Saturday, August 10, 2019

Saturday, August 10, 2019

Tonight's picture was taken on July 31, 2008. You maybe asking.... what is this??? On July 31st, we had to tell Mattie what was wrong with him and how we were going to treat the cancer. Mattie loved bugs. So his art therapists gave him some clay. With the clay he formed a bug. We had Mattie visualize his cancer as bugs in his bones. So the way to kill these bone bugs, wasn't with bug spray but with chemotherapy. In essence the chemo would squash the bone bugs in his body. With that, we asked Mattie what his clay bone bug would look like after treatment. So he stomped on it with his foot, and this was what this photo captured. A smashed bone bug! It was important to explain bone cancer to Mattie in a way he could understand. Given his treatment was going to be so significant and radical, he had to buy into the process. 


Quote of the day: The word “Kebec” is an Algonquin word meaning where the river narrows. Quebec City’s location is at the intersection of the St. Lawrence and the St. Charles River. ~ hikebiketravel.com

Visiting Canada isn't like a typical Caribbean cruise. First of which it is cool, in the 60s with on and off again rain. Or torrential rain to be specific. 

I would have to say one of my favorite things on a Princess Cruise is their breads. All bread products from rolls to croissants. I would love to meet the bakers, because to me this is the best food on the ship. Despite the cool temperatures I ate breakfast on the balcony. 

Peter is not with me on this cruise. He is missed and as I particularly love watching him get jazzy about nautical directions, land masses we are passing, the stars, the swells and waves, you name it. Things that wouldn't necessarily catch my attention, but once he points them out, I see them too. So I am doing some Peter-isms on this trip in his honor. 

We toured Quebec today by foot. We had a three hour walking tour with an incredible guide, Danielle. She had incredible energy, loved to share history and stories about her city, and did a great job keeping track of all of her guests. 

As we walked passed the museum, you know I had to take a photo of this butterfly!

Quebec has an interesting history. Great conflict between the British and French for ownership of this territory. So literally part of the city has French architecture and the other English. Danielle, explained that the french influence uses pitched roofs and stone. 

While the English side tends to use smoother granite and flatter roofs. Honestly both sides are beautiful. Understand though that I stood in the middle of the street. On the right hand side of the street I captured the photo above and on the left hand side I snapped this photo!

Quebec utilizes all its flat spaces with murals. This one is incredible and the artist came from France to create this historical masterpiece, which depicts many of Quebec's great leaders like Samuel Champlain (the founder of the city!). 

They say that walking in Quebec is a lot like visiting Europe without crossing the ocean. I would say Quebec is charming, has preserved its old world charm, and celebrates its illustrious culture. 

This is truly whimsical. In the middle of the town square is a statue of King Louis XIV. He was placed in a snow globe. Literally there are fans inside the snow globe, providing movement to the fake snow. Here's the funny part about this.... the King never visited Quebec and never saw snow. However, since this once was a French territory, and he reigned over the city from a far, they have done what I consider an ironic tribute to their former king. 

Meanwhile today, Quebec has independent governance, yet still is a part of the British commonwealth and therefore symbols of Queen Elizabeth are found throughout the city. 

I never saw the movie, Catch Me if You Can, but apparently Leonardo DiCaprio was filmed in this square, coming out of this cafe! Though the movie was set in France, it was filmed in Quebec!

Quebec is divided into tiers. The photos above were taken in the lower tier. The tier heavily French influenced. To get to the upper tier, you can walk or take the Funicular. It takes about a minute. 

The Funicular puts you right outside the famous Hotel Frontenac. Built in the 19th century as an ideal stop over for the Canadian Pacific travelers. It is recognized as a National Historic Site of Canada in 1980. It has about 600 rooms!

See this symbol, it reads Je Me Souviens. Meaning "I remember." This symbolizes Quebec's history, a combination of the English and French. 

The crown at the top is for England, the lilies for France, the Lion for England, the Maple Leaves for Quebec! 

This red roofed home is the oldest house in Quebec. In fact, near this house, was the residence of Queen Victoria's father. Queen Victoria is responsible for one of the three roadways into Quebec. By the way, I should have mentioned that the upper tier of Quebec is a walled city. The wall is still preserved today!

