Once Upon A Time….

Once upon a time I had a Gracie. She was beautiful. She had big blue eyes, dark brown hair, and a smile that could melt your heart. She was a great baby that slept through the night. She loved to cuddle and rock, blow kisses, and loved dancing to music. She giggled at her brother and loved to follow him around copying everything he did. She crawled at 7 months old and was walking before her first birthday. Her first word was mama. She loved her bottle and her binkie and her favorite stuffed animal “bunny”. She loved yogurt and puffs and anything we gave her to eat! She was a good baby. Then she turned 1 year old and was surrounded by her friends and family for a 1st birthday celebration. She blew out her candles, ate some cake and cuddled close to mommy because what we didn’t know was that a very large, scary, deadly tumor was growing in her little body.   A few weeks later she was diagnosed with cancer and our fairytale turned into a nightmare 9 months later when Gracie’s story ended.

It’s 6 years later and here I am sitting in my car outside the damn cemetery. This is where she is. This is where I have to go to “visit” my daughter. I’m sitting here in the car looking through the fence to her grave thinking of her and all she did in her short 21 months with us and am furious that we didn’t get more time with her. I’m so angry that her story ends here and that I don’t get to talk about the terrible two’s, three’s, four’s five’s, six’s and seven’s. I’m even more angry that her story doesn’t continue through her teen and college years or into her adulthood.  It’s cold, the cemetery is locked and I sit in my car staring at her grave through the fence. I see snow covering the ground where she lays and her Christmas tree is frozen to the ground. I can walk in, but right now I can’t move because it’s cold, she’s freezing in the ground, and I’m so darn angry because she’s dead.

January 17th was one of the worst days of my life. It was the day we said our goodbyes to my 21 month old daughter. It was the day she took her last breath. There is absolutely no one in this world who is evil enough to deserve to feel the way we felt that day, the way I feel now. Six years later and I’m still mad, I’m still sad and I still have a lump in my throat and a hole in my heart thinking about what happened to my daughter that day. I miss her terribly and just want to have her back. But as I sit here angry and in tears I know deep down that there is nothing I can do to get her back. January always seems to hit me the hardest and I let it. I reaIize as time passes without my Gracie here that I can’t focus on the negative and sadness everyday, all year long like I am today. There is good in this world. There is Luke and Ava and my friends and family that make everyday a little brighter. I have to let January hit me hard and I have to hit it just as hard back to let my grief out now so that I can focus on the good and my beautiful family the rest of the year. As I sit here in the car and eventually make my way over to her gravestone I will cry, I will be angry, I will think about the horrific images I

still have in my head from that day and I will grieve. When I leave and when January 17th passes I will get myself back together for my family and for myself. Everyone is entitled to a bad day or a bad week like I am having, but we can’t let it define how we live. Gracie was robbed of her life and wasn’t able to continue her story, but that doesn’t mean I shouldn’t. As mad as I am that she is gone, she gives me reason to try to live life to the fullest.

Even though Gracie is not here she continues to teach me a lot about this life we live. Life is definitely a crazy ride and we don’t know what will happen tomorrow. All we do know is nothing is guaranteed so we might as well give it everything we’ve got today. When I think about Gracie and the day she died I know that life is precious. So in memory of Gracie and in memory of so many others whose lives have been cut short let’s live life to the fullest and take time to laugh, listen to music, dance, be happy, cuddle your dog or cat, hug your children A LOT, talk (instead of messaging) your friends, go out to dinner, have people over for dinner, go to the beach, get together with family and friends, have a Sunday funday or Sunday family dinner, eat at the dinner table as a family, go for a hike, travel, do what makes you happy and change it if you’re miserable, GIVE GIVE GIVE to others (this really makes your heart happy), say I love you, and make as many memories as you can.

My personal goal this year is to try to do all those things listed above A LOT and to make as many memories as we can, not only for my family but for the foundation too. After Gracie passed away and I was left with all her toys and clothes I realized that those items were nothing without the person that comes with them. So I’m going to cut back on those material things and spend it on memory making with those I love because those memories are worth more than anything I can buy and will last a lifetime. As I snap out of the sadness that this month brings to me I’m looking forward to our families first memory making trip this year. I will not let January 17th get us down, but instead we will celebrate the day Gracie became an angel by having family time away from home. We will talk about Gracie, we will smile, we will laugh, we will make memories and we will think about all the love our Gracie girl put in our hearts for her and for us to give to others. Happy Angel Birthday, my Gracie Girl.

“The loss you feel when a loved one dies is not the worst feeling in the world. Missing them for the rest of your life is the worst.”

Christmas is the Time to Say I Love You

All is calm and all is bright on this early morning as I sit in my living room with nothing but the Christmas lights and fireplace on. As I write this morning I’m thinking back to my ride home from work this past week. Christmas music was playing and instead of turning the channel I listened and was brought back to our Christmas 7 years ago. Seven years ago was our last Christmas with Gracie. A smile and a feeling of peace and gratitude came over me as the song “Christmas is the time to say I love you” came over the radio. I began thinking about all of the amazing and generous acts of kindness I witnessed during that Christmas. They all brought a big smile to my face and a sense of calmness to my racing, anxiety filled brain and body. A feeling of wonder filled my mind as I thought about who did what and how everyone pulled together to make Christmas 2011 one of the best Christmases we’ve ever had. It wasn’t the best Christmas we ever had because of the number of presents under the tree. It was the best Christmas we ever had because we witnessed the true meaning of Christmas.

