Stressed. Is anyone else feeling this way? My stress is different this year than in years past. I’m not too stressed about shopping and cooking and the hustle and bustle of Christmas. Instead my stress is due to fear. I know I may sound crazy but I’m scared. The recent acts of terrorism and violence leave me feeling worried and scared for my family, friends and for our world.

I was walking Luke to school the other day and had a complete panic attack as he walked through the school doors. I believe his school is very safe, but my mind still worries and is full of what ifs? The sad and crazy thing is this doesn’t just happen when I drop Luke off at school. I find myself feeling anxious and constantly on the lookout when I walk into a store, the bank, the shopping mall, work, the doctors office and even church. What I have realized lately is that it’s ok to have a watchful eye and to be safe, but I need to find a way to not let it consume my day, to not let it make me so stressed. That day I left Luke at school my fear set in and I thought to myself I can’t live like this. I can’t go on day to day worrying something is going to happen to Luke, my family, my friends. It would be extremely rare that something would happen, right? And then I think of Gracie. How many people lose their almost 2 year old child to cancer? It’s rare, but it happened to me. And I know that rare things can happen and that nobody is immune to them, whether it be cancer or a terrorist attack. Gracie’s cancer was kind of like a terrorist in her little body. It didn’t act fast. It was slow, painful, and brought worry and sadness to her and my family. But there were also times that this “terrorist” couldn’t bring my family down. We couldn’t live in fear and sadness all the time and it was the people around us and the love they gave our family and we gave each other that helped us overcome the “hostage-like” situation cancer put us in.

It was then on my walk home that I said to myself- What can make me feel not so scared and anxious and stressed? What makes me happy? I went through a list of things- shopping- no, lots of money- no, a new car- no, nothing “material” was going to help. And then it hit me! I am most happy when others around me are happy. There is nothing better than seeing or knowing you put a smile on the face of the person or people you are with. Talking to people, spending time with people and helping people are the most rewarding things you can do. The smiles and memories that are made when you surround yourself with people who make you smile and people who respect your differences and opinions is something that no terrorist in any form can take away from us.
This holiday season I hope to be able to put a smile on the faces of my family, friends and even strangers I meet. I believe that grace, kindness, and love can help so many overcome feelings of stress, fear and sadness that unspeakable events leave us feeling. One of my favorite Christmas songs is Let There Be Peace on Earth. I tear up every time I hear it because it seems so easy to live in Peace, but it is so hard for so many to do. So this year my Christmas wish is for Peace…..

Let there be Peace in the hearts of those who have lost a loved one in a terrorist attack.
Let there be Peace in the hearts of all people, regardless of race, religion, color, gender or nationality and hope that we can all get along and respect each other’s differences.
Let there be peace in the hearts of those who have lost a loved one.
Let there be Peace in the hearts of those who are battling cancer.
Let there be Peace in the hearts of those who are battling life threatening diseases.
Let there be Peace in the hearts of those who have lost a child.
And Please, Please, Please…
Let there be Peace on Earth.

This past September has been on my mind quite a bit lately. September is one of those months that does not bring back wonderful, happy memories of Gracie. September was the month we learned Gracie’s tumors grew back. In fact, we found out this news on the first day back to school. My poor work friends who received frantic texts and messages to pray for my daughter because something was wrong as they were welcoming their new students into their classroom that day. Four years later and it’s still tough remembering that day, but what happened last month for childhood cancer awareness kept me busy, thankful, and finally accepting the phrase “everything happens for a purpose”.

I can’t stop thinking about how all of you, our community, the country, the world has begun to take interest in childhood cancer awareness month and did something to raise awareness. This past September I finally felt like we and so many others who have been fighting for awareness and action were finally being recognized and more importantly influencing others to participate. I saw so many Facebook profiles lit up gold, action/super heroes were profile pictures in honor of childhood cancer, baseball stadiums around the country were going gold, players were raising money, sports teams were wearing gold, news programs were sharing stories and raising awareness, music and tv stars were also active in raising awareness… there was so much going on world wide. Locally, we were also staying busy and welcoming all the wonderful events so many of you were planning for our foundation. From dress down days to local sports teams wearing gold to paint parties to so many local businesses donating a portion of their profits for the month, and so much more- you all were busy!! And we can’t thank you enough!

