Mattie Miracle 15th Anniversary Video

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

August 7, 2021

Saturday, August 7, 2021

Saturday, August 7, 2021

Tonight's picture was taken in August of 2002. Mattie was four months old and was sitting on the couch with me. I brought his basket of stuffed animals over and introduced Mattie to them. I did this over and over again the first several months of his life, so Mattie got used to their names, shapes, noises they made, and I could see which ones he gravitated to. For the most part, Mattie was never into stuffed animals. I had several favorite stuffed animals when I was a child, so did Peter. But none of these animals were that important to Mattie. 


Quote of the day: Today's coronavirus update from Johns Hopkins

  • Number of people diagnosed with the virus: 35,730,560
  • Number of people who died from the virus: 616,710



I woke up this morning feeling awful. I was running a low grade fever and had all my tell tale sinus infection signs. But I had to push through it because we rented a Uhaul this weekend to move stuff out of our storage space in our complex. In the basement of our building, our complex has given us free storage for years. Which is greatly appreciated as storage space can be costly to maintain. Over the years we have placed all sorts of things in storage, things that go back twenty years! For example this TV set. This TV goes back to the summer of 1989 when I met Peter at Union College. He actually lent me his TV so I could watch Days of our Lives. A generous fellow, and it is one of those symbols that reminds me of our college days and how we first met. 
This is what the storage space looks like. Tenants pick a spot and literally we store our things together. No one has ever touched our things and in a way this is like a community spot. Can you imagine a place where no locks are needed? This speaks to the character of long term tenants here, we respect each other's things.
This was the spot we chose to store our things over the years. Peter spent hours carting out bins and all sorts of things to the Uhaul. A majority of things belong to the Foundation such as Walk materials like posters, games, walk challenge cups, and so forth. 
We spent about three hours unloading the truck at the house and finding new homes for our Foundation items. 
Meanwhile, I have become the Next Door guru! This very large pool table lamp was left in the basement of the house. We did not want it, so I put advertised it on Next Door for free. Free is the magic word! A woman came to pick it up, so one down!
The former owner left us two large dog crates. Since Sunny isn't crated, I wanted to find good homes for them. So I put it on Next Door today and a woman who works for a rescue organization picked up both of them this afternoon. 
This crate is as big as Sunny! I am so glad they are going to a good home and will help other rescues. But frankly I can't tell you the amount of stuff the former owner left us to clean up! 




This is the next item I put on Next Door. Years ago a friend gave this double bed frame to me. It is lovely, nothing is wrong with it, but I no longer use it and want to find a good home for it. 
In between working hard, we had lunch on the porch. If you look closely, you can see it was pouring. Sunny was on the porch with us and was behaving himself. I think he learned his lesson last week. His digging activity in the rain landed him in the ER last Sunday and then all week, he was kept at home in DC, with low to no activity. 

August 6, 2021

Friday, August 6, 2021

Friday, August 6, 2021

Tonight's picture was taken in August of 2002. Mattie was four months old. Around a month before a friend of mine from college mailed me this large entertainment saucer. At first my reaction was WHAT?! I did not understand why something so large and busy was needed for such a little person. Don't worry I caught on quick! Mattie loved the ability to stand on his own, twirl around in the seat and of course make noise. 


Quote of the day: Today's coronavirus update from Johns Hopkins.

  • Number of people diagnosed with the virus: 35,545,487
  • Number of people who died from the virus: 615,836


Another busy day on the "farm." We had a vanity delivered today for our powder room. The vanity in the photo is the one we gave away for free on Next Door. The catch was someone had to pick it up. It took four men to carry it out of our house, as it is close to 400 pounds. I am thrilled it is gone and we are replacing it with a white vanity. Thankfully Peter is handy and he is installing the sink himself. 

I have been to Bed Bath and Beyond three days in a row. I am trying to get things we will need for the house, which will make moving in a lot easier. Peter and I did a Lowe's run, and then we worked several hours at the house. That horrid wood stain and sealant smell may do me in! It is so bad that even laundry being done at the house smells like wood stain! 


Meanwhile, Sunny has been lying low all week. We followed the vet's advice and gave him his pain meds all week and cut down on physical activity. It paid off, he is definitely on the mend and I know he is looking forward to seeing the backyard this weekend!