It was a time filled with love and generosity that went above and beyond to make us not feel so alone, sad or afraid. That December I was contacted by a group of friends while we were in the hospital with Gracie. They wanted to decorate our house for us so that when we came home from the hospital it was done and we could enjoy it. This group of people managed to get and set up a beautiful tree for us. They didn’t stop there. They took down the 20 plus bins of Christmas decorations from the rafters and decorated our house. They sifted through the many candles and coffee mugs I’ve received over the years from my students and had a good laugh at the fact that I have kept every single one of them! Soon after I received an intervention on “cleaning out“ the many, many, many mugs and candles! These laughs were a welcome distraction at that time! When we got home from the hospital we were treated to a private caroling session on our front lawn from a group of 5th and 6th grade girls and teachers from my school. It was beautiful and brought smiles, tears and tons of love as I looked around at all the people who cared so very much about Gracie and my family. That Christmas we were surprised by many food and gift card drop offs outside our door, as well as gift baskets filled with comfort items for our family. Blankets, board games, snacks, Christmas movies, holiday trinkets to help us get in the spirit of Christmas in our own home. These are just some of the things that happened that Christmas. You see we couldn’t take Gracie out because of her frail condition at that time, but you all brought Christmas to us. You brought the true meaning of Christmas to us. You brought the gift of love, laughter, peace and smiles to our hearts and minds as we were losing our baby girl. As I look back at that Christmas the words to that Christmas song come to my mind again… Christmas is the Time to Say I Love You. I believe that’s what you all did. Seven years later I get it. We all wanted a miracle for Gracie to get better but we could not physically do that. Instead you surrounded us with gifts of love, as Christmas is the time to say I love you. So this Christmas I want you all to know we love you too.

As quick as that smile and feeling of peace comes to me during the holiday season I’ve learned that it can quickly turn into tears and sadness. I miss Gracie. I wonder what Christmas would be like with all three of my kids here. I also feel saddened that there are other families that are facing the same journey as we are. It has been a tough year at Amazing Gracie’s Gift. Some of our families will be spending this Christmas in the hospital. Some are facing their last Christmas with their child. And some are facing their first Christmas without their child here. We have lost Amazing Gracie’s Gift supporters that have been with us since Gracie’s diagnosis and their families are facing their first Christmas without them here. We also have some supporters that are very sick and may be celebrating their last holiday with their family. My heart aches for all these families. But at the same time a smiles crosses my face and my heart skips a beat as I see and hear our community help all these families as much as they can, like they did for us. I see and hear the true meaning of Christmas all around me. I see and hear the gift of love, laughter, prayers, support and kindness for all.

My Christmas wish this year is that we can continue to put smiles on faces, a feeling of peace in minds, and our hearts will continue to give to those who really need it right now. Spend time with your loved ones this Christmas because you don’t know what the next year holds, what next month holds, not even what the next day or minute has in store for us all. And please remember that Christmas is the time to say I love you.

Christmas is the time to say “I love you”
Share the joys of laughter and good cheer
Christmas is the time to say “I love you”
And a feeling that will last all through the year
by Billy Squier

Meet Ava

This beautiful little girl and her family are a good reminder for all that childhood cancer awareness is not just for September. Children are diagnosed with cancer everyday. These children are fighting for their lives everyday. Some of these children made it to remission and some did not. This is why we raise awareness everyday and more importantly take action each and everyday. After receiving Ava and her family’s story this morning I stepped back out of this crazy life of gossip, stress, and worries and reminded myself once again to enjoy and make memories with those we love. Much love to Ava and her family today and always.

“It was a Tuesday. It was the perfect blend of almost summer and sunshine. My girls were 22 months old and 6 months old. Ava, our oldest, wasn’t feeling herself after the 10 days they asked us to give her following her first appointment. She was flushed, weak, and still having trouble walking. The “virus” that they said she probably picked up earlier that month turned out to be a little more serious than they anticipated . We were told going to the ER would help to get the results of scans quicker since it was now almost 430pm. Over the next several hours, a tumor was located in the base of her skull. My girl had no idea what was going on, but we were together so she knew it would be okay. We were admitted to D7 at 11:50pm, after 6 hours in the holding tank known as the pediatric emergency room. We had the clothes on our backs, a juice cup, one extra diaper, a cell phone with a low battery life, and my wallet. We were together and alone, Ava and I.

The next 17 months of our life would center around treatment to cure Neuroblastoma stage IV, a rare and aggressive form of childhood cancer. Only 700 cases per year are diagnosed and only a fraction of those are stage IV. We centered Ava’s life around keeping her a child. We did everything possible to keep her happy, motivated, smiling, engaged, and thriving. We used speech, music, and occupational therapy professionally but the real therapy required no assistance from outside sources.

We played; finger paints, puzzle stations, markers, sticker art on skin, glow sticks before bed, placing trinkets in varied sized cups, dance parties, water table fun, bubble foam at bath time, bubbles, tea parties. As a mother of a child with pediatric cancer, my full time job became play. I would do whatever necessary to provide my daughter real life in a world which did not allow for her to be exposed to other children, public facilities, or even the outside at times. Fear of sunburn from radiation, fear of infection when immunocompromised, and fear of bruising or bleeding from low counts pushed PLAY into over drive. Ava was always inspired, active, and full of spontaneous play. What she lacked was fun time with her sister, because treatment often did not allow for togetherness.

One summer day at clinic, the Child Life team shared that Ava would be a recipient of Amazing Gracie’s Gift. I didn’t know what that meant, but tears instantly started pouring from my eyes like a faucet. As the foundation was explained, I instantly knew what our gift could be if it was possible. We wanted to get the girls something for them to play with together, but fear of a financial commitment when we had so many other “unknowns” in treatment was scary. Our wish for our daughters was a playhouse. A few weeks later, we had a very large package on our porch with a few other items for our girls. Later that night, the playhouse was set up.

Normally, these types of houses are for outside. But for our girls, we wanted to encourage year round togetherness through all the stages of upcoming treatment. Addalyn, who was only 6 months at Ava’s diagnosis, was now walking (and running for that matter). So here it sits, in my kitchen, large and in charge. It is full of play food, chairs, books, stuffed animals, and beautiful memories.

