Mattie Miracle 10th Anniversary Walk was an $119,000 success!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

March 25, 2011

Friday, March 25, 2011

Friday, March 25, 2011

Tonight's picture was taken in May of 2004. We took Mattie to Boston to visit Peter's parents. In their yard, they have a tree swing. Even as a child, I loved tree swings. So when I started dating Peter and would visit his house, rest assured, I was outside on his family's swing. When Mattie came into our lives, I wanted him to experience the joy of swinging. Mattie did not like swings at first, but over time, he loved the motion and the freedom.


Quote of the day: Winter is come and gone, But grief returns with the revolving year. ~ Percy Bysshe Shelley

I spent the first part of the day helping Peter get ready for his trip to Africa. In fact, while Peter was running chores, we ran into our friends Junko and Tad. That was a pleasant start to our day!

However, one thing saddened me. There was a beautiful maple tree outside our complex, that was chopped down today. Living in the city, I do not like to see any trees being torn down, but this tree had meaning to me. Mattie and I spent many spring and summer days by this tree. We collected the leaves and polly noses, as my grandmother used to call them, from the tree. These whirligig type things, made the perfect green noses, if you opened them up and stuck them to the bridge of your nose. Peter prepared me for this sighting today, and he opened up the conversation with me by saying..... Mattie wouldn't be happy! Indeed Mattie wouldn't have been happy to see this tree demolished, and I most certainly was upset. With the chopping of the tree, my memories by this tree were also symbolically taken away.

After Peter and I had lunch together and I helped him pack up, we said our good-byes. The Foundation had scheduled Senate office visits, and though Peter was leaving, he wanted me to keep to these commitments. Ironically as many of my readers know, I was on Capitol Hill just last week with CureSearch. CureSearch had their training and advocacy days and this gave me my first opportunity to traverse the Capitol on my own. So today's visit was very familiar to me, which for a directionally challenged person, is a GOOD thing. I wasn't sure if I would be able to tell our story and convey our message without Peter. Usually he is the facts person and I am the emotion person. Today, I had to be both! Fortunately I had Brett with us.

Brett is a managing director at Mercury (a high stakes public strategy firm), and as my readers know, has taken on Mattie Miracle as a probono client. I enjoy working with Brett a great deal. He has a calm demeanor, but is very professional, sharp, insightful, and also sensitive to our situation. When he talks sometimes, I wonder how he has the insights to grasp the horror Peter and I lived through. He understands it and does a great job at helping me convey the psychosocial needs of children with cancer and their families.

In fact, after our first meeting today, I told Brett I wasn't sure I could do this without Peter. Brett's response to me was he could tell I was up on the Hill last week. Mainly because issues were coming out of my mouth at a clip, almost well rehearsed and flowing well together. Though I was advocating for different things with CureSearch, it did help me get my thoughts and facts together, to make an even more convincing case for why the psychological and social needs of children with cancer need to be addressed. Later on today, Brett send me an email, after our visits were over. Part of his email said, "Vicki - great job today - I'm not going to say you reminded me of a professional lobbyist, but you did!" I told Brett that this compliment, coming from him, made my day!



I had the opportunity to visit three Senate offices today. During each meeting I had the opportunity to tell Mattie's story, to discuss the reasons for creating the Mattie Miracle Cancer Foundation, and our legislative goals. Visiting the Hill without Peter, after the week we just had, was challenging. All I wanted to do today was to crawl back into bed and do nothing. However, as I was walking to the Metro to go to Capitol Hill, I reminded myself that there are thousands of children each day, along with their families, stuck and scared inside hospital rooms receiving treatment. That sobering reality, gave me the energy to pull it together and get my thoughts straight. But I must admit there are days without Mattie around, when my passion, focus, and drive dwindle. He was the driving force for me to battle cancer. Now I continue to battle cancer, but it isn't his cancer per se, it is childhood cancer in general. Brett knows I like to document all our visits with photos, so he was kind enough to snap several pictures today.



