Saturday, March 23, 2019

Saturday, March 23, 2019

Tonight's picture was taken in April of 2004. Mattie was two years old and that weekend we took him to the National Zoo. Mattie liked the zoo, mainly because it had two of his favorite things..... being outside and surrounded by animals. Mattie had a natural interest in animals and it was fun to see the zoo through his eyes. 


Quote of the day: Pain is such an uncomfortable feeling that even a tiny amount of it is enough to ruin every enjoyment. ~ Will Rogers


Today was a nightmare of a day. The pain I experienced was over the top! Not necessarily from the surgery or the stent inside of me, but from the side effects from having anesthesia, being on pain meds, and a whole bunch of other medications. Kidney stones not only impact the bladder, but also the bowels. 

I was so bloated and in pain, I literally felt like I was going to burst. All of this triggered nausea and a headache. My doctor recommended walking and he felt that would help move things along. I tried walking all over our home for three hours. The only thing that succeeded in doing was stressing me out and at times I was keeling over in pain. Peter has been dealing with me and my symptoms for over a month now. I would have to say that being in chronic pain can be exhausting and debilitating. Not to mention depressing because you figure..... will I ever feel better? Be better? Not have pain?

Peter and I have a lot of experience with constipation, given our cancer care with Mattie. Many of Mattie's drugs produced constipation, which seemed even harder to manage in a child. We learned many tricks to deal with this painful nightmare. One of which was the daily usage of Karo syrup or when in a real crisis, the need for suppositories. I always say that Mattie was my best teacher, and even today, we need exactly what to do for me, given our experiences with Mattie. 

It was my first day outside walking with Sunny and Peter. Having fresh air helped greatly and though it was cold out, it was nice to have a change of venue. My kidney pain is much more manageable today and I am learning to live with the stent. However, I am quite happy it is coming out on Monday. Needless to say, I feel like I have a great doctor who not only is competent but is compassionate enough to make personal phone calls. He called me at 7pm on Friday evening, before going home. This wasn't the first call I received from him either. To me this is noteworthy, since most doctors are hesitant to extend themselves for their patients. But my doctor clearly understands pain and what it can do to patients. On Thursday, post surgery, as I was in the recovery area and totally out of it, I remember saying to my doctor.... you are the best! Which in essence I think he is because he empowered me to make my own decision about surgery, but counseled me wisely. 

Friday, March 22, 2019

Friday, March 22, 2019

Tonight's picture was taken in April of 2003. Mattie was one year old and was beginning to hold onto furniture and take a few steps that way. I just loved Mattie's facial expression in this photo. In fact, I had framed this photo and it was attached to our refrigerator. When Mattie was a preschooler, he was intrigued at looking at photos of himself as a baby or toddler.

So much so, that in May of 2006, when Mattie was four years old, we took the photo off the refrigerator and Mattie posed with it by the same coffee table. The photo showed Mattie's physical progression. 

















Quote of the day: Here's to a speedy recovery after your surgery, and in the meantime, enjoy being waited on by your family. ~ Unknown


It is 5pm on Friday, and I would say, I am beginning to rejoin the land of the living. Not necessarily by choice, but upon request from my doctor's office. Who says they want me walking around today! Yesterday was a full day, it started with getting up at 4:45am. We reported to the surgery center 6am and the registration process began. The ironic part about yesterday, is I really tried not to focus on the surgery or the fact that I never had general anesthesia before. 

I have been living with a month of pain, so the notion of someone knocking me out for a bit without pain sounded good. Of course that delightful out of it feeling only lasts for as long as the anesthesia is in your body. Everything about yesterday went smoothly at the Hospital. A real night and day from when Mattie was in the Hospital. In which it seemed like I was fighting every aspect of the system, in order to get Mattie's need met. 

My day started off with a wonderful Post Anesthesia Care Unit (PACU) nurse. His name was Greg and he escorted Peter and me to a bed in the PACU. Literally there was little activity at 6:45am, however, as soon as 7am came around, the place began to bustle. 

I took the photo above and this one from my PACU bed. What is the significance of Peds 1? Well this was the area we went to when Mattie was recovering from his many marathon surgeries. What are the chances I would be stationed in the same bay? Any case, during the intake process, Greg got to know both of us and when he learned about Mattie, he sensitively asked whether we wanted to move to a different bay. I said no. 