Ava passed away on September 16, 2017. About 6 weeks ago, my daughters were playing in this playhouse together. This gift from the foundation is more than just a toy. It was the gift of memories. A gift of seeing the joy in Ava’s eyes as she play with her sister. It is a gift of a very warm sensation in my heart, knowing that my daughter lived a life full of fun during her 3 short years. This gift to our children carries beautiful reminders to us as little sister eats her snack in the house and fills her basket with play food. When she opens the windows and looks out, I remember her opening them and looking out at her sister giggling. When I hear the door bell on the house, I remember Ava standing inside and opening the door for her sister to come in. My girls. Always so gentle and full of love.

Saying cancer is hard is an understatement. It takes over the entire dynamic of a family. It forces siblings to be apart from one another. It forces parents to allocate attention to saving the life of their child. Parents, grandparents, aunts, uncles, family friends all help to ensure that the needs of the healthy child remain a priority. The healthy child often gets lost in the shuffle. Our gift was for both of our girls. The memories that Amazing Gracie’s Gift was able to give us will literally carry us through this very difficult time in our cancer journey. Having such extra wonderful memories stare at us each morning while we drink our coffee, or while we cry in private at night while Addalyn sleeps, gives us such comfort. We will forever be grateful for the love we were shown through this foundation. And I, as the quarterback and mother of a child fighting cancer, will forever be grateful for my new friendship with Lisa & Geoff and the legacy that they carry on for their sweet Grace.”

With Gratitude,

Ava’s mom
Leanne Baker

One.day.at.a.Time

Meet Amelia

Meet beautiful Amelia! This little girl’s smile is contagious! We are thrilled that Amelia is doing so well and that we were able to help her family during one of the most difficult times in their life. Meet our AMAZING kid of the week, Amelia!

“My name is Melissa Ann MacNeil Spencer. I am given many titles on a daily basis: friend, foe, wife, Respiratory Therapist, student, sister (twin), teacher, daughter, confidant…only to name a select few. However, these titles come and go more frequently than the seasons do change.

There is only one title I have taken on as my own permanent identity with the highest of pride and honor during my delightful stay thus far on this beautiful, green Earth…MOTHER. I am a mother. I am a mother of two amazingly beautiful and happy children. Hayden and Amelia, ages 8 and 4, respectively. It was a title imprinted on my soul on both April 29, 2009 and March 9, 2013 without written or bedside consent. I became an infinitesimally better woman both days I gave birth to such delightful beings. It was a title given free of lessons and free of knowledge of what is to come. A title given to a few select women who are brave enough to carry its beauties and its terrors. It is a title I carry with the greatest of honor. I sacrificed everything I had and was to bring them into this world: my life, my freedom, my own selfish identity, my body; and will sacrifice everything I have and am to keep them in this world as long as I am possibly given the chance.

My youngest baby, Amelia, had been fighting symptoms for a few months late last year that confounded many of us and exhausted many sleepless and painful nights in their agony to understand what brings her such screams of agony. We brought her to the clinic multiple times without any form of real diagnosis and one day her pediatrician suggested a head MRI, which my husband and I both thought was inappropriate due to all of her symptoms being mainly gastric up to that point. Yet, we agreed and waited very impatiently for 2 weeks to get the imaging done.

Amelia was diagnosed with a very large mass in her brain by MRI on the worst-day-of-my-life October 21, 2016. What started as a G.I. confusion, swiftly became a neurologic condemnation. My family quickly became aware of the terrors unseen horrors can bring in the blink of an eye. My brother-by-marriage, Matt Spencer, given the duty of Reader-of-Amelia’s-Destiny, was the first person to understand the significance of the tragedy that lay ahead for myself; husband, Lucas; sisters, Jen and Christina; grandparents, Pat, Ted, Mark, Penni, Barbara, and Rick; pediatricians Phil Heavner and Anna Gadomski; closest of friends and colleagues; coworkers in both ICU and Respiratory Care; and many other lives Amelia touches on a day-to-day basis and those who saw first-hand our struggle that morning with tears and defeat in our eyes as we wandered through the corridors we walk on a regular basis in search of the embrace of a child too young to understand the miseries to come. It was a tragedy and sadness for anyone who knows this beautiful child.

I am all too awe-stricken by the swiftness in which everything was coordinated upon the news of Amelia’s misfortune. Within the matter of hours we were already on the road to from Cooperstown to Rochester to meet with the Chief of Pediatric Neurosurgery and a Pediatric Oncologist to decide the all-too-necessary events to alleviate the pressure and size of the mass within her head. Surgery was already scheduled for the following week before we were even packed, and could be squeezed in quicker if her symptoms decide otherwise.

Amelia has since had 2 surgeries, 3 rounds of induction chemotherapy, 6 weeks of radiation, and 3 rounds of consolidation chemotherapy. Her MRI’s have all been clear since the 2nd surgery, without a hint of metastases, and we return to Rochester next week for all of her completion of treatment testing and MRI, so we are hoping for the continued disappearance of any abnormal cells and for remission to be a permanent condition. She started preschool this past week and is a thriving, active, and happy little girl. Her resilience through everything she has been through is inspiring to all who are lucky enough to know her.

It is times of such agony that I am reminded of the beauties I am surrounded by every day. On that horrific morning of diagnosis, I was and am so grateful for the MRI staff, the Gods of Anesthesia that kept my baby safe -sedated and intubated- during her scan, the family of nurses who walked by and smiled at her as she unknowingly awaited her moment of fate, the Respiratory Care family that texted me at 5 am as I made my coffee unknowingly headed toward my day from hell, the highly-esteemed physician who stopped and gave hugs, knowing that was all he could do seeing the looks of despair in our eyes as he met us unknowingly in the hallway. The kind acts done through this entire nightmarish process, from caring for my best friend Donkey (our faithful pup) to sending care packages for the kids’ car rides back and forth to Rochester, to the mass quantities of texts, emails and calls since then that have been overwhelming and beautiful in their search for help and sympathy in a time so ugly by anyone touched by its tragedy and to monetary help in a time when working was near impossible.