Our first visit was to Senator Dianne Feinstein's (D-CA) Office. There we met with Nora Connors, Legislative Assistant. I explained to Nora that I went to high school in North Hollywood, CA and that my parents still live in Burbank, CA. So though I do not reside there now, I am well connected to the State. Nora listened to Mattie's story and was not only engaged in the facts we were presenting to her, she also expressed her sympathy for our loss and commended Peter and I for starting a Foundation. She said NOT everyone would do this. I appreciated her honesty and the time she spent with us.


Our next visit was to Senator Kay Bailey Hutchison's (R-TX) Office. There we met with Coalter Baker, Legislative Correspondent. Coalter listened to our story, the facts we presented, and was gracious with his time.







Our last visit was to Senator Frank Lautenberg's (D-NJ) Office. There we met with Dennis Sendros, Legislative Assistant. Senator Lautenberg is a cancer survivor himself, so I knew he and his staff would have a great appreciation for the issues we were presenting and discussing.


In fact Senators Feinstein, Hutchison, and Lautenberg are all members of the Senate Cancer Coalition and all advocate for the care and treatment of cancer patients. Today was a good beginning for us in the Senate, and a reminder to me that the issues we are discussing are of importance to those unable to advocate for themselves because they are in the midst of a diagnosis, treatment, survivorship, or like us.... grieving.

March 24, 2011

Thursday, March 24, 2011

Thursday, March 24, 2011

Tonight's picture was taken in June of 2004. We went to Connecticut to visit Peter's maternal grandmother, Gladys, who was hospitalized. We wanted to introduce Gladys to Mattie, since she hadn't met him before, and she was very fond of all her grand and great grandchildren. Gladys was a spitfire in many ways, but that was okay with me. We understood each other and we both spoke our minds, which others do not always appreciate about us. We brought Gladys all sorts of things to eat that day, since like me, Gladys loved and enjoyed food. Despite the fact that there wasn't much to do in the hospital room, Mattie was very patient, played with the toys we brought him, and understood that visiting someone you love who was sick was important.  


Quote of the day: Grief is not a time bound process that ends in detachment. ~ Kenneth J. Doka


When Peter woke up he felt slightly better. He decided not to take any anti-vert today. Despite the need to rest, he worked the whole day at home. Later in the afternoon, we headed to Georgetown University Hospital to meet with an Ear, Nose, and Throat doctor. Fortunately we had Peter's MRI disk in hand, along with his blood test results. Being on Georgetown's campus is challenging for us. Almost every corner of the Hospital holds memories for us. I wasn't exactly sure where the doctor's office was, but once we got there, all I could think of was.... I have passed this office SO many times before with Mattie! It just never registered with me. The office is quite close to the HEM/ONC pediatric clinic.

As Peter was filling out a ton of paperwork, I asked the ladies at the front desk if Ava was there. Ava is the coordinator Dr. Shad connected me to, and who literally made today's appointment possible. I felt the need to meet Ava in person and to give her a hug. When Ava saw me, she expressed her concern, her prayers, and her hope for everything to be okay with Peter. She told me I could call her anytime.

Though we waited a while to see the doctor, it did not matter to me. From my perspective, he was doing us a MAJOR favor by seeing us at the last minute. Dr. Kim is a very straight forward and practical physician. He asked Peter very thorough questions, examined him, and listened to both of our concerns. After looking at the MRI and conducting an examination, he felt that Peter is suffering from a viral infection. We asked him how Peter could have contracted this, and his response absolutely fascinated me. First of which, he agreed with us that between Peter's stress level and vaccinations (which he had to take to go to Africa) helped to compromise his immunity. In addition, I can not adequately explain this like Dr. Kim, but in a nutshell, he said that when our immune systems are compromised, viruses can attack areas of sensitivity and those areas in which we have had previous problems. So in essence as he was talking, I was envisioning our body as having its own memory.

Dr. Kim talked with Peter about his trip to Africa tomorrow. He was actually very interested in Peter's work. The doctor felt that with Peter's improvements today and the fact that he is off anti-vert, that it would be safe for him to travel on Friday. Peter is traveling with several prescriptions, and Dr. Kim feels that within a week or two, all the symptoms will be gone. He says that they can last quite a long time, and wants Peter to follow up with him when he returns home. Dr. Kim works closely with Dr. Shad, and it was very evident without Aziza's help, today's connection would never have happened.