Peter and I then were greeted by my doctor, who answered more questions and reassured us. I observed many surgeons buzzing about yesterday and to me they all have the same personality profile...... calm and confident. 

Then came the anesthesia team. The resident actually, who introduced himself to me and then told me he would be working with the attending, Dr. DeJesus. The resident started to examine my veins and then slapped my left hand HARD several times. I said.... you aren't going to but an IV in my hand are you? Of course the answer was yes and I was told this is the best place for an IV during surgery as they like to keep the arms feel. I wasn't going to fight that logic, and I was happy he at least injected me with some sort of numbing agent before continuing the process. 

After the IV insertion, I met a charming anesthesiologist named, Dr. Matt DeJesus. I focused on his name, Matt! What are the chances that I would be in Mattie's PACU bay and be treated with a physician whose first name is Matthew? I took it as signs. Dr. Matt was charming, personable and reassuring. In fact, I have yet to meet an anesthesiologist I haven't liked! Well strike that, the pediatric anesthesiologist when Mattie was undergoing his surgeries was a nightmare. We never saw eye to eye on pain management. But every other anesthesiologist who has worked personally on me, was a God sent. 

When I got home yesterday, I was in bad shape. I literally felt like I was hit by a baseball bat in the kidneys and urinating felt like passing razor blades. Then last night kidney spasms set in and when it was all said and done, I could not fall asleep until after 2am. I never slept yesterday either right after surgery. In fact, I found that the anesthesia left me feeling agitated. So agitated, I couldn't sleep and forget about getting comfortable. 

I am on so many different medications now, that Peter is recording when I need to take certain meds and at what time. Overall, this afternoon is much better than yesterday or this morning. I can't say having this stent in me that runs from my kidney down to my bladder is comfortable. I keep reminding myself that it is coming out on Monday and to hang in there. It truly was a conscious effort today to prod myself to get out of bed and try to rejoin the living. 

Thursday, March 21, 2019

Thursday, March 21, 2019


Tonight's picture was taken in April of 2006. This was one of my favorite photos of Mattie and I. We went to the Reston Zoo that day and took a ride in a tram around the property. While on the vehicle my friend snapped this photo of us. Mattie loved the Reston Zoo. It was the perfect venue for him, as it was never really crowded, it was small and doable, and there were many hands on animal activities which  intrigued him. 






Quote of the day: and once the storm is over you won't remember how you made it through, how you managed to survive. You won't even by sure, in fact, whether the storm is really over. But one thing is certain. When you come out of the storm you won't be the same person who walked in. ~ Unknown

Vicki made it through the surgery in great shape and although she is managing with the pain, she is doing great. Thank you to all who checked in today and sent us messages and were there in support of us as well as thinking of us. It made a great difference! Vicki will share more details tomorrow.

Wednesday, March 20, 2019

Wednesday, March 20, 2019


Tonight's picture was taken in March of 2004. Mattie was almost two years old and was full of life and energy. Mattie loved being outdoors, regardless of the weather. As you can see he was headed outside onto our deck and saw I was trying to take a photo. I believe Mattie probably was reaching for the door knob to prevent the photo from taking place. Mattie was typically compliant with my photo documentation needs, but there were times this did not fit into his plan. 




Quote of the day: Calcification is the hardening of body tissues by calcium salts or deposits. Although calcification itself is not considered a disease, it has been shown to be a significant contributing factor in nearly every known illness and aging condition, including heart disease, kidney stones, gallstones, chronic inflammation, arthritis, cancers, cataracts, eczema, psoriasis, and even wrinkles. ~ David Wolfe


My day did not go as expected. I called my doctor back this morning as he suggested. Needless to say, when he heard I was still in pain and the stone hasn't passed, he encouraged me to keep my surgery appointment for tomorrow. Especially since we are going away next week for Mattie's birthday. He made enough of a case to me, that I conceded to have the surgery. Basically I had to accept that my quality of life right now is awful and the pain has exhausted me. I also remember my other urologist telling me that this is the best person in the area to do the kind of surgery I needed. Therefore, I do not want to be away from DC and need an emergency surgery with another doctor. 