This is how Amazing Gracie’s Gift helped us. Amelia was too old to be given the “trip of a lifetime” as she was diagnosed at age 3, but Lisa was very determined to help us, hunting me down when all I could cope with and handle doing was getting out of bed each morning, and the foundation sent us a check for $2000 to help with any kind of expenses needed to help with her treatment. This and many donations given to our family during this tragic time helped us focus on getting Amelia better rather than having to worry about work and finances. We will forever be grateful for the alleviated stress Amazing Gracie’s Gift has afforded us and they will be forever in our prayers. THANK YOU SO MUCH!”

Meet Jacinto

Meet Jacinto! This beautiful little boy has been battling cancer since he was 2 months old. His story will bring tears to your eyes, but his smile will warm your heart. Meet our amazing kid of the weekend, Jacinto!

“On December 7th my son had turned 2 months old and he was very sick and puking everywhere. His eyes started down shadowing as well. That is the day that changed our whole world. I took Jacinto to Albany Medical Center. They couldn’t figure out what was wrong at first. Then they did an MRI and told me he had a brain tumor. It didn’t hit at all. They told me they had to admit him and they had to take him down for an emergency surgery. As we were walking down and I was getting ready to put him on the bed it hit me and I couldn’t help but cry. I didn’t understand. What do they mean he has a tumor? Is it cancerous or isn’t it? I had a lot of questions in my mind. They took him in and placed an EVD to relieve some of the pressure. The doctor told me we had just made it in time. About a week later he had a biopsy done and 2 days later it came back that he had atypical teratoid rhabdoid tumor. Stacey Porter was with me that day and I asked her what will happen. She told me it was cancer and she doesn’t know, but they are willing to try to cure him. Hearing all of this was very hard. Why does my baby have cancer? He doesn’t deserve this. Why him? He’s so innocent. A few days later they had made a plan to start chemotherapy. This meant he would be in the hospital for Christmas. They took him to surgery on December 15 to have a shunt placed and then sent him over to general pediatrics a few days later for chemotherapy. Chemotherapy was hard. Being a parent and seeing your child suffer and not being able to do anything about it is hard. He had 2 rounds of high dose chemotherapy which shrank his tumor. From there we were sent for his stem cell collecting in Delaware for a week. We also had an initial visit at Montefoire Children’s Hospital because that is where he would have his stem cells. From there we came back to Albany Med where he had surgery. The surgery was 10 hours long and boy did it feel like forever. I didn’t know what was going on and I thank god for that surgeon. He was able to get the whole tumor out. A few days later we were told our son was blind and he had lost feeling of his right side. He didn’t move his right side for days. It hurt to hear my son went blind from all this and that he couldn’t move. A few days later we felt like he could see something and he started moving his right side a little. We left and went to Monetefoire Children’s Hospital for stem cells. We were only there a week before hearing our little boy relapsed. We came back to find he had another tumor. They went in again and managed to get 80 percent of the tumor. The next day the doctors pulled us aside and told us that our sons chances of surviving are low and because it came back and just keeps spreading his chances are really low. They gave us an option to try more chemotherapy or to just let the cancer take its course. I was crying. I looked at how he was so happy and decided we wanted to try more chemotherapy. From there he was out patient for about 2 months and did 2 rounds of chemotherapy. We did an MRI at the end and found out his tumors shrank. There was 2 on each side of his head that were 1cm. We were told he would have to do multiple surgeries to remove them and it may be a lot but we didn’t care. He went to surgery and they removed what they had saw on the MRI and luckily it was a lot of scar tissue. He went back in a second time and did 7 biopsies. All were negative and they removed what they saw on the left side of his brain. They never had to do the right side. After these surgeries, Jacinto got a shunt infection and they had to remove his shunt for 3 weeks. They placed his shunt back in and he was sent to Children’s Hospital in Rochester where he has just finished his first round of stem cells. He did amazing! He still has 2 more to go and I’m praying he does the same as he did this time. He has gone through 20 surgeries all together. He is only 10 months old and to go through all of this is a lot. At this time Jacinto can only lift his head. He can not sit and he can not eat. He can not walk or do anything that he should be able to do at 10 months old. This boy is my hero and he shows me a different part of life. When you look at him all your troubles go away. I am glad this little boy is mine and I am glad he is so strong. It makes all of us stronger.”
#Falconstrong
#Teamjacinto

Mya

Meet Mya! Mya is 14 months old and has been through more than you can ever imagine. This little girl is so loved by her mom and dad and her 4 older sisters, as well as the many people praying for her. This past fall we helped plan a wish for Mya and her family. This trip was so fun to plan and also very meaningful as each sister picked a place they wanted to visit with Mya and their family. I believe it was a trip full of memories that will last a lifetime! Mya, keep fighting baby girl and know that you are AMAZING!

Mother’s Day 2016 was a day my husband Steve and I will never forget, the day I delivered Mya, our fifth and final daughter. Our family was complete, Steve and I could not have been happier. Mya’s first three months went by fast but smooth. After a week of what we thought was the stomach bug, two trips to the Emergency room and one to her doctor, we were devastated to find out that Mya has cancer. Cancer? How does a 3 month old have cancer? We were admitted to Upstate Golisano Children’s Hospital for further testing. A few days later it was discovered that Mya had AML (acute myeloid leukemia), and it was a subtype with a very poor prognosis and she would need a bone marrow transplant. Mya and I spent most of the next four months in Golisano for three rounds of induction chemotherapy. While Steve had to stay home because of work and to take care of Mya’s older sisters. We were fortunate that one of her sisters was a perfect match for the transplant.