August 5, 2021

Thursday, August 5, 2021

Thursday, August 5, 2021

Tonight's picture was taken on August 5 of 2009, the day we learned that Mattie's cancer diagnosis was terminal. By this point, Mattie was off of chemotherapy for only 6 weeks. His doctors thought he would have time to recover, regain his ability to walk, and return to school that Fall. We all knew Mattie's cancer would return at some point, but we did not realize how soon it would be. While off of chemotherapy, Mattie complained of pain and refused to eat or drink anything. He was surviving only on IV fluids, which he received around the clock. His doctors did not want to order more tests, as they felt Mattie was manipulating me, developing an eating disorder, and was addicted to pain meds. Quite a set of mental health issues for a 7 year old! In any case, I demanded tests that day. We started with a more inexpensive one... a sonogram. That did not go well, as I read the techs face immediately. The sonogram led to a CT scan and this confirmed our worst nightmare. Mattie's cancer was in his lungs and abdomen, making his prognosis terminal. While waiting for the results, Mattie and I went to the hospital garden. On the way to that area is this elephant statue, created by the art therapy department. In fact, Mattie's nurse, Kathleen, created a Curious George tile for this elephant that is a tribute to Mattie!

Quote of the day: Today's coronavirus update from Johns Hopkins

  • Number of people diagnosed with the virus: 35,407,683
  • Number of people who died from the virus: 615,215


It seems rather fitting that we officially put in our termination of our lease request today. August 5th is a sad day already for me, but leaving our home of 26 years is right up there for me. The two of these things together are NOT a good combination. 

On certain occasions I re-post 'My Dearest Mattie' letter to the blog. I wrote this letter after Mattie died and shared it at Mattie's celebration of life event. Within the letter it specifically talks about August 5, our trip to the hospital rose garden, and how Mattie found a way to get from his wheelchair into my lap to hear the story about the day he was born. Mattie typically requested to hear that story during tender moments, or during times of uncertainty. He may have been only 7, but he understood the ramifications of that day's testing, and the stress for waiting for results. A day and a boy never to be forgotten.

------------------------

My Dearest Mattie,


It is said that parents love their children right from the moment they are born. However, in your case, our love for you began as soon as we learned we were going to have a baby. In fact, right after seeing your sonogram picture, we felt like proud parents. We posted those pictures everywhere. We shared these pictures with practically anyone who would listen or showed interest, and each September when I taught prenatal development in my undergraduate human development class, out would come your sonogram pictures to illustrate my points. Even my students got a sneak peek at our baby, a baby who would have a profound and meaningful impact on not just his parents but also every community he touched. Daddy and I did not only love you, we FELL IN LOVE with you, and that love grew stronger with each day. Your energy, spirit, love for life, intellectual challenges, sense of humor, and loyalty to your friends and family were only some of the wonderful traits we always admired in you.

This video is a tribute to you and your wonderful, yet short life. It seems fitting as we celebrate you, and say good-bye to your physical presence that I share the story about how you entered the world. The story of your birth had to be one of your most favorite stories to hear, and I found during times when you were reflective, overly tired, or in need of hugs and tenderness, the request for this story arose. In fact, I remember on August 5th, the day we found out that your cancer metastasized everywhere, you and I were sitting in the hospital’s rose garden, and you requested the story. It was almost as if you knew this was going to be a bad day, so in essence we might as well brace ourselves, cuddle, and prepare for this together.

Here is the story I always shared with you. A story Daddy and I will never forget. On April 2, 2002, at 11pm, I decided to head to bed. I was anxiously awaiting your birth, and as your due date approached, I couldn’t help but wonder, when will “the baby” be coming? I was restless and uncomfortable, so while in bed, I began to watch television. I was having trouble concentrating on what I was hearing, mainly because you were kicking up a storm inside of me. At which point, the kicking became so intense, that I literally felt something pop. You clearly wanted OUT, and you were going to kick your way into the world on your terms. Naturally after feeling this pop, I looked down at my tummy, and when I jumped out of bed, I realized my water had broken. This only happens to 25% of moms, and in retrospect, I should have guessed that this was just the beginning of how different our lives were going to be together. I immediately called the doctor and told her what happened. She asked if I was in pain, which I wasn’t, and she instead told me to get a good night’s rest, because my baby was going to be born the following day. Well I can assure you after hearing this news, sleeping was the farthest thing from our minds.