As we left Georgetown University Hospital, I could tell that Peter felt less nervous about his condition and actually about the whole visit. In a way, I think there is some level of comfort about being treated at Georgetown. Walking the halls of the hospital, is in a way like walking the halls of a very familiar place. A place where we spent many days and nights.

After our Hospital visit, we then ran chores. We had to pick up Peter's prescriptions, get things he needed for his trip, and to also stop by his office to pick up paperwork. I haven't been in Peter's office in a while. As I walked into the room, I was struck by all sorts of things that were Mattie's. Such has his artwork, a mouse pad with Mattie's Halloween picture on it, a Mattie painting, and even a flowerpot Mattie painted in preschool for Father's day! I am not sure why I wasn't expecting to see these things, but seeing them evoked all sorts of feelings in me. As if Mattie were somehow in that office with us. Mattie loved visiting Peter at work, and I remember the last time I took Mattie into Peter's office, he was drawing on Peter's dry erase board.

After a long and harrowing week, I finally feel that we have gotten down to the bottom of Peter's illness. As he heads to Africa tomorrow (of which I am nervous about), I head back to Capitol Hill on behalf of the Mattie Miracle Cancer Foundation to visit three Senator offices. So stay tuned for that update. In the meantime, I thank all of you who have walked this scary week with us, I appreciate your kind thoughts and support.

March 23, 2011

Wednesday, March 23, 2011

Wednesday, March 23, 2011

Tonight's picture was taken in May of 2004. Peter and I took Mattie to the reflecting pool right by the Lincoln Memorial. During the spring months, we always found ducks and ducklings in the reflection pool. Mattie loved these sightings, and would always say.... "there is a mama duck and her baby, just like you and me." We loved watching the ducklings together and as you can see in this picture the ducks brought him great joy and laughter.

When I look at the shadow of this picture, I can see that I had my right hand attached to Mattie's pants, just in case he was planning on jumping into the water. Peter and I always would think ahead in situations to try to avoid accidents and to protect Mattie. It is most ironic that despite our best efforts there are things, such as cancer, that wake us up to the reality that we were never really in control.


Quote of the day: After the separation of death one can eventually swallow back one's grief, but the separation of the living is an endless, unappeasable anxiety. ~ Tu Fu


I can speak to the power of the blog, since I have received some wonderful emails in the last day or so regarding Peter's illness and how to help his symptoms. I truly appreciate those of you reaching out to me, and offering your support. Peter worked from home again today. Working from home can have a slacking off kind of connotation. However, frankly I am not sure how Peter has been able to work at all this week, given his dizziness, nystagmus, and now headache. Literally you might as well transport his office to our home this week, because basically our first floor has turned into Voxiva (the company that Peter's works for). Peter spends hours on conference calls all over the world, and tries to manage people in the process. While I was getting ready this morning, I could hear him on one conference call in particular. Even when Peter is giving negative feedback to people, he does it in a professional and dispassionate manner. He is the polar opposite of me. After the call was over, I told him I admired how he handled the situation, because I would have absolutely lost it on the phone.

I know what Peter does at work, but I haven't had to see him AT WORK in a while. So for me, this week was very revealing, and it gives me insights into the stresses he is under, on top of the major stress of grief in our lives. Having been a professional who researched stress and its effects on the body and emotions, I can't help but wonder how stress is impacting Peter's current physical state. Peter will be seeing an ear, nose, and throat doctor tomorrow, so I hope to have some more definitive answers.

This morning, I headed back to the hospital, for an eye exam. This wasn't a pressing issue in my book, but it was for my internist, so I went. The opthomologist's assistant was absolutely lovely. She asked what my occupation is, and so I told her. She commented on how challenging it must be to listen to people's problems all day long. So I responded and told her, I would much rather do that, than be in the current situation I am in, which is grieving over the loss of Mattie. It turns out that this woman lost her brother to cancer when he was only 40 years old. Ten years later, she tells me she still hasn't gotten over this profound loss. She says her friends think she is crazy, that she needs counseling, and that she should move on with her life. ALL my favorite words! Especially the MOVING ON one! So we chatted about this, exchanged stories, and we both came to the conclusion that life will never be the same for us. We are no longer future planners, we live in the moment, and also understand that life is beyond our control. Before she dilated my eyes and left the room, she gave me a big hug. I told her we relate to each other because we are in a special club, the grief by cancer club.