December 6th, 2016 we made the trip to Philadelphia. December 16th was the big day, transplant day. The day where one of my daughters saved my other daughters life. We spent 81 days in Philadelphia, which brought our total to almost 7 months of Mya being away from her daddy and sisters. I don’t know if there was anything more exciting than the drive home from Philadelphia, our family was finally going to be together under one roof.

Unfortunately, less than 24 hours after we got home, her oncologist called to tell us that the bone marrow biopsy that they had done before we left showed signs of cancer, she had already relapsed. We were told to stop all of her anti-rejection drugs, and her only chance of survival was for her sister’s cells to take over and kill the cancer. As it is way too soon for more chemo. It took almost two months, but her sister’s cells did in fact win, and she was back in remission. Our family was together, Mya was flourishing, crawling and starting to walk, eating and drinking and was finally a normal baby. Until June 26th, the dreaded day we found out she relapsed, and not a mild relapse this time, her body had been completely taken back over by the leukemia. Our options were limited, her body wasn’t ready and couldn’t survive aggressive chemo, Mya was terminal. Our options were palliative chemo to keep her comfortable and buy us as much time as possible, or make her comfortable for her remaining few days left on earth. Two days later we were readmitted to Upstate Golisano to have a port placed and to start palliative chemo. We were all devastated, Steve and I decided to make a bucket list with our girls, something they all wanted to do with Mya. We had no idea how we were going to afford it, as it had been almost a year since I was able to work, and though Steve was able to keep us afloat for the last year, we didn’t have anything left over for vacation. Mya was too young for Make-a-Wish. That is where Amazing Gracie’s Gift saved the day. Lisa reached out to us and said that they wanted to make our dreams come true. That every family deserved the best memories. She told us to plan our dream vacation and she would make it happen. She did not disappoint. Our family was able to go to Sesame Place, the Philadelphia zoo, the Adventure Aquarium and Crayola Experience. Our girls had a long weekend of stress free, cancer free, hospital free fun with Mya. We got to see Mya on a tube in the lazy river, we ate dinner and had a meet and greet with all the Sesame characters, we got to hear her bark at every animal at the zoo and aquarium, we got to have our own coloring book pages made with Mya’s picture. We had a perfect vacation. Because of Amazing Gracie’s Gift, Steve and I were able to spoil our girls, thank them for helping us survive the last year, and we got to make memories that will last a lifetime. Thank you again to everyone involved with Amazing Gracie’s Gift, I hope you all know what you mean to families like us!

Hakuna Matata

Happy summer! I cannot believe that it is August and summer is almost over! I know I’m a teacher and I have 2 months off….but that is far from the truth! Every morning while get ready for the day I think about what I want to write in my blog this month, and then the day begins and there is not one free minute! Life is very busy with a 9 year old, a one year old and running a foundation, as well as continued thoughts of my deceased child. She may not be here physically but she’s always in my heart and on my mind and she also requires and deserves time throughout my day.
So this morning while getting ready I promised myself that I would sit down and write while Ava is sleeping, Luke is busy looking at fidget spinners (lol) and I don’t have to work or have any plans for the day!

So although this summer has been great, it did start out rough. Geoff’s dad and our kids papa passed away Memorial Day weekend after battling cancer. I know what you’re thinking…cancer in our family again. I hate that word. I hate this disease. I hate that cancer took our daughter and now our children’s Papa. Plain and simple- Cancer sucks. It’s been a summer of changes, trying to navigate and figure out this world without this man in our lives. I will say my husband’s family is very strong and positive, but things will never be the same and are a little different without Ken around. Ken was a great father, Papa, and friend. He was an honest, hard-working man that would help anyone at the drop of a hat. I am grateful that he has instilled his morals and values into his family, my husband and his grandkids. For this I am forever grateful to him.

Ken loved spending time with his family and that’s just what we did and are doing this summer. We spent some much needed time this summer doing something very simple- camping as a family. We spent a month camping at Brennan Beach on Lake Ontario for the month of July. It was relaxing, fun and we made great memories as a family and with our friends. The simplicity of it made it that much more memorable… campfires, swimming, beach, pool, fishing, baseball, corn hole, sea glass hunting, family/friend dinners, conversations with no tv, laughs, laughs and more laughs. It was a month full of memories that will last a lifetime. Each night we would walk down to the beach to watch the sunset (BTW Lake Ontario has THE most beautiful sunsets) and Luke would go off sea glass hunting and I would be chasing down Ava as she wanted to run around the beach. One night this woman was watching us and she came up to me and commented on how beautiful Ava’s big blue eyes were. Then she asked the dreaded question….How many kids do you have? I’m ashamed for saying dreaded. I really don’t mind the question, but it always makes me stop and think and tear up just a little. I’m proud to say I have 3 kids, I just wish all three were running around. I hesitantly said 3 kids knowing I was going to have to explain where the 3rd one was and she quickly caught on to my hesitation and laughed thinking I was burnt out with 3 children. That’s when the conversation changes. I quickly said my middle child had passed away with tears under my sunglasses. She immediately responded with “Im so sorry” and went on to ask how old my kids were. I started in chronological order and when I got to Gracie I stumbled, luckily my friend was standing there and said Gracie would be 7 and helped me finish the conversation. Seven… I couldn’t get that out of my mind. I haven’t seen her since she was 21 months old. How could my baby be seven? And how amazing is it that my friends can step in and finish a conversation for me with accurate facts of my daughter after she’s been gone for so long?! Almost every night we watched that sunset, almost every night someone commented on Ava’s eyes and every night I remembered my other blue-eyed baby girl. When it was time for bed each night we would pop in a movie. I have no idea how this happened, as I haven’t seen this movie around in quite some time, but Lion King was the movie chosen each night. Lion King was Gracie’s favorite movie and brings back some awesome memories of when we went camping with her at Daggett Lake- Rosie’s Love. Gracie loved that movie and loved the songs “I just can’t wait to be King” and “Hakuna Matata”. She would dance around to Hakuna Matata all the time. Each night while putting Ava to bed I would sit and listen to those words… “It means No Worries for the rest of your days… it’s a problem free, philosophy.. hakuna matata” and promised myself to live up to those words each day on our vacation and I think we did! One night a bunch of the kids were in the camper with us when it was on and they were all singing it and I couldn’t stop smiling as it was so wonderful to have such happiness around. I was very thankful for this great month.