So at 6am tomorrow, I report to the hospital. I am having in essence three things done: 1) a ureteroscopy, to catch and remove the kidney stone in my ureter, 2) laser lithotripsy (is a procedure to break apart kidney stones in the urinary tract. It is done with a ureteroscope passed into the tubes of the urinary tract. The laser breaks the kidney stones into smaller pieces that can either be removed by the surgeon or pass out of the body in the urine.) and 3) the insertion of a stent which I will have in me for a week.  I included more information below in case you are interested. 

I am preparing myself for several rough days after surgery. As I have heard the stent is very uncomfortable and leaves you with the sensation of needing frequent bathroom trips. Which isn't far off from what I am feeling right now. 

Tuesday, March 19, 2019

Tuesday, March 19, 2019 -- Mattie died 495 weeks ago today.

Tonight's picture was taken in March of 2003. We took Mattie to the US Botanical Gardens with my parents. My mom snapped this photo of us. Only Peter was actually looking at the camera. Mattie and I were doing our own thing and look at the kid in the lower left hand corner of this photo. He was clearly observing our antics! As I am sure we were a sight, as I was trying to get Mattie to smile and look at the camera. 


Quote of the day: One must be reasonable in one's demands on life. For myself, all that I ask is: (1) accurate information; (2) coherent knowledge; (3) deep understanding; (4) infinite loving wisdom; (5) no more kidney stones, please. ~ Edward Abbey


I have been dealing with a kidney stone since the beginning of February. I am determined to pass this kidney stone naturally, or I keep hoping that I will. The surgery doesn't sound pleasant, especially since a stent is inserted and remains in me for a week. I have had past issues with my bladder and every time I get scoped or anything is done that is invasive, I develop MORE symptoms from spasms to even incontinence for a period of time. So I am truly not eager to sign up for more of this. 

All I can say is that for the past couple of weeks I have consumed more water than a fish. This is a highly unnatural process for me, as I do not enjoy drinking fluids. I never have, and I know where this originated. When I was a child, my peers always made fun of me because I was always running to the bathroom. If I drank something, sure enough, I would need to stop whatever process we were on (even school field trips) to run to the bathroom. So in my head I equated drink fluids to something bad.... being made fun of and feeling different. Therefore, the only thing I felt I had control over was fluid intake, I figured if I drank less or nothing at all, I wouldn't need to run to the bathroom. For the most part that was correct. But of course that decision has long term consequences. 

Despite my issues with fluid, I never had a kidney stone until I took a medication several years ago for migraines. It was my neurologist who caught the connection between Topamax and calicium oxalate kidney stones. Despite the fact that he took me off of the medication, the damage was already done. In two years of being on the med, I developed 4 kidney stones. Mind you I haven't generated any other new stones since I have been off the med. The one I am dealing with now, is stone #3. I have passed two already, but this one is being difficult. Of course I have another one still in my kidney, but I can't focus on that one right now.  

This afternoon, when I got back home from running chores, I saw I had a voice mail message. Who was it from? Try my doctor! My doctor actually called me himself and also gave me his cell phone number. I am not sure why I am so shocked! Mainly I guess because the only other doctors I know to freely give out their cell numbers are pediatric oncologists. In any case, he wanted me to know that I was being supported, especially since this has been going on for a while and it can be painful and debilitating. He has me tentatively scheduled for surgery on Thursday, but he understands my desire to pass this naturally. He is open to this decision because he has been tracking my stone through xrays, showing that each week it is migrating down and isn't stuck. I promised to call him tomorrow with an update. In any case, I am quite certain after all of this, I could write my own handbook on kidney stones! 

Monday, March 18, 2019

Monday, March 18, 2019


Tonight's picture was taken in March of 2003. I think this photo is a riot! I can still remember taking it. We took Mattie to Los Angeles for the first time. He was 11 months old and was VERY confused by the three hour time difference. So he literally got up for the first several days at 3 or 4 in the morning. Mattie was up and alert while Peter and I were wiped out. Which was why Peter gave me that funny delirious look you see in this photo.   