I haven't had my eyes dilated in a long time, and it wasn't a feeling I particularly cared for. This feeling lasted for hours, and fortunately for me it wasn't sunny today, so I was able to drive home. I worked on all sorts of things at home and then later this afternoon I got a phone call from our doctor's office. They prepared a blood work report for us to take to the ear, nose, and throat doctor tomorrow. So again, I jumped back into the car and visited the hospital.

When I got home, my cell phone rang again. I could see it was a different hospital number calling me. Dr. Shad's nurse manager contacted me to find out how I was doing and how Peter was. She told me that she felt Peter's symptoms could be the sign of a basilar migraine, and she connected me with the head of the Headache Clinic at Georgetown University Hospital. I thanked Jan for her time, and her response to me was, "this is what we do for family." Mattie is no longer alive, but he has connected us to amazing people, who go above and beyond their job descriptions. Interacting with people like this restores my confidence in the world. There are many of Mattie's doctors (Aziza, Dr. Bob, and Kristen) following Peter's case from the side lines, so I know I am not medically alone.

Keep us in your thoughts tomorrow. We have one last day to figure out what is wrong with Peter before he potentially embarks on a long trip to Africa for two weeks.

March 22, 2011

Tuesday, March 22, 2011

Tuesday, March 22, 2011 -- Mattie died 80 weeks ago today.

Tonight's picture was taken in May of 2004. We took Mattie to the US Arboretum, and he was intrigued by the pond filled with huge koi! We bought some food for the koi, but Mattie really did not want to feed them. He was instead fascinated by watching them come to the surface, open up their big mouths, and ask for food from me.


Quote of the day: Grief has limits, whereas apprehension has none. For we grieve only for what we know has happened, but we fear all that possibly may happen. ~ Pliny


Tonight's quote is brilliant. It is brilliant because grief and apprehension go hand in hand. Once you have experienced a traumatic loss, it becomes hard not to live your life with great apprehension. Which most likely explains why Peter and I have been besides ourselves over his illness the past couple of days. Today was NO different, it was another difficult day. Peter is still not feeling well, and continues to be dizzy and have nystagmus (involuntary eye movements). Mind you I feel like we are playing to beat the clock, because on Friday of THIS week, Peter is scheduled to fly to Africa for two weeks on business. I have great hesitation about this trip especially when he is ill, and we don't know the cause of his symptoms.

I spent the entire day trying to make an appointment for Peter to see an ear, nose, and throat doctor. I honestly would never have imagined this to be so difficult, but I learned today ONCE again, that the worst thing on earth is to become physically ill! I find interfacing with medical staff over the phone, to make an appointment to see a doctor, harrowing. Half the time, the person on the other end of the phone isn't listening, or simply doesn't care what you are experiencing or trying to convey. This always amazes me, since the person who answers a doctor's office phone leaves a lasting impression on the patient. In fact it can cloud my whole impression of the office. Today, as always was no exception. I spent over 8 hours on the phone advocating for Peter today.

Later this afternoon, when I could see the first doctor I was trying to connect with wasn't going to work out, I sent Dr. Aziza Shad a text message. As my faithful readers know, Aziza is the director of the pediatric HEM/ONC division at Georgetown University Hospital. She is also the doctor who was with us the week that Mattie died. Aziza is NOT our doctor, however, whenever I have some sort of problem, I text message her. NO matter where she is in the ENTIRE world, she instantaneously responds back to me. When she got my message today, she immediately called me. The first words out of her mouth were..... "are you okay?" She understands Peter is the one who is sick, but she also has the sensitivity to understand that illness for Peter and I at this point in our lives is traumatic. Needless to say, after I told her Peter's symptoms she hung up with me and called Georgetown's Otolaryngology department. For the rest of the day, I have been working with this department to find a time for Peter to be seen. I have no idea what Aziza said to this coordinator I am working with, but this woman is understanding, knows that I lost Mattie at the hospital, and also understands the time pressure we are working with Peter's travels.