July was a wonderful month…camping with friends, family wedding, spending time with cousins, and planning a memory making trip for a local family whose 1 year old daughter is on palliative chemo. It was such an honor to be able to help this family plan and carry out a trip with their family that created memories that will last a lifetime. The whole time we were planning this trip I thought of our Gracie and about how this is exactly why and what we started the foundation for. I hate the reason why we do what we do and that other families have to go through what we went through, but am happy that we can do this for others because of this foundation and its support. Many, many prayers, positive thoughts and wishes for miracles for this family. Hakuna Matata to them <3

Overall I’m sad to see July go, but August brought a very important, humbling day for our family and the foundation. Amazing Gracie’s Gift went out to Albany for our annual backpack event. We went to Albany Med and to the Ronald McDonald House to bring school supplies to patients and their family members so that mom and dad could check one thing off the “to do” list and not worry about how and when they were going to get this chore done while their child and family were going through some tough times. We started out at the clinic that Gracie visited so many times before she passed away. When you spend the majority of your child’s life in certain places they begin to be like your second home. When we walked into clinic with our supplies I immediately felt a little closer to Gracie and also felt at home. It’s been many years since we were there with Gracie, but to me things have not changed. There are still kids running around with IV poles, nurses getting vitals, the “payment” window, the playroom, parents watching their children play and waiting anxiously for their child’s levels and report from the doctor, doctors with that white sheet in their hands with their patients levels on them, social workers playing with the kids and talking to the parents…it all brings back so many memories. The people who work in clinic are angels. They are full of energy and send out positive vibes to all who are there. They are simply amazing. While helping kids pick and fill their backpack I was very “in tune” to what was going on around me. I could tell which families were getting good news and were going home feeling positive and I could tell which families were going to or have gotten bad news. Unfortunately we have been there and done that and even though it was 5 years ago I still know exactly what’s going on by just being there and watching. I left the hospital with tears as one mom told me her wish is to have her child be pain free and as I watched another family wait for their child’s report and scan results, knowing the uneasiness and anxiety that comes with that appointment.

After we left the hospital we headed to The Ronald McDonald House to host another Backpack Event. The minute you walk in this house you feel the love! It is loud, happy, full of kids, toys, activities, food and tons of support, love and laughter. If you need to smile head to The Ronald House in Albany and volunteer some time. They are always so appreciative and friendly. Here I met some wonderful families and kids who are going through some pretty rough times with smiles on their faces. I had the opportunity to sit down with one girl at the house after everyone left and hear her story and just talk with her. She is 18 years old and is dying. She has cancer. She is soft spoken, beautiful, strong, very humble and so very appreciative of everything around her. She told me her story and asked me to talk about Gracie. When she left I looked at Debbie, cried and said I couldn’t believe this was happening. I also couldn’t believe that roles were reversed at one time. We were that family sitting there almost 6 years ago about to lose our daughter. Sometimes it doesn’t seem like it was real.

On our way home from the backpack events I sat in the back, was quiet and had tears in my eyes the whole time. Happy tears and sad tears. Sad tears over the diagnosis of some of the patients I met, sad to know some parents were getting bad news that day, sad that the girl I met is dying, sad that Gracie isn’t here, sad that we were once that family, sad that cancer even exists, and sad that this was the first year that Ken was not there to be at one of his favorite events. But I also had happy tears. Happy tears that we were able to put smiles on so many kids faces this day, happy to hear kids laughing, happy to be able to go and support these families and kids, happy that our kids-Luke, Lawton and David were so grown up, mature, well behaved and helpful at the RMH, happy we there and doing this event in Gracie’s memory and honor, happy we were doing this in memory of Ken too as he loved this day, happy we’ve had a great summer, happy we have more memories to make this summer, happy a new niece will be added to the family this month and happy as I thought of the words to hakuna matata…. “It means no worries for the rest of your days”…. As that is what I witnessed from some wonderful families in Albany.

I know this was a long, rambling blog, but in my defense I haven’t written in a long time! Enjoy the rest of your summer, make some great memories, put smiles on others faces, support Amazing Gracie’s Gift and childhood cancer month in September and live the rest of your summer with no worries! Please help me wish Hakuna Matata and love to all of our families!
Hakunan Matata to all of you!!

6th Annual Golf Tournament

Welcome to the 6th Annual Amazing Gracie’s Golf Scramble! Over the past 6 years we’ve experienced just about every kind of weather you can imagine at our golf tournament. We’ve had sun, clouds, rain, fog, wind, and even snow, it’s also been pretty cold, super hot, and also very pleasant. Today we were faced with not the greatest weather conditions, but really no matter what the weather has been the participants always have smiles on their faces and love in their heart for our foundation.