Quote of the day: (picture a chicken talking to a farmer).... Big deal, so you passed a kidney stone.... think about what I do for a living. ~ Brian Fray

So I got this brilliant idea yesterday to look up home remedies for passing a kidney stone. There are all sorts of things on the Internet to address this health issue. I have seen a lot of it and some of it is too out  there for me to try, as I have no idea what herbal supplements will do to me and my system. I think we get complacent thinking that herbs are natural and safe, but in reality many prescribed drugs are made from herbs and therefore, a healthy level of caution is a good idea. But water, oil olive, lemon juice and vinegar? How bad could that be???? I assure you BAD!!!!!!!!!!!!!!


Last night I tried drinking 2 ounces of olive oil mixed with 2 ounces of lemon juice. It sounds reasonable, especially when you think about these ingredients making up most salad dressings. Well the only difference is on a salad it works, but on its own.... it's a nightmare. It was hard to swallow, but I got it down. However, for the remainder of the evening and night, I felt sick to my stomach. Which made me wonder if this recipe was for kidney stones or to address an upset stomach? Because if you are feeling queasy, this recipe is practically guaranteed to force the issue up and out. 

So NO more olive oil and lemon juice for me. But today, I decided to try the second half of the recipe..... water with apple cider vinegar. The verdict is still out on this, but I would have to say I am trying just about everything possible to pass this stone on my own. 

While working on our March newsletter today, I complied this photo..... our Mattie Miracle Walks from 2010-2018! This year will be our 10th anniversary Walk, a true feat. But what I love seeing is how the Walk has grown over the years. The photos truly capture how we evolved! 

Sunday, March 17, 2019

Sunday, March 17, 2019


Tonight's picture was taken on St. Patrick's Day of 2009. Several of Mattie's friends gave him all sorts of clover gear! Mattie decided to put them all on in order to get dressed up to go into clinic that day. Despite how ill Mattie was and how badly he felt, he still had an incredible spirit and love for life. 










Quote of the day: The afternoon passed more slowly that a walnut sized kidney stone. ~ Tom Robbins

The highlight of my day was walking four miles with Peter and Sunny. We literally walked from home to Roosevelt Island. Then walked around the Island and back home. Sunny absolutely loved the adventure and it was the perfect day to do this, not too cold or too hot. 

I am very aware that I have a kidney stone, and I have had it traveling around my body for over a month. In the beginning when I learned this I was hesitant to do anything. Now I figure, I have to live my life, which means having plans, but never forgetting to drink water along the way. 

I snapped a photo of Peter and Sunny on Roosevelt Bridge.... walking to the Island. 

The beauty of Georgetown, from the Roosevelt Bridge. 

Peter snapped a photo of us! Sunny was thoroughly confused, as to why we weren't moving and getting to the Island!

I love this aerial view of the Island's boardwalk from the Roosevelt Bridge. 

The Kennedy Center off in the distance. 

Do you see the lone pine tree in the center of this photo! I call this tree, "Peter's tree." Why? Because Peter snaps photos of this tree throughout all the seasons. It is an interesting way of tracking the the change in weather. The Island is beginning to show new green growth, promising that Spring is on its way. 

Saturday, March 16, 2019

Saturday, March 16, 2019

Tonight's picture was taken in March of 2003. Mattie was 11 months old and that was his first plane trip to California. I had to attend a conference and my parents watched Mattie while Peter and I went to the conference. As you can see Mattie had a way of filling up a home. I still remember snapping this photo. You can practically feel Mattie's energy. 


Quote of the day: Paul is part of an experiment. Instead of giving him morphine for his kidney stones, they are testing the healing power of laughter. ~ Unknown


Another day and NO kidney stone collected. It is very frustrating, as I consuming more water than one person should have to in a week. Between Sunny walks and chores, I spent the rest of the day glued to the computer. Trying to update our website, work on our March newsletter, and of course begin to revamp the Walk 2019 website. 

When I went grocery shopping yesterday, the clerk checking me out commented on how lucky I was to be able to go shopping during the work week. I admit that yes I have this flexibility, but then I also told him I do work around the clock. There is no down time, not even on the weekends. I am sure he thought I was either exaggerating or not telling the truth. Either case, when I stop, so does the Foundation. It is a hard reality to try to describe to someone, especially if you haven't had the experience of running your own company. 