Why am I telling you this? I am telling you this because how people in doctors' offices interface with patients is very important. Being treated like you don't matter and are not being listened to is not helpful when you are dealing with a medical issue. I remember Mattie's favorite CT tech, Jey, once saying to me.... people working at a hospital should NEVER forget why they are there and most importantly that they are lucky enough at the end of the day to be healthy enough to go home. Jey always felt it was important to give 100% of yourself to the patients you work with, because that emotional connection can make a night and day difference for the patient. SO TRUE! His comment remains with me today.

I remember when Mattie first started treatment I would hear other patients raving about Aziza Shad. I of course hadn't experienced her yet, but I naturally absorbed all the comments. I want to assure you that Aziza is a busy professional, she isn't sitting by her phone waiting for my text messages. But what I learned quickly about Aziza is that once you are connected with her, this connection remains. Her level of commitment to her patients and their families is incredible, and she literally will answer phone calls at all hours of the day and night. Needless to say, she text messaged me throughout the day because she wanted to know that Peter was taken care of and received an appointment. I am one of the lucky ones who have people within the medical community to turn to for immediate help, but even with help today, it was a harrowing experience. My heart goes out to those without connections and for people who are unable to advocate for themselves. Something continues to be profoundly wrong with our healthcare system, and if you think I am wrong, just wait until you really need to see a doctor, and then I imagine tonight's blog posting will immediately come to mind.

In the midst of all the hours spent on the phone today, poor Peter is still home and suffering with dizziness and eye movements. This is what kept me motivated to get this resolved. I needed a creative diversion today, otherwise I wouldn't have managed the day. As many of you know at the end of the month and into April, I will be working with Donna's (one of kindergarten teachers at Mattie's school) class on several Matisse and Picasso art projects. During one of the sessions, I will be introducing the children to Matisse's beautiful and colorful "cutouts." So today, I worked on cutting out HUNDREDS of shapes from pretty origami paper. Children will use these shapes to create their own "cutouts" in class.

In 1941 Matisse was diagnosed with cancer and, following surgery, he started using a wheelchair. Before undergoing a risky operation he wrote an anxious letter to his son, Pierre, insisting, "I love my family, truly, dearly and profoundly." He left another letter, to be delivered in the event of his death, making peace with Amélie (his wife).


However, Matisse's extraordinary creativity would not be dampened for long. “Une seconde vie,” a second life, was what he called the last fourteen years of his life. Following an operation he found renewed and unexpected energies and the beautiful Russian-born assistant, Lydia Delectorskaya, to keep him company. Vast in scale (though not always in size), lush and rigorous in color, his cutouts (an example of such a cutout is on the left.... it is entitled, La Gerbe [a bouquet]!)  are among the most admired and influential works of Matisse's entire career.

Matisse generally cut the shapes out freehand, using a small pair of scissors and saving both the item cut out and remaining scraps of paper. With the help of Lydia Delectorskaya he would arrange and rearrange the colored cutouts until he was completely satisfied that the results. It took two years to complete the twenty collages and, after years of trial and error, a practical and appropriate method was agreed upon for bringing the collages to life as two-dimensional works.

After having cut the shapes, the second part of the creative process entailed pinning the cut pieces of paper to the walls of his studio, which created a paradisaical, garden-like world of organic shapes that resembled algae, leaves, seaweed, and coral, shapes recalling patterns that appeared in many of Matisse's earliest works, which floated atop brilliantly colored grounds. When the desired balance of form and color was achieved, the finished composition was glued to some type of support such as paper, canvas, or board.

After cutting out lots and lots of shapes today, I did a quick example of my own cutout, so you could understand what I will be encouraging the children to do and create. I will be giving each child a piece of foam core, and they will have access to lots of whole paper and preformed cutouts (which I made). Children will then create their own composition based on the colors and shapes that interest them. They will then have the opportunity to give their art work a title. The point of this exercise is to learn about a brilliant art form that Matisse created. He was a gifted artist, and even though he had physical limitations due to cancer, he still created, and delighted the world with color and shapes in the last 15 years of his life. I find cutouts very stimulating, and it is my hope that this will illustrate to the children that color, shapes, and one's perspective are what constitutes art. Therefore, we all have artistic talents within us and I believe teaching children about art and appreciating it must start at an early age. Children are natural creators, and I can't wait to see the colorful and fun things they will envision and produce.