I can’t believe what this foundation and all of our supporters have helped us accomplish in the past 6 years, it’s absolutely amazing:

  • First let me start with today. I’m not sure if you realize how amazing today has been: Today we had over 160 golfers, over 20 volunteers, over 100 donations from some amazing people and businesses, and sponsorships totaling over $11,000 before the tournament even began!
  • Because of our increase in sponsorships, donations and grants over these 6 years we have now expanded our services and events from Albany to Syracuse. Which means we are able to directly impact and help many more families who are struggling emotionally and financially with their child’s diagnosis. To date we have helped over 300 families through our Easter and Spring basket events at Albany Med and Golisano, our backpack event at the RMH, countless gifts and volunteer hours to the hospitals and RMH and by individual financial assistance or memory making vacations.
    Not only have we accomplished so much, but along the way I’ve learned a few things on our golf day. In our 6 years of golfing I’ve realized
  • Just how fun it is to drive a golf cart! Who doesn’t love zipping around in a little white box with no speed limit, no lanes to drive in and the wind blowing in your face. Especially when you’re cruising along with your friends, a cold drink and the sun in your face. Which brings me to my next point…
  • Each year I’ve also started to realize why men golf so often. It is truly the best kept men’s secret there is. They might act like it’s no fun and they have to go golfing again for this or that, but once I got out on the course I realized what a blast it is! Who wouldn’t want to have a day all to yourself with your friends, a cold drink and lots of laughs? Sorry guys, the secret is out!
  • 6 years later my team has finally figured out that we should be golfing with a foursome and more than 1 set of golf clubs and we should prob. at least try to golf all 18 holes! If you ever get stuck behind us or see us out on the course you will most likely get a good laugh from us, but that’s what today is about, right?
  • But most importantly I loved seeing all of your smiles, hearing the laughter and watching the great interactions of all the people in the tournament that have traveled from near and far.

Over the years I have also realized that we are not here for Gracie, but instead we are here in memory of Gracie. She touched all our lives in one way or another and we are paying it forward by being amazing in memory of her. What we are here for today is the kids who are battling cancer or a life threatening illness. We are here to support them, both emotionally and financially. The giving hearts of all the people in this pavilion/room and all those who couldn’t be here today continue to amaze us by helping us achieve this goal.
Each year I state our motto and I ask you to be amazing. So without further ado…

  • Be Amazing like Ronnie Pizer and his family. His family of 7 was rocked to the core when last year on May 27th Ronnie was diagnosed with a Wilms tumor in his kidney. The everyday normalcy of life took a turn with this diagnosis. Ronnie and his family were going to have to spend many, many months traveling back and forth to the hospital for Ronnie to receive 19 rounds of chemotherapy and surgery. As you can imagine this was a very scary time for the family with lots of ups and downs, but today we are happy to report that Ronnie is in remission and is Cancer Free! Ronnie’s family can you please stand up.
  • Be Amazing like Lilliana. Lilliana was diagnosed May 31st last year with T-cell acute lymphoblastic leukemia. With this diagnosis another family was shaken to the core and life was about to change for them. But Lilliana and her mom were ready for the fight. Through all of the tears, procedures, hospital visits and stays Lilliana has been very brave and Lilliana’s brave mommy has been by her side through it all. They also have traveled the long road back and forth many many times to Syracuse. Lilliana has had so many chemo treatments we’ve lost count, she has had 9 hospital stays over the past year, and has had many ups and downs. Lilliana is an amazingly strong little girl that never gives up and neither does her mom. Today we are happy to report that Lilliana is in remission but her treatments will continue and hopefully end in 2018. So let’s keep Lilliana in our thoughts and prayers… Lilliana and Jaime can you please stand up.
    • Because of all of you Amazing Gracie’s Gift has been able to help support both of these families! Ronnie’s family just went on a memory making trip in February and Lilliana will be taking her memory making trip this summer.

I also want to remember some of our other families and places too:

  • Be Amazing like the RMH of Albany. A place that provides comfort, hope, love, and support for so many families. The RMH now has more room for love in their new house and can hold up to 25 families. One of those rooms was built in Gracie’s name. It is beautiful, warm, comforting and totally amazing.
  • Be Amazing like Garrett who is a few months old and just had a life saving liver transplant.
  • Be Amazing like Amelia who is 3 ½ years old and has been diagnosed with brain cancer.
  • Be Amazing like 5 year old Jackson who has had some major GI surgeries and has been enduring pain for quite some time.
  • Be Amazing like Kelsey, who is 2 ½ years old and is fighting cancer.
  • Be Amazing like Landon who is 12 years old and has heart failure.
  • Be Amazing today and always for all the kids who are suffering and for all the kids who have lost the fight.
  • And lastly, my motto and what keeps me going on a daily basis – Be Amazing like Gracie.

Thank you for the past six years. Let’s keep it going and make it to 10 years!

Dear Birthday Girl…

Dear Birthday Girl,
Happy 7th birthday, Gracie! 2,553 days ago you were born. It was a quiet, but amazing day. You were a planned section and everything went smooth and easy. I went into the hospital around 9am and had you in my arms by 12:30 pm. I felt great and you were just perfect. You arrived with dark brown hair that was already styled into a Mohawk, big blue eyes and the most perfect lips. I remember that day like it was yesterday and on your 7th birthday I imagined myself telling you your “birth” story. But plans changed and instead of telling you face to face I now must write my thoughts down and hope you hear them. I’m thinking you do as I’ve had lots of signs from you lately, signs that I didn’t realize or didn’t pay attention to. Signs that were meant to remind me to slow down, don’t be so grumpy and enjoy life a little more. This often happens as April approaches and your birthday draws near. I avoid thinking about your birthday because it makes me sad to know you’re not here to celebrate it with us. There isn’t a day that goes by that I don’t think of you, but lately I haven’t truly paid attention to your signs. I see or hear them and I break down for a few minutes and force myself to move on quickly because there is “too much to do”.

The last few weeks have been busy at work, at home and for the foundation, juggling the kids school, daycare, and sports schedules, keeping up the housework, flooding in the basement, report cards, lesson plans, progress notes, CSE meetings, cleaning and packing my classroom, the huge undertaking of planning and getting donations for the golf tourney, board meetings, Easter/Spring Event planning, buying and organizing for 2 hospitals, shopping and packing for our trip… I was drowning! Throughout all of this you were sending me little signs – bunnies, bunnies and more bunnies-lol, and other little things too that I now realized went unnoticed. I’m ashamed to say that when I saw or heard them, I brushed it aside because there was “too much to do”.