Friday, March 15, 2019

Friday, March 15, 2019

Tonight's picture was taken in March of 2005. Mattie was lying between Peter's feet and clearly did not want his photo taken. I recognize that pose VERY well. Ironically, Mattie was fascinated by Peter's camera and its flash very early in life. I would say the camera intrigued Mattie even as a baby and clearly as a toddler Mattie wanted to know where that bright flash was coming from. He would track it, follow it, and reach his hand out to grab the actual flash attached to the camera. 


Quote of the day: They call them kidney stones. Imagine trying to swallow and digest a running chainsaw everyday, for a couple of weeks. ~ Unknown


I was listening to the radio the other day and they spoke about a phenomenon I never heard of before... Selfie Related Trauma! Just so we are on the same page, a Selfie is now defined in the Oxford dictionary as 'a photograph that one has taken of oneself, typically one taken with a smartphone or webcam and shared via social media.' Selfies have been linked to a large number of mortalities and significant morbidity worldwide. These serious injuries and deaths occur during or after having taken a photo of one's self, with the accident at least in part attributed to the taking of the photo.


The United States Department of Transportation estimated that during 2014, the so-called "year of the selfie," 33,000 people were injured while driving and using a cell-phone in some fashion, which can include talking, listening, and taking, uploading, downloading, editing, or opening of selfies. A 2015 survey by Erie Insurance Group found that 4% of all drivers admitted to taking selfies while driving.

A study was done on this phenomenon, and I attached a link below to the study, in case you want to read it for yourself.  When I think of a trauma, I think about a psychological issue, that results from an event. But with Selfie Related Trauma, there seems to be the reverse...... there is a psychological component FIRST that leads to an event (accident or death). Heavy selfie-taking and sharing selfies on social media sites and smartphone addiction are closely associated with narcissism and psychopathology. So what does this all mean? Do some people have a certain personality type that makes them more susceptible to cell phone usage and taking selfies?  Therefore, are these individuals more likely to be involved in accidents? I don't know, but it seems like one can draw all sorts of conclusions from these studies. 

What I do know is as a city driver, I see more and more distracted drivers all around me. Glued to their phones while driving, which is scary to see, as vehicles can be a weapon if not properly used! But the bottom line is cell phones cause great distraction, which isn't good if you are by the edge of a cliff. Which apparently is the preferred site to take a selfie (according the study below). What did we do before the cell phone? Before our minds were distracted and hyper alert to the bings, noises, and sounds? 

Media-based clinical research on selfie-related injuries and deaths:
https://www.journalagent.com/travma/pdfs/UTD-83103-CLINICAL_ARTICLE-DOKUR.pdf

Thursday, March 14, 2019

Thursday, March 14, 2019

Tonight's picture was taken in March of 2004. Classic Mattie.... as he never went anywhere without his sippy cup. Filled with MILK! So much for milk being good for the bones. It did not help Mattie's bones in any way. In any case, I clearly snapped a photo of Mattie walking around our home with Peter's ball cap on and I can tell just by looking at Mattie's facial expression that he was multi-tasking and did not have time for my picture taking. 


Quote of the day: I should start naming my kidney stones like they do hurricanes. ~ unknown


I tried to explain on Wednesday's blog my frustration. Frustration I had from dealing with the hospital regarding my kidney stones. I mentioned my feelings to a friend, a friend who has been advocating for childhood cancer for over twenty years. In any case, she did not like what I was reporting to her, and she confirmed I had every reason to be upset, bordering on angry. 

I have been sitting with these feelings and then today it dawned on me.... why not write to patient advocacy at the hospital? I can't tell you how many times I called these advocates in to intercede when Mattie was in the hospital. These folks are well trained, listen, ask intelligent questions and then evoke change. In fact, I remember it got to the point where I would tell a medical provider that I was not happy with their treatment of Mattie and that I was going to call patient advocacy on them. Just the notion of patient advocacy being involved made people jump and they took me seriously. 

Patient advocates are employed by the hospital to truly listen and manage the issues and needs that arise for patients and families while undergoing medical treatment. I assure you there are a ton of issues that arise and most of them revolve around POOR communication between providers or providers to patients. 