Holy Trinity Cathedral, an Anglican Church. Danielle wanted us to see the interior differences between an Anglican and Catholic church. She said that the it is a city of churches, reflecting both its Anglican and Catholic histories. 

Interior of the church. To the left, in the balcony, was a special section designated for the Queen or her representatives when they are in Quebec. 

This monumental clock, the only one of its kind built by Richard Mille, is a gift from Switzerland and the Canton of Jura for Québec City’s 400th anniversary. Internationally recognized for its state-of-the-art watches, the company has created a work in keeping with the highest standards of fine clock making. This gift therefore symbolizes the bond of friendship between the Republic and Canton of Jura and Québec City.

It took more than 6 years of work and expertise from some hundred specialists in 28 trades to design and manufacture the clock. Its parts are crafted from premium materials such as titanium, ruby, sapphire, and aluminum.

The Aldred Building is an Art deco building on the historic Place d'Armes square in the Old Montreal quarter.

Completed in 1931, the building was designed by Ernest Isbell Barott, of the firm Barott and Blackader, with a height of 316 ft or 23 stories. Built at a cost of $2,851,076.00, Barott endeavored to design a modern building which would, at the same time, fit with the square's historic surroundings. The building's setbacks at the 8th, 13th, and 16th floors allow more light on the square and create a cathedral-like massing, reflecting the adjacent Notre-Dame Basilica.

Getting a feeling for the weather? We walked in down pours today, and it was cool! However, I would say that Quebec is a very large tourist stop. In fact, to me there were more tourists around us than residents. 

Then we saw the beautiful Notre Dame Cathedral. 

The interior of Notre Dame!

I have been a catholic all my life and never heard of the "holy door." Or its significance. Here's some historical context.......Pope Boniface VIII began the tradition of the Holy Year, known as a Jubilee, in 1300 and the Catholic Church has celebrated them every 25 years or so ever since. A major part of the Holy Year for Catholics is a pilgrimage to Rome and the ritual passing over the threshold of the holy door to symbolize the passing into the presence of God. At the same time, remission of the temporal punishment for sins is granted.

So literally this door you see here is opened every 25 years. Danielle said we would have to come back in 2025, to experience this open door! However, I had no idea that Catholics even made a pilgrimage once in their lives to traverse through a holy door. 

In its hay day, the priests of Notre Dame created and established this huge seminary. Many men were educated to become priests here. Now the seminary is much smaller and the remaining portion of this campus is instead used by the local college, specifically to train architects. 

You saw that we got to the second tier of the city by Funicular. Well the way down is accomplished by walking down steps!

On the way back to the ship, I snapped this photo. I think it helps to give you perspective of the city. It has the lower tier (where we were standing) and the upper tier (where the Frontenac Hotel is located, it looks like a castle on the mountain). 

Get a feeling for the walls around the city? At one time Quebec was going to tear down these walls. Luckily someone advised them not to do this, but to instead preserve them and their history! 

My mom with the Caribbean Princess as the backdrop!

At 4:30pm, we all went through the mandatory emergency safety assembly and at 5pm, we set sail. 

With rain and lightning!

 Good-bye Quebec. 

Something about this sail away reminded me of NYC! Maybe it is that big building that reminds me of the Empire State Building in the distance. 

Friday, August 9, 2019

Friday, August 9, 2019

Tonight's picture was taken in August of 2008. It was during Mattie's first hospital admission for chemotherapy. During our first hospital stay we did not know if we were coming or going. Mattie wore a hospital gown, which he hated. As we got more familiar with our space, we learned what we needed to bring with us while in the hospital, and Mattie chose to wear flannel type pjs always! Pictured here were Mattie's art therapists (Jessie and Jenny). They were incredible women who got it right away.... Mattie loved to be busy and create. 


Quote of the day: Quebec City is the most European of any city in North America; they speak French all the time. There is a part of town called Old Quebec which is really like being in France. The architecture is just gorgeous, food, shopping. I'd say Quebec City is the most beautiful city in North America I've seen. ~ Sebastian Bach

I got up at 5am today, in order to get myself dressed and on the road at 6:30am. We wanted to be on the cruise ship early, and to accomplish this we had to get moving given that it takes three hours to drive from Montreal to Quebec.