Gracie, why do so many of us in this world get so bogged down with so many things that we forget what’s important? I can only hope that wherever you are this doesn’t happen. I am guilty of taking on too much sometimes. Look at all the stuff I listed above, do you see anywhere “spend time with kids, play with kids, talk to kids, eat dinner at the table with the family”? It seems like those should have been first on my list of “to do” things and they weren’t. And I’m sorry for that. In this life we keep doing more and more and forget what’s most important, I of all people should know that! But it’s so easy to get carried away with things and sometimes it’s your signs that bring me back down to reality.

It was this past weekend at our Albany Med Easter Event that everything hit me. We walked in and first thing I saw was a picture of you and the second thing I saw was one of your favorite nurses, Tina. I was totally surprised, as I didn’t know she would be there. We hugged and as I hugged her, your picture was staring at me, and that’s when it all hit. Take a deep breath and SLOW DOWN. When we were in the hospital there was lots of time. Time went by slow, but it was so valuable. We got to play, hold you, sleep with you, cuddle, read to you, sing to you and so much more! So much time I was grateful for, even though I wish there was more.

As the event started and the kids were arriving I thought more about how trivial my list of things to do was and how your signs and this event was probably your way of saying slow down and enjoy your family because time goes by too fast and you just never know when your last time together will be.

It has been 1,916 days since I last held you. That’s 5 years, 2 months and 27 days since you were last in my arms. I promise you for your birthday that I will slow down, make memories, and enjoy life and our family. This will be my gift to you and to your brother and sister.

On your birthday we will be traveling. I will be patient, I will laugh, I will go with the flow. I will think of you and smile with every mile we travel, every laugh I hear, every ocean wave I see, every time the wind blows and every time I look into your brother and sister’s eyes. Gracie, your signs have been seen and heard. I love you. I miss you. I wish you the happiest 7th birthday ever. Happy Birthday, baby girl.

Love,
Mom

To all our supporters, Happy Easter! May you surround yourself with loved ones, make memories and remember to slow down. The page I was writing on in my journal had this quote and I thought it was perfect to share with you and to remember as we all feel the rush of life and sometimes forget what’s most important.
“Not that we deserve it, not that we can earn it, but that we know how precious and valuable a gift is. That’s what makes grace so amazing.”

The Little Pink Sweatshirt

Gracie. Five years without her. How is that possible?

January is a hard month full of flashbacks. It was 5 years ago that things got really bad. Gracie was very sick and as much as I hate to say it, it was getting scary and a lot for me to handle. I was the parent who pretended everything was ok, but inside I was falling apart. I knew what was coming and I didn’t want to admit it or face it. When Gracie was first diagnosed I spent every minute of the day and night with her. In the hospital, at home, clinic visits… you name it I was there. But her last few months were so scary that I was afraid to be alone with her at night for fear something would happen. So I did day duty and Geoff took night duty every night while I went to the RMH to sleep and be ready for what the next day would bring. I say I went to the RMH to sleep, but that’s not what would actually happen. Each night I would leave the hospital and head to the house and as soon as I would get to the house I would have a panic attack that I left and that something was going to go wrong. I would call Geoff and he would reassure me that everything was OK. I would then walk to the kitchen and try to eat something, but two bites in and that anxiety would hit again. I would head back to our bedroom at the house and call Geoff again. Once I knew everything was ok I’d watch some TV for a while, hoping to fall asleep, but every night my eyes would wander to the same place. The bed post on the corner of the bed. On that bed post hung Gracie’s little pink sweatshirt. She didn’t need it in the hospital and the room was so small we would keep it and lots of other belongings in our room at the RMH until she could leave the hospital. Every night I’d look at that little pink sweatshirt and tear up. What if she dies and there is no one to fill the little pink sweatshirt? What will I do if she’s not here to wear it? The amount of pain and tears looking at that sweatshirt and thinking about the future and her not being here to wear it was unbearable. I would finally calm myself down and convince myself that everything was going to be ok and to not think about it.

This is exactly what happens and what I have to tell myself every time I start thinking about Gracie’s death. Most of the time I force myself to think about the good times, the great memories and the fact that I was lucky enough to be Gracie’s mom and enjoy the little time I had with her. But there are times when her death and some of the hard, terrible memories of suffering and sadness arise. January 17th is one of those days. As much as I want to force myself to be happy and remember all the good times there has to be a time when I let myself think about what happened and be sad. I can’t hold that in forever. I am truly thankful for all the support and love that surrounded my family that day, but the fact that she died that day tends to overshadow that. To this day I am still in shock that my baby died. To this day I still think of that little pink sweatshirt hanging by it’s hood on the bedpost and all those scary thoughts and feelings I was having. I still ask why. I still cry. I still don’t understand how this could happen. I still think of Gracie every minute of every day. And I still have that little pink sweatshirt hanging up on our coat rack at home. Right now it is buried under all of our coats, but every spring when we slowly put our winter coats away it’s still there. I couldn’t bare to put that sweatshirt away in the past 5 years and to be honest it will probably be there for the next 5 years. As much pain looking at that little pink sweatshirt on the bed post at RMH brought me 5 years ago, it now brings me a sense of comfort. A sense that she is still here with us and that she may not be here to fill it with her little body, but it is instead a reminder of her love and spirit that fill us each day and remain in our home.

The saying “time heals all wounds” should never be associated with someone who has lost a child. It has been 5 years without Gracie in my world and there will never be a time that I am still not in disbelief about her death. Five years later and I go numb when I think about what happened. Sometimes it’s the only way I get through it. Five years later and there hasn’t been and will never be a day that I don’t yearn to hold my Gracie again.

Gracie. It’s January 17th again. The day you died. I miss you, I love you and I will always keep your little pink sweatshirt hanging in our home.