So on April 3, 2002, Daddy and I headed to the hospital and we were admitted to the maternity unit at 8am. The labor process began, but it was a VERY slow process for me, and at times as you moved inside my tummy, Daddy could see your head pushing against my backbone. Needless to say Dr. Mike, the anesthesiologist, became my favorite doctor that day. The hours kept rolling by, and still there was NO sign of our baby! I was getting weaker, I developed an 102 fever, and by 11pm I really had no energy to give birth to you. In addition, to how I was feeling, your oxygen supply was getting cut off, and your chin was positioned in such a way that would make the birthing process almost impossible. So it was at that point that the doctor recommended an emergency c-section. Things began to happen very quickly around me. I was signing paperwork for surgery and Daddy was being transformed by putting on a bunny suit so he could enter the operating room.

I had never been in an operating room before in my life, but I really wasn’t concerned at that point about myself. I was solely focused upon you. I was wide-awake for the c-section, but unable to see the process, which as you know, was probably a good thing. Daddy on the other hand found the whole thing very exciting, and began to videotape and take pictures of the surgery. Literally a team of people surrounded me and I will never forget Dr. Mike, the anesthesiologist who sat by my side, and talked with me and did whatever he could to keep me pain free.

When you have a c-section, your arms are strapped to the operating table, so I couldn’t move, and directly over my head was what appeared to be a rope with a clamp that was holding open my abdominal cavity. Normally by this point I would have passed out, but when it came to you, I developed strength I never knew I had. As the doctor began cutting, and finally got to you, the first thing she said was, “what is this?” That is NOT what you typically hope to hear when having a c-section. The doctor let me know that I had a grapefruit sized tumor on my bladder, and my immediate thought was, did this affect the baby? The next thing I knew, I felt her tugging, and I heard the loudest cry ever. Now here is the part of the story that I know was always your FAVORITE! I would always try to replicate the sound I heard coming from you that day, a sound that will always remain in a parent’s ear. It was a very large WAAHHH! WAAHHH! At which point the doctor told us two things: first, that you were one of the most beautiful babies she had ever seen, and second, that you had quite a set of lungs on you! I concurred with both statements.

The doctor then brought you over to me, and she felt that I needed to be the first person to touch you. So despite my arms strapped to the table, my right hand miraculously reached out and grabbed your tiny, soft, and cute foot. It was a moment I will always cherish, a moment in which I will never forget, and a moment I am so happy you too enjoyed hearing about. Each time I retold the story I felt as if it further bonded us together, and I always enjoyed hearing your comments, thoughts, and reactions to your story.

Seeing you made Daddy very happy! Though he was worried about me, since after the c-section, I had to have bladder surgery to remove the tumor, we both agreed that Daddy should stay with you and accompany you to the nursery. It is there that Daddy got to see you cleaned up, he learned that you weighed 6 pounds and 13 ounces, and that you had high Apgar scores of 8 and 9. Within an instant, Daddy became one of your fiercest protectors, and he cared for you for five days straight while we were in the hospital together. In fact, Daddy is the first person who changed your diaper, and though those were five very challenging days in the hospital, they were days that helped us form our strong family ties. Ties that were imperative and that we relied on for seven years of your life!

Your presence is so greatly missed. Nothing seems the same, is the same, looks, feels, or tastes the same without you in our lives. May you always know that Mommy and Daddy love you, cherish you, and that feeling will remain with us forever and always. Good-bye my Mooshi Moo angel and goodbye Daddy’s best buddy. With love from Una Moon and Daddy!

August 4, 2021

Wednesday, August 4, 2021

Wednesday, August 4, 2021

Tonight's picture was taken in August of 2002. Mattie was four months old and was beginning to eat rice cereal. It was actually something Mattie loved! However, Mattie hated his high chair. So most times I fed him in his car seat or on the couch. He eventually graduated to the high chair, but it wasn't his favorite spot. Most likely because he felt constrained. 


Quote of the day: Today's coronavirus update from Johns Hopkins.

  • Number of people diagnosed with the virus: 35,314,746
  • Number of people who died from the virus: 614,769


It is almost 7pm, and I have been running around all day. Either doing chores, or meeting with contractors. As of today, our wood floors are now done. We can't put rugs or furniture on them for two weeks. The crew returns on Monday to beginning sanding and staining our staircase. I so wish this was all done at one time, but because we were trying to accommodate the painters who were using the stairs, we delayed the process. Therefore, the wood dust and horrid oil sealant smell will remain in our house for the next several weeks. It smells so toxic, it is hard to be in there for long.