This was the beautiful view of Montreal from my hotel room. The green roofed cathedral is the one we visited yesterday, Marie-Reine-du-Monde Cathedral. 

We had a wonderful fellow, Nacar, who drove us for three hours. He was absolutely delightful and gave us a great tour of Montreal, provided us with some history on Canada, and his home country of Morocco. When I tell you we were talking up a storm for three hours with him, I am not kidding, and I am not even a morning person. 

Nacar pointed out this famous street in Montreal to us, St. Catherine's Street. There was literally a beaded canopy that traversed the entire street!

Montreal's Gay Village extends along Sainte-Catherine Street in the east end of downtown, between Saint-Hubert and Papineau. The Village sports a permanent rainbow decoration on its façade. For most of the summer, from mid-May till mid-September, Sainte-Catherine Street is completely closed to vehicular traffic through the Gay Village, making it one large pedestrian area, allowing all the stores to sell outside and all the restaurants and bars to serve on large, open-air terraces.

So what did our drive look like? Just like this!!! This is a very green country! We learned from Nacar, that Canada is the second largest land mass country, after Russia. 

Certainly Canada has large cities, but between the cities, are farms and it is a very agrarian culture. 

After three hours of greenery, all of a sudden in the distance Quebec appeared. 

We crossed over the Ambassador Bridge which parallels the Quebec Bridge. The Quebec Bridge (Pont de Québec in French) is a road, rail and pedestrian bridge across the lower Saint Lawrence River. The project failed twice, at the cost of 88 lives, and took over 30 years to complete. The Quebec Bridge is a riveted steel truss structure and is 3,238 ft long, 95 ft wide, and 341 ft high. Cantilever arms 581 ft long support a 640 ft central structure, for a total span of 1,801 ft, still the longest cantilever bridge span in the world.

Ambassador Bridge (see it stands right next to the older bridge) was completed in 1929. It is the easternmost complete crossing of the Saint Lawrence.

The beauty of the port of Quebec, where our ship is docked. Thank goodness for Nacar, because he truly helped us! We arrived at the dock while the ship was still disembarking the previous cruise. Therefore, they would not take our luggage or even let us into the terminal to sit. Not such a problem for me, but a big issue for my dad. There literally was no bench or even a chair for people with disabilities to sit. Needless to say, I am not shy or quiet. I got a hold of a supervisor who brought a chair out of the terminal for my dad to sit on until I figured out what to do with the luggage and our next steps. Typically we get a wheelchair to bring my dad onto the ship, but we couldn't  even figure out how to secure this, and even worse every Princess representative we asked was equally confused. Each person gave me a different story. There was NO coordination of staff and it seemed like there was a lack of training and familiarity with the process. Why?

Well we learned that this was the FIRST cruise Princess has ever done out of Quebec! So now it makes sense why there was chaos, no signage, disorganization, and confusion. I finally snapped at a representative after waiting over an hour and basically told her I did not know how on earth they can get away with having a check in terminal that has no benches or chairs for people with disabilities. I went as far to say that in the USA this would be illegal. Apparently that struck a chord, and we got to the front of the line and inside. 

Once on board, we settled my dad in the atrium of the ship and then literally ran up to the 15th floor to secure seats in the Sanctuary. The Sanctuary is a more secluded part of the ship, dedicated to adults. It has special service, deck chairs, perks like afternoon tea, without the chaos of loud music and the hustle and bustle of people. However, the ship has 3,500 people on it, and there are about 30 chairs in the sanctuary. You can't pre-book this space. It is a first come first serve sign up basis. Therefore over the years we learned the only way to get these seats is to get on the ship early and process directly to the sanctuary to sign up. Without the Sanctuary, you basically can't get a deck chair as there aren't enough in the regular common areas for the majority of passengers. Fortunately we were successful today.

Next thing to learn about was the new access system on board the ship. It involves using this medallion that hangs off of a lanyard, that goes around your neck. In all the cruises we have been on, this is the first time we were not given a cruise card, but instead this medallion. The medallion serves as your room key, your on board credit card, and it has a gps chip inside so that family members and ship staff can track you down anywhere on the ship.