While all this was going on, Geoff and I were asked by Gracie’s medical team to attend a memorial weekend at Double H Ranch in Lake Luzerne. They have invited us every year since Gracie died but because of our busy schedules we couldn’t go. Which I was kind of relieved about. It’s kind of stressful thinking about spending a weekend with a bunch of strangers who also lost a child. What would we talk about that wouldn’t make the whole weekend sad and depressing?

Well, this year the invite came again and Geoff said let’s go because our busy schedule was not so busy that weekend. Reluctantly, I said yes. If you know my husband Geoff, you know that he loves to talk and has no problem carrying on a conversation with anyone or anything! So I thought great- he can do all the talking and I can listen and leave if I have to. So we set out on a Friday night, the 3 of us on a trip I will never forget.
We arrived at Double H and was welcomed by our camp counselor and brought us to the dining room to eat. The camp counselor followed us and stayed with us the whole time. I kept wondering why she was staying with us, but I just went along with it. So there we are at dinner, me barely speaking because I kept wondering what this weekend was going to bring, Luke all excited and up and down to the all you can drink juice and milk machine and Geoff quiet for once because food was involved…and we all know how he loves his food! So, I sat awkwardly through dinner with the counselor and when we finished she brought us to our sleeping quarters in the Bobcat cabin. Luke fell in love with the place, Geoff and I felt like we were back in our college dorm room! Once we unpacked we headed to the bonfire, with our camp counselor in tow (at this point I thought, whatever!). We walked to a beautiful spacious area at the bottom of a ski slope (yes, this place has its own ski mountain with a chairlift!) and was greeted by more counselors at a smore’s table. Of course, Luke wanted smore’s and by then I had lost Geoff. He was already off in deep conversation with other parents, telling the stories of their deceased children. So there I was sitting on a blanket by myself, very uncomfortable and hoping no one would ask me my story. If they did I knew the flood gates were going to open and it was not going to be pretty. Luckily, one of Gracie’s nurses showed up at that point. Thank God Rebecca was there! I immediately started to feel at ease. While I was talking to Rebecca, Luke had started to wander off and wanted to check out this place. So as he starts exploring the camp counselor gets up and so do I to follow him. That’s when Rebecca informed me that the counselors are there for the kids and will stay with him when he wants to do stuff and we want to talk. Finally it made sense to me! That’s why she was following us around everywhere, she was there for Luke! Great, I finally figured that out, but in the meantime more families were arriving and I felt like the elephant in the room conversations were coming. Luke was gone so that meant more time to talk about my dead daughter…. I just didn’t want to. I was sad and mad and depressed that I was there and was a part of this group. No parent ever wants to be a part of this group.

A very nice family moved in closer to us as the night went on. Luke was still off with the counselor and this family had just started to make conversation with us. The casual conversation about everyday things all of a sudden turned into a conversation about their deceased son. They spoke about him with such love and comfort in their memories. I was starting to feel comfortable and loved listening to them talk about their son. He was 2 years old when he died from Leukemia 11 years ago. They have been to this camp every year since he passed and at that moment I could see how therapeutic and special this weekend at Double H is for those who have lost a child, a brother or a sister. These people talked about their child openly and often because it was ok, it was acceptable and we were all in the same boat. This was a weekend to remember Gracie, to talk about her and all the memories we had. I knew that I was going to be ok and that this wasn’t about or for me. This weekend was for my family and for Gracie. The family we met continued to talk about their son for a while and Geoff had starting telling them about Gracie. The whole family was listening and at one point in the conversation their 8 year old daughter turned to me and in the sweetest, most innocent voice asked me how old Gracie was when she died. She said it so innocently, but yet it sounded so weird to hear those words come from an 8 year olds mouth… I just wish no child would ever have to ask that question. I barely got out the words “almost 2” when the floodgates opened. I cried, but it was ok. I didn’t feel like the elephant in the room anymore and started feeling comfortable and aware of what this weekend was truly about.

From that point on the weekend was wonderful. Even though Gracie wasn’t there I felt like she was part of the memories we made as a family. The food was plentiful, delicious and never ending! The activities were unbelievable- archery, ropes course high in the tree tops, out door cooking, swimming, science experiments, amazing and not so ordinary crafts, connect 4 tournaments, and so much more! Double H really goes out of its way to make it a super fun place for kids and adults! There were so many smiles from all the siblings this weekend that I can’t even imagine what this place is like all summer long! Double H Ranch is occupied all summer long with kids who have life threatening illnesses. The motto at Double H is “magic happens here” and boy can I see that happening. The place is amazing and magical. Gracie would have gone there if she was still here and I bet she would have loved it.