March 21, 2011

Monday, March 21, 2011

Monday, March 21, 2011

Tonight's picture was taken in May of 2004. It was taken at the same time as last night's picture that I posted on the blog. Mattie came into the kitchen to help me with breakfast that day. He wanted to be picked up and given a hug. As you can see from this picture, Mattie gave very powerful hugs. He particularly loved being cheek to cheek. Something which I greatly miss now.

Quote of the day: If you've got to my age, you've probably had your heart broken many times. So it's not that difficult to unpack a bit of grief from some little corner of your heart and cry over it. ~ Emma Thompson

I did not think there was a way to take more years off my life than Mattie's diagnosis, battle, and death. But today proved me wrong! As my readers know, Peter has been VERY sick all weekend. I diagnosed him myself as having Vertigo. In fact, I recall him having a bout of it years ago. Of course, among Peter, our doctor, and myself, I am the ONLY one who remembers this and what was prescribed to him at the time. Peter has been dealing with nausea, extreme dizziness, and nystagmus. Nystagmus is rapid involuntary movements of the eyes, and I can assure you it is very disconcerting seeing Peter's eyes moving back and forth involuntarily!

I was determined to get Peter a doctor's appointment today, so I woke up before the doctor's office opened for the day and left a message on the appointment request line. Within 15 minutes the office called back and Peter had an appointment. Originally Peter and I were scheduled to visit four Senate offices today, however, Brett (who is assisting and guiding us on our legislative agenda) was also sick. So we were able to reschedule these congressional visits, which I felt better about because there was no way Peter could have made it to the doctor's office and then to the hospital for testing on his own.

Most of my doctors are affiliated with Virginia Hospital Center (VHC). I happen to love VHC because of the caliber of the medical staff but also because of the professional and patient friendly atmosphere they offer. Peter was put through all sorts of paces today from an EKG, blood testing, a neurological exam, and an MRI. As the day wore on, he and I were getting more and more concerned about his symptoms and what could be causing them. I observed his neurological exam (having gone through MANY of them myself as a migraine sufferer), and could see he performed just fine on every task asked of him. However, neither Peter or I can deny that his symptoms are serious and require an explanation.

VHC holds both positive and negative memories for us. Mattie was born at this hospital on April 4, of 2002. However, Mattie's osteosarcoma was also diagnosed by an x-ray at VHC on July 23, 2008. So this facility has captured the best day of our lives and the worst. The beauty about VHC is that you can usually find out the results of your radiology testing that day! That is a major advantage, especially when you are dealing with a person like myself who can no longer handle the anxiety of waiting and NOT knowing. Peter was also concerned about the news he was going to hear today, so much so that he packed a bag of things to stay over at the hospital. Thankfully, he did not need them! This was Peter's very first MRI in his life. The MRI process itself wasn't new to Peter since he helped Mattie through too many MRI's to count. Nonetheless, going through an MRI for yourself, gives you amazing insights into just what Mattie had to endure. Mattie's MRI's were not the typical 20 minute duration, they were two and half hours long! How Mattie's original oncologist HONESTLY thought a six year old could hold still in that trap, with all those frightening noises WITHOUT sedation was beyond me. In fact I thought that was cruel and unusual punishment, and one day it is my hope that this doctor gains the insights to understand how insensitive he really was being to a sick child and his family. It just points out that NOT all researchers are good clinicians.

All the staff in the VHC radiology department were beyond angels today. They could tell we were both upset and anxious to be there. They helped fast track Peter, and he was able to sit for the MRI 45 minutes ahead of schedule. In addition, as soon as the MRI was over, our doctor called us in the department and gave us the good news.... Peter's MRI was NORMAL! I needed to hear this since prior to the test, the doctor spoke to us about strokes and tumors. NOT what I could handle at this point. I was so nervous while Peter was in the MRI, I ate an entire chocolate bar!

Our doctor knew I was concerned, since I left her a voice mail message before Peter went into the MRI. I told her there is NO way I could survive the day without knowing the results. I reminded her about losing Mattie, and that I can not go through this again. Needless to say, she got my message, and was on top of things today.