Though we are living in the technology age, I truly liked less technology on board the ship in the past. But now this is all changing.  I see kiosks on every floor. Screens for people to interact with and even play games while waiting by the elevators or restaurants! Honestly? Do we really need this constant level of stimulation in our lives??? To me this isn't progress! We just can't disengage with the world even on the high seas. It is a real social commentary to me, and not a good one. Especially for young and developing minds. 

Thursday, August 8, 2019

Thursday, August 8, 2019

Tonight's picture was taken in August of 2008, during the first week of Mattie's chemo treatment to be specific. Back then, the Hospital did not have a child life playroom. So the only place to gather and play was in the middle of the hallway. It was definitely not a great space. That day, we worked with child life interns to make this model magic mask. A mask I still have today. Months later the playroom was constructed and opened. It was a God sent to all of us.  






Quote of the day: Our “underground city” has over 18 miles of pedestrian walkways, indoor areas and tunnels linking 10 metro stations, 2 train stations, 2 bus stations, 62 buildings, 7 major hotels, 1,615 apartments, 200 restaurants, 1,700 boutiques, 37 movie theaters and exhibition halls, 2 universities, 1 college and 10,000 indoor parking spaces. ~ tourisme-montreal.org 

I learned one thing today and that is I am never going on Air Canada again. I found their representatives unprofessional, uncaring, and the quality of their planes are decrepit. 

I was supposed to fly from Washington Reagan Airport to Montreal at 11:20am. I got to the airport at 8:30am and experienced one flight delay after the next. Finally boarded the flight at 2:20pm. Mind you there was no explanation for this delay and the airline personnel did not provide us with updates. Thankfully I had text message alerts which helped. 

I chose this flight because it was the only direct flight I could get! Fortunately the flight was about 90 minutes and smooth. 

Negotiating the airport wasn't easy either. Signs were in English and French. After clearing customs (Which was an experience as Canadians and non-Canadians processed through the same lines -- first step was automated. Literally went up to something that looked like a large ipad and scanned in my passport and answered questions on-line), I was faced with what you see in this photo. NOT an escalator but a conveyor belt for people, at a 45 degree angle. How people haven't injured themselves going down this thing is beyond me. 

 I arrived at the hotel at 5pm and met my parents. We are spending the night here and drive bright and early (6:30am) tomorrow to Quebec. Which is about 3 hours away to board a Princess Cruise ship. 

My mom and I walked around for an hour before dinner. Many beautiful sights and was impressed with the amount of green spaces and gardens all around us. 

We visited Marie-Reine-du-Monde Cathedral. It is stunning and reminds me of St. Peter's Basilica in Rome.

The Cathedral is a minor basilica in Montreal, Quebec, Canada, and the seat of the Roman Catholic archdiocese of Montreal. The building is 333 ft in length, 150 ft in width, and a maximum height of 252 ft at the cupola, the diameter of which is 75 ft.

The first architect, Victor Bourgeau, refused the project after studying St. Peter's, claiming that it could not be reproduced on a smaller scale. I understand his hesitation, but the Cathedral is a true work of art and in a way pays homage to its Italian counterpart. 

My maternal grandmother loved visiting churches and lighting candles in memory of loved ones. So today, my mom and I lit a candle for my grandmother and for Mattie. Finding real candles in a church now is a rarity. At least in the USA. It was wonderful to see these candles and be able to celebrate the lives of our loved ones. 

The beauty of the alter. 

The alter at St. Peter's in Rome. See the resemblance?

We walked through Dorchester Square Park. The park itself is beautiful and inviting. Except the fact that large groups of people were all over the park and smoking marijuana. To me that spoiled the experience and made it impossible to sit and enjoy the surroundings. 

I loved this fountain. It looks like it was cut in half, to make it look like a tree. If you look closely, you will see the small woodpecker statue attached to the right side of the fountain (midway up).

There are very large skyscrapers all around and what is noteworthy are the cute garden spaces that surround many of the buildings. It seems like the perfect place to come to during warm weather months during lunch breaks. 

Gardens and green spaces tucked into every street and around buildings. 