On Saturday night there was a memorial service for all the kids who have passed away over the years. It was beautiful and the service touched so many hearts in the unique way they remember all our children that are gone too soon. There were lots and lots of tears at this service. Tears because I was missing Gracie and then tears because of all the kids I watched in this video that have passed away. I was so mad and sad as those pictures flashed and the names were read. I was mad and sad because it was too many. Too many young lives taken too early. When my tears finally stopped I reminded myself that this is why we have our foundation and that everything has a purpose. This is why so many of you went gold in September. This is why childhood cancer awareness month is so important. All of these faces gone too soon made me ready to continue our fight until a cure is found. September’s fundraising efforts and awareness was simply Amazing. But I’m asking all of you to please continue to raise awareness and take action in the fight against cancer because kids don’t get cancer just in the month of September. It happens everyday of every month. September may have passed, but the fight never ends.

If you’d like to learn more about Double H Ranch please visit www.doublehranch.org

Today is the last day of Childhood Cancer Awareness month! Meet our 5th AMAZING kid, Will! Will was diagnosed with cancer before Gracie was born. Our foundation was not created yet, so therefore we were not able to help them during Will’s fight, but the Schrader family was there to help us during Gracie’s battle with cancer and they continue to support our foundation. Even though our children’s fight with cancer was different, it is still the same on so many levels. We’ve experienced the ups and downs, the hospital stays, the grueling treatments, the unknown… and with that a bond is created. One that no parent wants to have, but one that is so supportive and needed when no one else knows or even wants to know what you’re talking about. I remember praying every night for Will and when reading what Jill wrote I cannot believe it’s been 4 years post transplant! My son played Lacrosse with Will this summer and as I sat on the sidelines watching I thanked God that Will was healthy, active and one heck of an athlete! Will~ you are AMAZING!

“Will somehow cut his finger – we dont know how and we don’t know why but it was a blessing in disguise.

The weekend of July 10th 2009 Will wasn’t feeling that great at all. He had gone to his 9 month check-up the previous Thursday and got his Hepatitis B shot. He was feverish on and off over the weekend. We thought it was a combination of teething and the shot. On Monday, his mannerisms got a bit weirder when everytime we picked him up he seemed like he tightened his body and held his legs up in the air. Maybe his ribs hurt, maybe his arms hurt, maybe the shot is still sore, I even started to think that maybe the shot had settled in his joints (is that even possible??). We called our pediatrician on Monday night after hours and he said to bring Will right in the next day. He said it just wasn’t normal. Andy took Will to the appointment and our pediatrician sent us to St. Lukes hospital in Utica to be admitted. Why?
Will had this cut on his finger and we didn’t know how he got it. We had noticed it the previous week and put neosporin on it, never really making a second thought. The finger had an infection that his body was trying to fight causing a lymph node to swell under his right armpit. Thats why Will was so uncomfortable when we were picking him up! His lymph node was extremely sore and by this time – swelled! We needed to go to the hospital to get antibiotics immediately, at least 48 hours of the antibiotics to help Will fight the infection.
We headed up to the hospital and got Will admitted. After an ultrasound and an x-ray of the lymph node we were headed back up to Wills room. Thats when things turned weird. The nurse was asked to watch our child and we were asked to follow the Dr. into a private room to talk. He kept saying he was sorry and that the white blood cell count was over 580,000. What? We didn’t understand? We were confused there were so many words and I’m sorry’s. We didn’t understand. Then we heard the word – Leukemia. Neither of us had any idea what we were in for.
We went straight in an ambulance to Upstate Medical Center, in Syracuse, NY.
Will was discharged in December of 2009 after 5 rounds of chemotherapy treatment, mostly inpatient stays with no more than 5 nights at hope throughout the months. After discharge we were getting regular checkups for the first 6 months, every month. For the next 6 months checkups were every other month. While there for what would have been his 1 yr of remission appt in December of 2010 Wills bloodwork showed that he had relapsed. He was immediately admitted. After two rounds of chemotherpy and an extensive search for a Bone Marrow Donor he was transferred to Boston Childrens Hospital for a Bone Marrow Transplant. We had no idea what we were in store for but we knew that the transplant was the only hope for a cancer free life.