Of course, the sanding machine caused divots in the paint. So our lead painter is coming back in about a week to correct these areas. We are making progress, but it isn't fast enough in my book. It is very difficult to focus on our home in DC (which needs to be organized, things need to be donated, and of course I still have to pack up things) when I am managing what is going on at the house daily. I am sick of the 30 minute drive back and forth each day too! I feel chronically tired, migraines daily, and no in the best of moods. 

August 3, 2021

Tuesday, August 3, 2021

Tuesday, August 3, 2021 -- Mattie died 618 weeks ago today. 

Tonight's picture was taken in August of 2003. Mattie was 16 months old and I took him to Los Angeles to visit my parents that summer. That particular day we went to the LA Zoo. I honestly can't remember visiting this Zoo when I lived in California. Mattie introduced me to many activities and places I had never experienced before!


Quote of the day: Today's coronavirus update from Johns Hopkins.

  • Number of people diagnosed with the virus: 35,189,465
  • Number of people who died from the virus: 614,120

For the past week, these metal shelves have been sitting in front of our house. Today I walked over to them and saw they have a FREE sign on them! I asked other neighbors if these shelves were theirs, and then deduced that the shelves belonged to the house next to us which was for sale. The previous family must have carted the shelves to the curb and just left them there! Delightful!

I was tired of seeing them each day, so I literally snapped a photo of them and put them on Next Door for free. Within 25 minutes, someone contacted me and said they would pick them up today! I am not sure why the previous owner did not advertise these shelves? How on earth was someone going to know they were available?

Given I currently live in a complex with over 800 units in Washington, DC, I am used to being the responsible one. For reporting issues, getting involved and helping people, and the list goes on. I was hoping to move into a neighborhood with others like me, but I can see my voice and inserting myself will be needed there too!

Here is another beautiful letter I received from friends after Mattie died. Their daughter and Mattie were in preschool together. Ironically, reading this letter now reminds me of that moment in time. As this family gave Peter and I pedometers after Mattie died. Not much resonated with us after Mattie died, but the pedometers and their message did. They got us out walking, interacting with nature, and the pedometers gave us numerical feedback that we were moving, alive, and part of the world around us. For years, I always had a pedometer on me. I got used to tracking my steps and like the letter below describes, counting my steps empowered me and put me back in control.

--------------------------------

Dear Vicki and Peter,

I have been guilty of being a silent but faithful follower of your blog. Our house has lived the ups and unfortunately too frequent downs of Mattie's courageous battle. We have shared so many tears at our keyboard at the Pisano household thinking and praying for Mattie and you. However, I need to step out beyond being a faceless number of your website visitor counter just to share a story, a gift, and our love for Mattie and you. 

November 23, 1982, is a day I will not forget. It was the Saturday after Thanksgiving. I was 15 years old. My 14 year old sister headed off to basketball practice. She never came back. She died suddenly of a heart aneurysm. My two older brothers and I were shocked. My parents, losing their only daughter, were despondent. She wasn't only my sister, she was my best friend. 

How people grieve and deal with such loss is different for all. My parents, like you, were devastated. I was a sophomore trying to fit into high school and probably repressed a bunch of my sorrow. I wish technology was more advanced (and we had more money) back then and we had the documentation via photos, video, etc to capture her voice, mannerisms, and other aspects that the passage of time cruelly erases from memories. You are so fortunate to have these photos and videos of Mattie for the future. 

My sister's name was Nancy. Hence, when Jane became pregnant I was hoping for a girl to name after my sister. Our daughter Nancy is named after my sister. The naming of Nancy is a little, but important way for me to honor and remember my sister. I miss her as much today as I did 27 years ago but recognize that I can grieve and live at the same time. Your loss brings back so many of the same feelings I have had. 

I am not here to say that everything will be okay in one month, one year, or 10 years. This unbelievable and senseless loss will be with you but it will change to different forms over time. You will get through this. 

We had bought the enclosed pedometers for you in August but never got to you. I think the pedometers are something that can be used by you for some empowerment and fresh air. Basically, you have lived with life seemingly beyond your control. You were reacting and being pushed around by Mattie's cancer. Pedometers empower you. It is you who controls how many steps are going to be on it. Today 1,000 steps. Tomorrow, 1,250. It is something, albeit minor, that at the end of the day is in your control and power. And the beauty of walks, at least for me, is the ability to clear my mind, notice new things outside and develop renewed appreciation for the beautiful and interesting things in life. I haven't included sneakers and mittens but hope the pedometers gives you something to chat about and some challenges for the daily routines you have. 