So it is 8pm, and I feel like I have fought a war today. Thankfully, I have positive news to share with you. However, we still need to figure out what is causing Peter's Vertigo. So we await his blood results and in the mean time, I will taking Peter to an Ear, Nose, and Throat doctor. Though Ann is in Florida, she was following Peter's status today. In a way, we all thought Peter was going to land up in the hospital. Ann returns tonight and was planning on visiting us in the hospital if that was indeed where we landed up. Fortunately we are home, and thanks to Ann and Dr. Bob, we have a referral to an ENT.

I would like to end tonight's posting with a lovely message I received from Karen's (my lifetime friend) mom. Naomi wrote, "I also wanted to write you to tell you that your mom is so right about how important and groundbreaking your blog is. I never miss it and I am never disappointed. You and Pete continually grow as people with a purpose and always surprise me with your energy, intelligence, sensitivity and generosity. You are both wounded and still bleeding, but look at what you are accomplishing. Awesome."

March 20, 2011

Sunday, March 20, 2011

Sunday, March 20, 2011

Tonight's picture was taken in May of 2004. It was a Saturday morning and I was in the kitchen making breakfast. As usual, my kitchen assistant came in to find me and to offer a hand with his favorite weekend breakfast item, waffles. I picked Mattie up to put him on the counter next to me, and Peter snapped a picture of us!


Quote of the day: Grief is perhaps an unknown territory for you. You might feel both helpless and hopeless without a sense of a "map" for the journey. Confusion is the hallmark of a transition. To rebuild both your inner and outer world is a major project. ~ Anne Grant


Peter is still quite ill, so on Monday we will be headed in to see our doctor. Doctors seem to be a part of our lives now. Some how Peter's illness has caused me to feel even more upset than usual. Mattie's diagnosis will always be a part of me, and I NO longer look at physical complaints as simple or fixable issues. I look at them as the beginning of a serious problem. I am trying not to panic, but the trauma of Mattie's diagnosis created a pattern in my head, in that physical symptoms are instantly associated with cancer and death. Naturally that may not make sense, but then again neither does taking in a six year old to see the doctor with an arm pain and finding out the problem has a name and it is Osteosarcoma.

I was out grocery shopping today, and when I returned, I placed all my shopping bags in Mattie's stroller. Mattie's stroller remains in my trunk and it helps me transport things from our complex's garage to my front door. This afternoon, while pushing Mattie's stroller, I ran into JJ. As my faithful readers know, JJ is our resident Jack Russell Terrier, who loved Mattie. JJ and Mattie practically grew up together. After Mattie died, JJ was actually depressed. Yes animals can get depression too. JJ refused to eat for days. When Mattie was alive and healthy, JJ claimed a pair of Mattie's old sandals. JJ used the sandals as a play toy. He loved playing with something that belonged and smelled like Mattie. After Mattie's death, JP (JJ's owner) decided to throw the old sandals way. They were all chewed on and most likely in bad shape. JJ did not like JP's decision, and JJ ran to the garbage, dug the sandals from the trash, and carried them back upstairs to his area. JJ has a special connection with Mattie, and I think his reclaiming Mattie's sandals is quite a touching story. Which brings me to today. When JJ saw me pushing Mattie's stroller, he came flying over to see me. But he was more interested in the stroller. He kept examining it and smelling it. He then ran to my front door. I knew exactly who he was looking for. I told JJ that "he" (meaning Mattie) wasn't there! Watching JJ today illustrated to me that Mattie's death is felt even by our furry friends.

I had the opportunity to visit Mary (Ann's mom) today for a little bit while Peter was resting. Mary too is concerned about Peter and she told me she is saying a special prayer for him. I am signing off for tonight since I am not sure what tomorrow holds for us. Keep us in your thoughts.
I would like to end tonight's posting with a message I received from my mom. She intended to send this just to me, but as I told her, the message meant a lot to me so I am posting it here. My mom wrote, "The blog is historic and perhaps it is a first in the annals of the Internet for someone to write a public diary of a tragic life shattering event every day for over a year that continues to this day! Also, it has a devoted reading audience that has been moved by the powerful description of pediatric cancer and its devastating effect on the life of the child who ultimately died and the parents who must survive without him to go on with their broken hearts and shattered lives."