It was all business from the start – 2 times daily radiations treatments, extensive chemo to kill all of his blood cells, then on the 10th day the bone marrow arrived and on February 26, 2011 Will recived his new life. His body fought hard to accept the new cells. After many transfusions, pokes, exams, medicines, his body started to recover….we were then transferred to the Ronald McDonald House in Boston and spend almost 2 weeks there with daily visits to the hospital. On April 12th 2011 Will was able to travel home from Boston with follow up for weekly visits.

Will is now currently 4 years post transplant remission. In February of 2016 he will be 5 years clear of the cancer. He will be 7 years old next month and he is a thriving 2nd grader that plays football, basketball, baseball and soccer!! We are so thankful!! One of my favorite charities to give to other than Gracies Foundation is the Make-A-Wish Foundation. Will was granted his “wish” of a hockey rink in his own back yard and to him that wish was one of the best things that could have ever happened!!”

Soon after Gracie passed away we received a call from our friends that their daughter had been diagnosed with ALL. Our hearts ached knowing what this family was going to go through for the next couple of years. We questioned how this could happen again to someone we know? But as we all know, cancer doesn’t discriminate, it doesn’t care who you are friends with, it doesn’t care if your family and friends have had enough heartache to last a lifetime. But we couldn’t dwell on that, instead it was time for Amazing Gracie’s Gift to help them. It was time to send prayers, love and hope to our friends and support them in any way we could through Gracie’s Foundation. Just last week Joelle and her father stopped by the house and Joelle looked amazing and so happy with that big, beautiful smile of hers! We’re so happy you are almost done with treatment – You are AMAZING, Joelle!

“Hello, my name is Dusty. I have a wonderful family that I love with all my heart and soul. My husband Bill and I have been married for 13 years. We have 3 beautiful daughters, Alexandria is 17 and the twins, Joelle & Jocelyn are 12. We are your everyday American family. We have 2 dogs, Luna & Charweewee. 2 cats, Raja & Lucky and 2 birds, Melody & Kupa. We go to work every day. Our kids go to school and are in and out of different sports and organizations. We love spending time with our families and going camping. See, normal. Well, there is this one thing…On September 30, 2013, our daughter Joelle was diagnosed with Acute Lymphoblastic Leukemia. Goodbye “Normal Life” and hello “Cancer Life”.

Joelle was 10 years old when she was diagnosed. She had just started 5th grade, her final year in elementary school and was looking forward to all the exciting things that came with being a “5th Grader”. Over the course of a week, Joelle became more and more pale. She had been complaining of a tummy ache and she was always tired. At first I though “ Oh great! School has just started and one of them is already getting sick!” I thought maybe she was coming down with the flu, but she wasnʼt throwing up and she wasnʼt running a fever. Then as she kept losing color I started to think maybe she was anemic. I called the doctor on Monday morning and they were so concerned with her symptoms that they told me to take her straight to the ER. Here I am thinking, “What? Are you kidding me? Sheʼs anemic, just send her for blood work! Great! Now Iʼm gonna have $100 ER bill.”

It was just a few hours later that the ER doctor ripped the floor right out from under my feet and told me that my baby had Leukemia and that she needed to be transported to Syracuse in an ambulance ASAP. I literally couldʼt breath. At one point I had sat down on the floor right there in the nurses station. The room was spinning and I just wanted to run and grab my baby and hold her. But I couldnʼt move. I couldnʼt breath. I couldʼt speak. And then it hit me like a slap to the face! She was the one who was sick! She was so very sick and I had to get up and get it together! I had to make phone calls, oh crap, my phone was almost dead. A very kind nurse heard me curse and brought me her charger. I got up, I called Bill, my dad & my mom. I cried as I told them the most horrific news I have ever had to give and what I needed from them. Alex & Jocelyn were home from school at this point and I couldnʼt get to them and I didnʼt know when I would be back home. Oh god, I was I going to tell them?! I stopped my thoughts there, I took a few deep breaths and I went back to my baby and I forced myself to smile and tell her everything was going to be alright but that we had to go to another hospital.