The beauty of Montreal at night. The view from my hotel room! Signing off, as I am getting up at 5am. 

Wednesday, August 7, 2019

Wednesday, August 7, 2019

Tonight's picture was taken in August of 2009. By this point we knew that Mattie's situation was terminal. He was having trouble breathing and needed to be constantly on oxygen (as you can see in this photo). Mattie's care team encouraged us to wait until the end of treatment in order for him to apply to the Make a Wish Foundation, for something special. NOT a good plan, as that day of remission never came! Instead, Peter and I went out (with my parent's help) and purchased this ride on vehicle. Mattie always wanted one and it truly made him happy to spend his last couple of weeks on this earth riding and driving. He was a natural driver. I did not know that at first, which was why I was sitting in the passenger seat sticking close just in case. Mattie called this vehicle, "Speedy Red." In fact, I recently learned through Facebook that one of our supporters has a daughter and her daughter (who I never met) wrote a short story about Speedy Red! 


Quote of the day: Expect nothing. Live frugally on surprise. ~ Alice Walker


Out of the blue, I was contacted today by a former researcher at NIH. Peter and I don't work with her often, but we have had the opportunity to interact with her at conferences and at a brainstorming session regarding how to implement the Standards. In any case, to my surprise, she told me that she nominated me for the Ellen Stovall Award. The announcement for the award recipients went out today, and unfortunately I wasn't selected. But I am deeply honored to be nominated, especially given the caliber of the person nominating me. 

The award is given by the National Coalition of Cancer Survivorship (NCCS). NCCS’ mission is to advocate for quality cancer care for all people touched by cancer.  Founded by and for cancer survivors, NCCS created the widely accepted definition of survivorship and defines someone as a cancer survivor from the time of diagnosis and for the balance of life. In fact, NCCS considers caregivers as survivors too. 

The award is named after longtime NCCS CEO Ellen Stovall. Through years of perseverance and dedication, Ellen Stovall was instrumental in improving cancer care delivery for millions of Americans. Her warm personality and infectious drive to create change fueled a movement of collaboration throughout the cancer community to advance cancer care and cancer survivorship. After she died in 2016 due to cardiac complications from her cancer treatment, NCCS created the Stovall Award to honor her memory, carry on her legacy, and ensure the momentum she helped foster continues to benefit patients.

I have always thought of applying for the award, but never have. My gut feeling is that childhood cancer is not in the forefront of the hearts and minds of NCCS. The focus is adult cancer. With that said, I am honored that someone feels that the work we have done for the childhood cancer community is worthy of recognition.  

To learn more about the award and the nomination process, go to:
https://www.canceradvocacy.org/stovall-award/nominations/

Tuesday, August 6, 2019

Tuesday, August 6, 2019 -- Mattie died 515 weeks ago today. 

Tonight's picture was taken on August 6, 2009. I will never forget that day. It was the day after we learned Mattie's cancer had metastasized and therefore his condition became terminal. That day, we had to meet Mattie's doctor in the clinic to learn about next steps. While we met with the doctor, Mattie was surrounded by his art therapists and his nurse Kathleen (who literally came off the in-patient unit to be with Mattie in the outpatient clinic). After our meeting, someone snapped this photo of us as we reconvened with Mattie. Look at how Mattie was staring at us, as he was trying to read our faces and determine what we learned about his condition. We were handed Mattie's art projects from that day and we tried to normalize a very abnormal and toxic day, so as to not frighten Mattie.  


Quote of the day: Cure sometimes, treat often, comfort always. ~ Hippocrates

I wonder if this is a sign? I was walking Sunny and minding my own business. Behind me I heard a woman say... oh what a cute dog! Naturally I turned around and thanked the woman. Since we were waiting at a red light to cross the street, we got to chatting. She said that she wants to rescue a dog too, but has to wait until she completes her dissertation. That may not mean much to someone, but her statement meant a lot to me. I told her I understood as I too wrote a dissertation and I get all too well the hell of surviving a doctoral program. If you think hazing only happens in fraternities, THINK AGAIN! Getting a doctorate requires patience, courage, determination and being POLITICALLY savvy! In fact, I found getting a doctorate so stressful, that once I obtained it, I literally went on the talk circuit to call out the stresses and also to provide students with a how to manual on survival. A manual that was later turned into a book (check out page 3 of the book)!!!:
http://www.universityreaders.com/pdf/Selecting-and-Surviving-a-Doctoral-Program-in-Counseling_sneak_preview.pdf