Again, I am not eloquent enough to find the right words or poetry to capture all that you are facing. Know that the stinging and bitter emotions from the death of a loved one do dissipate over time. Like the ticker in a pedometer, the struggle for understanding and comfort after this loss takes one step at a time. 

Please let Jane and I know if there is anything we can do for you. We look forward to donating to the Mattie Foundation when it is up and running. With most heartfelt wishes, Paul Pisano



August 2, 2021

Monday, August 2, 2021

Monday, August 2, 2021

Tonight's picture was taken in July of 2003. That day we were taking Mattie to see the famous Cape Hatteras Lighthouse in the Outer Banks. Mattie was very excited to be there and to be walking. The majority of children walk by 12 months of age. Not Mattie! He had his own time line for things. So in all reality, when this photo was taken, Mattie hadn't been walking independently for long. Yet by that point he was dragging me along!


Quote of the day: Today's coronavirus update from Johns Hopkins

  • Number of people diagnosed with the virus: 35,106,760
  • Number of people who died from the virus: 613,615


Given the kind of day we had yesterday, on top of the wild month of activity, I felt very debilitated today. Bordering on not functioning. Sunny is still limping but hasn't gotten worse. I do think the gabapentin is helping. The funny thing is I took this nerve pain medication years ago for migraines. For me it did absolutely nothing, I am glad it works for Sunny. It keeps him calm and relaxed, which is necessary otherwise he would want to WALK!!!


This afternoon I went to the house to check on the progress with the floors. Another sealant coat went on the wood today, and sure enough the hateful smell was back full force. I happen to like shinny wood floors, but the company has recommended a satin finish instead of a semi gloss sealant. Mostly because they tell me the higher the gloss coating, the more likely I will see any scratches, especially from Sunny. This is the current look of our family room. 
This is the dining room, and I am beginning to be pleased with the transformation of the house. 
The living room! Which has undergone a massive transformation from its dark brown color. 
This is our front hallway. In about a week, the stairs and banister will be sanded and stained to match the floors. However, the tile in the front hallway has returned to its original ivory tone. When we bought the house the tile instead looked grey and the grout in between was black. Basically very dirty, in need of a good cleaning. 




August 1, 2021

Sunday, August 1, 2021

Sunday, August 1, 2021

Tonight's picture was taken in July of 2003. This was Mattie's first trip to the Outer Banks of North Carolina. That day we took him on a tour of the Currituck Lighthouse. Back then, a child could ride up on a parent's back! It was a hot and humid day and Peter climbed up very narrow and winding steps of the lighthouse with Mattie on his back. Now a days, this wouldn't be allowed! If you don't walk independently, you aren't getting to the top!





Quote of the day: Today's coronavirus update from Johns Hopkins.

  • Number of people diagnosed with the virus: 35,001,589
  • Number of people who died from the virus: 613,223


It was quite the day! Peter and I worked the whole day at the house. While I was cleaning, Sunny was in the backyard. However, it began to rain, and I figured it he should come inside the house, given I know he hates thunder and lightning. However, Sunny's new trick is he doesn't come when called. He wasn't like this in the city, but out in the backyard, he plays tricks with us. Needless to say it was pouring and I wasn't going outside to check where he was. Given he wears a GPS tracker now, I knew he was in the backyard. 

When Peter got home from running to Home Depot, he went looking for Sunny! It turns out that Sunny dug several holes in the dirt and found a way to get under the shed in the backyard. Mind you this is a very small and narrow space, and Sunny is 70 pounds. A big fellow in a small hole. Peter got him out, but Sunny was covered in mud and was limping. He was an absolute mess. Given the fact that Sunny needed knee surgery in April of 2020, I panicked. I figured he injured himself again. 

I called around to all pet emergency rooms. You got to love it, many of them will tell you they are full to capacity and CAN'T help you! Can you imagine a hospital doing this to a human? It shouldn't happen to any live creature who needs immediate medical attention. Any case, I called the center in Vienna who did Sunny's surgery last year and convinced them to see Sunny today on an emergency basis. They ran blood work and took x-rays, $1,200 later, we came home with pain killers and at least have the peace of mind knowing that his blood work is good and he did not break anything. Especially happy to know that the metal plate in his knee is perfectly intact! I am grateful Sunny has pet insurance! We never did this for any of our cats, but when we got Sunny a friend of mine told me pet insurance is VERY needed! She is 100% correct. 

Peter and I got back to DC with Sunny after 10pm. Totally long day and did not go at all like we expected it to!