For those of you who donʼt know, Leukemia has the highest success rate in childrenʼs cancer. About 80% of children diagnosed with A.L.L. survive. Did you know that some say if your child is diagnosed with A.L.L. you are lucky? We heard it all! And though everyone was coming from a good place, there is no luck when it comes to your child being diagnosed with cancer! We watched our baby cry and beg us not to let them access her port or put her to sleep for countless spinals. We fought to get her to learn to swallow her pills every night and we still listen while we rub her back as she still gags every single time she takes them. We watched her wither down to 65 lbs till she looked like skin and bones. We cut and then shaved her hair because her hair falling out was too hard to witness. We have no carpets, or area rugs in our house because her sudden vomiting episodes ruined them. NO! There is no luck in having your child be diagnosed with Leukemia. Could it be worse? Yes! Her body could not have responded so well and the cancer could have and could still, come back. It is the reality of our lives, forever. We are just a little over a month away from Joelle hitting 2 years in remission! She is still going once a month for treatment at Golisano Childrenʼs Hospital in Syracuse and is scheduled to finish treatment in just 4 months, January of 2016! I thank God each and every day that Joelle has responded so well to her treatments!

Today Joelle starts 7th grade. She is a happy and for the most part a healthy 12 yr old girl. Last year she started “Give a gift from the heart” drive and hopes to do it again this year. She asked all her classmates and teachers to donate a new book for the book closet at Golisano and they collected and donated 380 books to the children who receive treatment at Golisano. She also hopes to help get her school to “Go Gold” in September and all donations will go to Alexʼs Lemonade Stand Foundation. She wants to help our cousin Sarah raise money to find a cure in memory of her son, Austin, who died from brain cancer at age 4.

There are so many organizations out there all fighting for the same thing. To raise awareness, to fund a cure and to help families build happy memories during this dark time in their lives. Amazing Gracieʼs Gift Foundation has done exactly that for our family. Theyʼve helped by giving us a monetary donation that allowed us to purchase pellets for our home in the winter time and travel expenses back and forth to Golisano. They gave us a Family Photo Shoot that brought some much needed light into our lives. I will forever have the memories of that day hanging on my wall. They have countless fundraisers and work tirelessly to give to others during the hardest days of their lives. My family and I will forever be grateful for what they have done for us and for others. My husband is in the process of trying to get the company he works for, Con-way Freight, to GO GOLD and all the proceeds with go directly to Amazing Gracieʼs Gift Foundation. We truly hope to hep keep this foundation up and running and supporting families for years to come!”

Please click below to see another beautiful pic of Joelle!

AGGBio

This little boy and his family came into the Ronald McDonald House in Albany during the last few months we were there with Gracie. We met Chase when he was 2 months old. He has a special place in our heart as he and Gracie actually met and fought their battle with cancer together. His family has always stayed in contact with us and continue to give us updates and support whenever we ask. Meet this little AMAZING miracle baby, Chase!

“This is Chase Foley…my hero. Chase Roger Foley was diagnosed at just 1 MONTH OLD with ALL (Acute Lymphoblastic Leukemia). I remember it like it was yesterday: “Mrs. Foley, your son will not make it through the night. His WBC is 1.8 million (which the hospital had never seen even in adults) and he is 98% cancer filled. You need to prepare yourself for the next few hours.” We were devastated, but never gave up. We didn’t allow ourselves to plan anything but our life with our hero! Hours turned into days which turned into weeks. The doctors were very amazed at how Chase took to treatment and did not stop fighting hard for his life.

Everything was going great. No major setbacks and treatment was ending! Can you believe it? For a baby that was told wouldn’t make it through the night, Chase was finally 2 years old and we were doing his exit interview after treatment. This was both scary, and exciting at the time.

Unfortunately, on April 4, 2014, we were slapped in the face (for lack of better terms) again. Out of the blue, Chase had relapsed. What was a routine Bone Marrow test to see if he was Anemic, turned out to be a relapse. At this point, Chase needed a Bone Marrow Transplant, with Radiation.

On August 4, 2014, Chase was given a second chance at life. He did remarkably well with transplant, and continues to prove the doctors that first night wrong. Many people say that we are strong. They ask how did I survive these last almost 4 years. It’s because of people that held us up when we were falling. I knew the Lawton’s before they were “Amazing Gracie’s Foundation.” I had the pleasure of meeting Gracie and watch her and Chase playing at the Ronald McDonald House together. We have laughed together and cried together. This is how I get through it. We are not alone.

Even after the Lawtons experienced their loss, something that NO PARENT should have to go through, they rallied together in the name of their angel and decided to give back to families facing the same battles. Amazing Grace Gift foundation has been there for my family. Because of their generosity, my family was able to take a trip to the lake back home. Some of our greatest memories together are from 2 years ago on that lake. And now, Amazing Gracie’s Gift Foundation is there to help my family! From donating backpacks and supplies to the children at the Ronald McDonald House to offering to help us when needed, the Foundation steps up to help. I am forever grateful that I have had the support emotionally from the Lawtons and their Amazing Gracie’s Gift Foundation.”

