite being there early, there was a patient in the machine before me who was tested for over two hours. So literally I waited 90 minutes until I got into the MRI room. I am so used to waiting in hospitals, that really the 90 minutes did not even bother me.

While Peter and I were waiting, another couple walked into the MRI center, and they had an even longer wait than I did, since after me, an emergency case came in and was given priority. Therefore this couple had to wait an additional hour. However, while we were in the waiting room, Peter grabbed a Georgetown publication called The Georgetown Star to read. As he was flipping through the pages, here is what we saw below..............................

When it was my turn to go back for the procedure, I had to get an IV line set up so that I could receive the contrasting dye for the MRI. The tech who worked with me was a lovely lady and she did not want to stick me multiple times unnecessarily. Since it is hard to find veins in my arms, she instead used my hand. This was actually quite painful and as soon as she stuck me in the hand, blood went gushing every where. On me and the floor. But again, this too did not phase me. What did phase me however was the location in which I sat. A location Peter and I took Mattie multiple times for MRI assessments. Mattie HATED MRIs, and for good reason. They are loud and scary. I could picture Mattie in each room today in this MRI department. The tech and I got to talking and it turns out her son was born with a rare cancer, but thankfully is doing well now. I listened to her story for about 15 minutes, and what I concluded is childhood cancer can't possibly touch your life without it affecting you emotionally.

The MRI itself was a 40 minute procedure. I have had MRI's of my head before, which are rather intimidating, since you basically are wearing a face mask and are confined inside a very claustrophobic tube. But today's machine was not a tube, and though it made a racket, as long as my head wasn't confined then sitting still is NO problem for me.

Once the scan was over, guess who I immediately text messaged? If my faithful readers guessed, Dr. Aziza Shad, you get a gold star. I wanted Aziza to know I finished the MRI and would follow up with the doctor tomorrow. However, in typical Aziza fashion, she asked me whether I wanted a preliminary report. Naturally my response was absolutely. Aziza's policy in her clinic, is that parents always find out test results the same day as the procedure, if it is possible. I can't tell you what a blessing that is, because the waiting around and wondering is like hell on earth.

Later this afternoon, Aziza called me. She had Mattie's radiologist do a quick read and told me that I actually have more than one mass and the concern is what is surrounding the mass. So it is my hope that this stuff can be biopsied. A pronouncement I need to hear from the doctor. So we are back to the waiting game.

As the day has worn on, Peter and I naturally feel different things. Peter is mad, angry, and scared! He can't believe this is happening to me and us. I understand his feelings and totally get how profoundly hard it is to walk back into the hospital and traverse the corridors we spent a harrowing 14 months of our lives. The problem with my situation is unless the masses in question can be biopsied, then we will never know definitively what they are, and the issue is the location of them. A location that may not be able to be reached for a biopsy.

Peter and I live with daily grief and the issues associated with this, but this week we are back to also feeling a heightened level of stress and anxiety that we developed in 2008. Back to when it was hard to eat, sleep, and function. I think this is a natural feeling for anyone playing the medical waiting game, but for us it is magnified ten fold because of our previous experiences and traumatic loss.