Turns out this woman's name is Karen. She is getting a Ph.D. from the same school within the George Washington University as I did. We had a lot in common. Though her major isn't mental health counseling, she chose a dissertation topic that frankly is more applicable to my degree than her own. Nonetheless, I applauded her for choosing the topic. What is the topic in a nutshell? It has to do with the stresses associated with a terminal diagnosis. Not on the patient per se, but for the family members. Now here is a topic most people don't talk about! I told her about Mattie, and then bluntly asked her why she chose this topic. I suspected she was dealing with her own loss, and therefore needed to turn that grief somewhere to help others. I was correct, as her dad died and this prompted her study. 

I rarely think back to my times in graduate school or my years after school when I worked hard to advocate for students and to support them in their doctoral programs. Yet meeting Karen this week brought it all back. Sure I may have graduated in 2003, but even 16 years later, the format of a dissertation remains the same, as do the stresses!

Monday, August 5, 2019

Monday, August 5, 2019

Tonight's picture was taken on August 5, 2009. The day we learned that Mattie's diagnosis was terminal. Six weeks off of chemotherapy, Mattie's cancer spread to his lungs, liver, and stomach. Which explained why Mattie couldn't eat or consume  fluid. I also will never forget how Mattie's doctors felt that he was either manipulating me or had a psychological issue. Rather than contending with the reality all along, and that was that the medicine failed him, and his cancer had metastasized. I will never forget taking this photo. We went to the Hospital gardens to get a break from testing and hearing results. It was a snapshot in time, in which it captured the only happy moment we had on August 5, 2009.


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


As today marks the tenth anniversary of Mattie's terminal diagnosis, I thought I would re-post a portion of the message from August 5, 2009's blog. You will find it below. Two things quickly come to mind after reading this posting, and that is 1) Doctors were quick to conclude that Mattie's issues were psychological, when indeed they were really physical. Never listening to my mother's intuition. 
2) The blog was clearly read by hundreds and sometimes thousands of people in any given day while Mattie was in active treatment. So much so that in my message below, I ask that our support community not share with Mattie his terminal diagnosis, until we figured out how to tell him. To me that speaks volumes about the power of the blog! 

Recently I was contacted by a National Cancer Institute researcher. She wants to nominate me to sit on a NIH pediatric cancer solid tumor steering committee. I am hesitant about this because the sole focus will by on medical research. Not that this doesn't interest me, but I think the committee needs to understand what my mission is, before they want to sign me up for this for three years. Certainly I can read about medical trials and provide commentary, but they have to understand my lens will be looking at trials with a social, emotional, and quality of life focus. Let's be honest, the medical treatment for Osteosarcoma hasn't advanced AT ALL since Mattie's death. Medicine is still using drugs from the 1950's and 1960's. Keep in mind that Mattie died almost ten years ago! Pitiful no? Which may help to explain why I choose to spend my time on actively helping children and families HERE AND NOW. Not decades or a lifetime from now. 

--------------Blog Posting from August 5, 2009-----------------

Tonight, I write with a heavy heart to let you know that Mattie's fight is coming to an end. We learned today, after I insisted on an ultrasound and an abdominal CT scan, that Mattie's cancer has spread back to his lungs, as well as his liver and stomach. It is everywhere! This is a fast moving disease in Mattie, because you will remember he had a sternotomy in June, and every known osteo lung tumor was removed at that point. Almost two months later, there are tumors everywhere.