Meet another AMAZING kid, Cooper!! Last year we were able to meet Cooper and his family as they helped us with our Night of Grace video. Let me tell you, this little boy is one handsome, cool dude! And his family is just as beautiful and cool as he is!

♥ Cooper, we are so happy to see you starting pre-k as a happy healthy 4 year old boy! You are AMAZING!

“Cooper was diagnosed with a rare form of cancer called rhabdomyosarcoma when he was just 17 months old. Leading up to his diagnosis, he was constantly getting fevers (weekly) and his stomach was very hard. The doctors just kept saying that he was teething. My instinct told me something more was wrong so we headed for the hospital where an ultrasound was done and they discovered he had a five pound mass in his belly. They did surgery to remove the mass but as they were removing it the mass ruptured sending Cooper to a year of chemotherapy and 25 consecutive days of radiation. Cooper is now 4 and starting PreK in September and has been NED for almost two years. He loves playing outside with his sister Addison. He also likes playing Paw Patrol. Gracie’s gift is an amazing organization that helped us take Cooper to see Mickey Mouse in Disney. Another great organization is Peaches Neet Feet. They hand paint sneakers for sick children and Cooper has a pair that will forever be cherished.”

Meet our Amazing kid, Sophia! Her family is amazing and so full of support, dedication and understanding of the importance of making memories and awareness of childhood cancer. Read what Sophia’s mother, Julie has to say:

“Sophia is our beautiful 13 year old daughter who was diagnosed with medulloblastoma (a brain tumor) in December of 2012. She was just 5 when diagnosed , she underwent surgery to remove the tumor, 28 days of full brain and spine radiation, and 9 rounds of chemo that took a little over a year to complete. After 6 years of being in remission, and preserving to gain back her strength, Sophia’s cancer came back in August 2013. Currently, she receives chemotherapy 6 days out of the month that requires at least two round trips out of state.

Almost anyone who knows Sophia says “her smile is contagious”. Although there have been many things she can’t do… Sophia focuses on what she can and complains very little. Sophia’s favorite color has always been yellow… bright and cheery, a very good description of who she is. One of her favorite activities is baking… she loves to be in the kitchen and has a dream to open a bakery one day.
As her parents, we would do anything to take this all away, but we cant. We work hard to find the best care for her, and provide it… no matter the cost. For kids like Sophia, there are no more protocols to follow… there are just clinical trials to keep the cancer away and hope for another remission.

As one can only imagine this takes a lot of effort in every way imaginable. If it weren’t for the genorosity of the Amazing Gracie Foundation that much needed break from all these treatments and the ability to make some awesome family memories may have not been possible. Our families Montra has been “begin with the end in mind” but after Sophia’s 3rd recurrence.. we just began. With the help of the foundation we were able to take two small getaways, and a trip to Disney. Not to mention an awesome photos shoot and a pampering day with her friends. Seeing Sophia smile and thoroughly enjoy herself with her sister was amazing. My husband and I wanted to “freeze” time. If we can’t get a cure… we’ve at least had dream. A dream to see Sophia as a princess, a dream to see she and her sister laugh over the little things, dream dinners with characters, swimming, sliding, indoor waterpark, and just being “a normal” family while enduring a storm. Priceless!

If you want to make a difference in a family whose child has been diagnosed with cancer… give to this foundation. They are a group of people who really cares and understands the difficulties of this journey. If you don’t feel compelled to give here, then to research to find a cure for kids like Sophia and soooo many others. Research like Connecticut Brain Tumor Alliance, or St. Baldricks , or Whole in the Wall Gang. If everyone gave a little it could make a huge difference.
Sincerely and with gratitude,
The Johnson’s”

As part of Childhood Cancer Awareness Month we’d like to share with you the brave children who are fighting or who have fought childhood cancer. Today’s AMAZING kid is Kennedy!

Kennedy was diagnosed at 16 months old with stage 4 hepatoblastoma, a type of liver cancer that had metastasized to the outside of her liver, her gallbladder, and her lungs. She received 4 cycles of high dose chemo, 2 extensive surgeries to remove the tumor and fix a bile duct leak from her first surgery, then 2 more cycles of cleanup chemo which included an additional chemotherapy to the three she had in the first 4 cycles.