Given that we are donors at the Hospital, I naturally know who heads up patient advocacy. I wrote the following letter today and sent it to my contact. Keep in mind I tried to remove names and other identifiers for this blog posting. 

---------------------------My Letter ------------------------------

I am writing to you about a very frustrating, and in my opinion an inappropriate, experience I recently had at your Hospital, not as a donor, but as a patient.  I am currently being treated by Dr. P for kidney stones. I was referred to him by my own urologist. I have been working with Dr. P since March 5th.  My concerns do not involve Dr. P, but rather the Hospital staff that I have had to communicate with regarding my condition.

Due to the nature of where my kidney stones are, Dr. P scheduled tentative surgery for me on March 21, in case the stone does not progress on its own.  Therefore, I have received calls from the Hospital to prepare me for the date, where to report to, the length of the surgery, and expected recovery. Then this Monday, March 11, I received a call in the afternoon. The representative I spoke to was named J, and she explained that she was calling about my surgery and was going to do an “intake.” 

I think your Hospital and I have two very different ideas of the word “intake.” I was expecting more of a medical interview or more preparatory information regarding my surgery. However, what I quickly realized was that this was not a medically related call at all. If J had explained in her introduction that she was from the billing department and was going to conduct a billing intake, I would have felt better prepared for her conversation. 

J focused on how I was going to pay for the part of the surgery not covered by insurance. Literally J was throwing all sorts of numbers at me, such as the price of the surgery. She was progressing through fees and deductibles so quickly, with no regard to the fact that I did not have paper near me to take notes and I did not have a copy of the cost of the breakdown of services she was quoting me. As the patient, I was clearly working at a deficit. She then asked me how I planned to pay for my deductible. I truly had no response for her because I felt like I needed more facts about my insurance plan before proceeding with how I was going to pay for this. Because of my hesitation, J started talking to me about payment plans and said that she would call me again this coming Monday to follow up.

The call was frustrating because I felt ill prepared, I did not have the facts in front of me which J had, and I did not realize we were having a billing call until she jumped right into it. Unfortunately it did not end there. Somehow my concerns about billing from that phone call were translated into my medical care. When I went for a follow up visit with Dr. P on March 13th, I was first greeted by his medical resident. Literally his resident said he “heard” that I had issues with paying for the surgery and therefore perhaps did not want to go through with it. I was absolutely stunned!!!! As I never expected my conversation with the billing department to make its way into a medical conversation, especially since I felt that instead of getting sound medical advice, I was getting advice based on whether I could pay for the surgery. 

Once I explained to the resident why I hesitated with J, he understood immediately that I just wanted more specifics from my insurance plan, but that I could pay for the surgery. Yet I felt judged by the billing department and in the initial conversation with the resident. I would like to think that your Hospital does not pick and choose who will get services or the quality of services based on how much they can afford. This was never my experience before with the Hospital. As you know we have a long-standing relationship with the Hospital as Mattie was treated for Osteosarcoma for 14 months and died at your Hospital. I have great compassion for those members of our community who are unable to pay for their medical care, and now truly understand how they must feel, as I was treated like that this week. 

So just to recap, my issues are the following: 1) A billing phone call is not an ‘intake.’ At the very least it should be called a billing intake, so patients understand they are going to be talking about insurance and their account. Given that patients are not working with the same facts in front of them as your billing representatives, more detailed billing information needs to be provided on the call in a methodical, clear, and better paced manner. 2) What transpired in this billing intake should not have translated down to the patient-doctor relationship. I am coming to consult with your doctors for medical care. I want them to give me sound medical advice based on their expertise and experience, not clouded by how I plan on paying for the surgery. 

Given my experience working with Julie Andrews during Mattie’s care, I know the benefits of patient advocacy. Therefore, I decided to write to you in hopes that these issues will be taken seriously and that future patients do not experience what I did this week. I look forward to hearing from you about this matter and I am happy to answer any additional questions. Much thanks for your time and attention.  

Sincerely,

 

Victoria A. Sardi-Brown, PhD, LPC

Co-Founder and President

vicki@mattiemiracle.com

202-549-8036