Mattie has been complaining of stomach pain since May. In May, we started running tests for an ulcer, but as many of you know, we did not get the test results back until last week. Part of me wishes we did an ultrasound and abdominal CT scan in May, but then again, that most likely wouldn't have changed the outcome of things. One thing is certain though, I know my son. I stuck to my convictions that something medically was wrong with Mattie and that this was the explanation for him not eating and drinking. This wasn't a psychological issue, and I knew this in my heart of hearts. Clearly today, medical science confirmed what a mother's love knew all along. I just wish medical doctors would listen to us more often! When I called the hospital this morning, they told me they couldn't fit Mattie in today for testing, so I booked an ultrasound for Friday. Then Ann called me and she asked me in a nice way, what I was doing about this scheduling issue? I am not sure if I gave up the will to fight or was just exhausted, since I would have challenged this testing delay in the past. But the more I thought about what Ann was saying, the more I realized I had to mobilize forces and advocate once again to get this testing done today. 

I also want to acknowledge Linda (Mattie's childlife specialist) today. She helped me every step of the way, getting the ultrasound and CT scans done, quickly and timely. After all I did not have appointments for either, we were add ons. But Linda can make anything happen at the hospital, and I can't say enough about how much she means to us.

Today, I fought every step of the way to make sure Mattie not only received an ultrasound, but a CT scan. Mattie's doctors did not feel he needed both, of course, until a large mass was spotted in the ultrasound. So in essence Mattie went through an ultrasound (smoothly thanks to Linda, and his DS player - something he never plays with, but it caught his attention today) first. I started getting very edgy during the ultrasound, because the tech asked Linda what type of cancer Mattie had. I thought that was a telling question to ask during the test and this prompted my immediate attention and concern. I couldn't shake that question all afternoon. After the ultrasound, Mattie and I sat outside the hospital in the rose garden and had lunch. Normally Mattie doesn't want to sit still, but today was different. He had me telling stories about his baby years. I retold the story of how he was born, how he learned to sleep, walk, and talk. None of these things came easy to Mattie, but he learned them, and through these struggles, Mattie and I became very close. When my mom describes Mattie as an extension of me, she isn't kidding! This is a fair assessment! The conversation in the garden today was so special, loving, and priceless moment between us, which I will never forget. Unfortunately this moment, was disturbed when the doctor called to tell me she saw a mass in Mattie's liver, and would need to do a CT scan.

Mattie seemed concerned that he had to take an unscheduled CT scan later this afternoon. He had to drink a contract dye, and then also had to have one injected through his central line. The prospect of the injected dye sent Mattie into a state of anxiety. He did not want to do the test, and it took a great deal of effort and calmness to talk him through the process. Peter left work today, so he was with me, and Linda also came to provide assistance. Linda is great at managing the techs, who clearly need managing. This tech had no empathy or understanding for what Mattie has and continues to go through. She was in fact annoyed that he wasn't complying with her instructions. Linda removed the tech from the room, and I basically had to give Mattie a pep talk so that he would tolerate the test. I told him I knew he was scared, that he did not want to go through the CT scan, but I had confidence he could do it. I told him there is nothing he can't do if he puts his mind to it. He eventually settled down and the test was completed.

When we got home, the doctor called us with the news. She actually did not want to tell me over the phone, but there was NO way I was going to wait until tomorrow. Needless to say, Peter and I are devastated. As you know, I follow the story of Sammie, a young teen with osteosarcoma in California. She too is dying from this hateful disease, and I always marvel how her family is managing and supporting Sammie. I always feared that Mattie was going to die because of the severity of his illness, but to some extent I lived with some hope. Today the hope within me is dead. I do not know how Peter and I will handle Mattie's disease progression and pain, nor do I know how you live without your child? It goes against the laws of nature to see your child suffer and die before you. Part of me is in shock and not in touch with my emotions yet. Which makes writing tonight very difficult.

Peter and I spent the evening sitting in silence and occasionally walking around. Caring for Mattie tonight was truly challenging, since our minds and hearts are racing. Mattie doesn't know about his disease progression. I haven't figured out how to proceed with that, so for now, I would appreciate this not be discussed around Mattie. After all, he gave the fight of his life this year, and now was supposed to be the recovery time. In fact, today, he told me he misses walking, and wants to walk again. This whole day is heart breaking, and I can't get over all we put Mattie through just to get to the point which we most feared. The words of Sloan Kettering come back to haunt me, as they always will. Sloan felt that Mattie's disease should NOT be aggressively treated since he was most likely going to die. Funny, how I thought that perhaps all our efforts could change the course of Mattie's future. What I have learned through all of this is we humans control very little. We only delude ourselves into this false complacency.

Sunday, August 4, 2019

Sunday, August 4, 2019

Tonight's picture was taken on August 8th of 2009. Three days after we learned of Mattie's terminal diagnosis. We were once again in shock, as only six weeks off of chemotherapy, Mattie's cancer spread to his lungs and liver. Mattie always wanted a large ride on vehicle. Of course pre-cancer, my answer was always NO. No because it was huge, we really did not have the space to store the vehicle, the toy was super expensive, and I wasn't sure how much use Mattie would get out of it. However, once cancer was in the picture, not to mention the fact that we knew Mattie was dying, we wanted to fulfill his wish. With my parent's help, we bought Mattie the vehicle. The photo you see here shows Peter taking Mattie out to the deck to surprise him with the gift. The gift that Mattie named later as "Speedy Red." 


Quote of the day: A sunflower field is like a sky with a thousand suns. ~ Corina Abdulahm-Negura

We came back from Boston and were greeted in our commons area with SUNFLOWERS! One of our neighbors loves the fact that we plant and brighten our neighborhood for others. So he took it upon himself in late spring to plant sunflower seeds. He told us about them and frankly I couldn't wait to see what happened, as I LOVE the sunflower. 

Our neighbor took a patch of dirt, that had nothing in it for years, and transformed it for all of us. I don't know how anyone could look at a sunflower and not want to smile. They are like big rays of sunshine.

Check out the bees! They are going to town with these flowers. 

A bed of sunflowers! I think what this illustrates is that YES one person can make a difference. His kind and nurturing gesture has provided a gift to all of us. Where this flower bed is located is truly impossible to care for, because there is NO water spigot nearby. This man fills up gallon sized bottles of water, puts them in a wheeled cart, takes them down the elevator and then outside to water these plants. Practically every other day! A real labor of love.   

The strength of the sunflower stalk is incredible and it has been fun to watch these flowers grow from seed into these beauties. Sunflowers remind me of Mattie and his care community, as I can't tell you how many sunflowers I received while Mattie was in treatment. Perhaps people gave them to me as a symbol of strength, since the flower's stem appears to be formidable and requires this kind of strength to grow out of the ground and then support a huge flower. By analogy, Peter and I had to dig deep within ourselves to find the courage needed to face the daily challenges and horrors of childhood cancer. 

A photo from 2009! A bunch of sunflowers that Team Mattie dropped off to me at our home. 

Sunny with Sunflowers! Seems to go together. 

Saturday, August 3, 2019

Saturday, August 3, 2019

Tonight's picture was taken on August 6, 2008. The day before Mattie's first chemotherapy. Many of Mattie's friends from kindergarten came to the Hospital to visit. I know for some, this visit was overwhelming and they never came back again. I have to give credit to Mattie's child life specialist, Linda, as she set up all sorts of fun kid activities in the hallway, as she knew all too well the importance of these diversions in order to engage children in a positive way during these visits! 


Quote of the day: Prosperity is not without many fears and disasters; and adversity is not without comforts and hopes. ~ Francis Bacon

After a week's long adventure in Boston, we said good-bye to Peter's parents today at around 10am. Our trip up to Boston went smoothly on Monday, with little to no traffic. We were hoping for the same today, but unfortunately we weren't as lucky.  

Trying to get out of Massachusetts was challenging as we were moving at a snail's pace. Early on in the trip, I snapped some photos. This was with Hartford, CT in the distance. 

This was a view from the Henry Hudson Bridge in New York. 

I snapped this photo of the Henry Hudson Parkway in NY. I remember riding on this road with my mom when I was a child. Back then I took ballet lessons in NYC several days a week, so this route brings back memories. 

We journeyed over numerous bridges today, but I am always intrigued by the George Washington Bridge. 

Once over the GW Bridge, traffic began to lighten up in New Jersey. Peter did most of the driving, and I took over for the last two hours, starting in Delaware. 

After 9 hours in the car, we are happy not to be moving! It is amazing the amount of territory (numerous states  visited and traversed) we covered in one week's time!