On August 28, 2013 she received her last chemo treatment and was considered NED (no evidence of disease).

Kennedy is now a very active 3.5 year old who is entering pre-k. She loves books, animals, dancing, swimming, the outdoors, and playing with her friends and family. She remains in remission and is monitored regularly with blood work at Albany Med. She just recently celebrated being in remission for 2 years which was a very exciting time for her and her friends and family.

Kennedy enjoys donating to many cancer related charities but her favorites are Amazing Gracie’s Gift Foundation and St Baldrick’s!

Imagine

Imagine your child has been diagnosed with cancer. It’s something nobody wants to even think about, but just for a minute in the month of September (Childhood Cancer Awareness month) imagine being the parent of a child with cancer. I’m going to quickly take you through a minute of what it could be like if your child does…

Imagine your child is sick. Her belly has a hard mass, she’s lethargic and something is not right. You take her to the ER. The ER sends you to Albany Med at 1:00 in the morning. The next day the doctor comes in and tells you something you never EVER want to hear – your child has cancer. A very bad cancer that has no cure. But were going to try and beat this by injecting poison and hard metals into a permanent hole (port) we put in your child’s body. You will be in and out of the hospital and your child will be very sick. You need to stop working to be with your child. Your child is puking for days after each treatment. Your child is losing weight and hair and is becoming very pale and fragile. The treatments are killing your child… But so is the cancer. You choose to stop the treatment that is painfully killing your child and is not working and instead choose to battle the pain of the cancer itself with drugs. Drugs that take away the pain, but also leave your child in a tired state. Your child starts puking up blood. The pain is very visible when she looks at you. Their breathing gets heavier. You take an emergency trip to the hospital in which the doctor tells you to keep driving even if she dies in your arms on the way. She doesn’t die, but is placed more heavily on drugs and is sent home on Hospice. You hold her as much as possible and listen to the heavy, short, raspy breathes every second. Your child opens her eyes for the last time and takes her last breath as she coughs up more blood. Everyone is screaming and crying and wishing for her breathing to start again. Your child died from cancer. The tumor grew into a major blood vessel and she hemorrhaged. Imagine…

I don’t have to imagine this, I lived it. And what makes me mad and sad is that I am not the only one that has or is living this nightmare. Years ago a child I knew was diagnosed with cancer and I remember thinking this will never happen to my family because childhood cancer doesn’t happen that often. I thought if you knew one person in your lifetime with cancer that would be it. I am so ashamed I thought this way. If only I did my research, was more aware and took action maybe we could’ve been ahead in the fight against cancer. Of course I could not do this on my own, but I wonder how many other people out there think the way I once thought. That’s why I am writing this. That’s why I want you to imagine your child has cancer. It can happen to anyone and the prevalence of cancer in children is higher than it has ever been. Maybe, just maybe if more people are aware we can find more humane treatments and cures for these children, along with more ways to help their families. I had no idea the grim reality of the lack and inequality of funding for childhood cancer until there was nothing to help my child and I did my research.

Take a look at these facts:

• Each school day, 46 children are diagnosed with cancer.
• One in 330 children will develop cancer by age 20.
• Each year in the U.S. over 12,600 children are diagnosed with cancer.
• Although the 5-year survival rate is steadily increasing, one quarter of children diagnosed with cancer will die 5 years from the time of diagnosis.
• Cancer remains the number one disease killer of America’s children – more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.
• 80% of children have metastatic disease at time of diagnosis as compared to only 20% of adults.
• There are currently more than 270,000 childhood cancer survivors in the U.S.
• Late effects of childhood cancer treatment are common in survivors, and approximately one-third are moderate to severe.
• Worldwide, 160,000 kids are diagnosed with cancer each year.

Now, I want you to one last time Imagine… Imagine a world without the heartache and pain that childhood cancer causes for any family or child. I try to imagine this everyday and hope and pray this will come true. I do believe it will come true if we raise awareness and take action. I don’t want anyone to ever feel the pain of losing a child. It leaves you damaged forever. You can move on to a certain degree, but you are never, ever the same. So I urge you to take action before it happens to you or to someone in your family. Please help me -Support Childhood cancer. Become Aware. Take Action.

Here’s how you can take action:

• Make a donation to amazinggraciesgift.org – we have lots of events and fundraisers you can participate in like Night of Grace, 50 States of Grace, Dress Down Days, Golf Tournament and more!
• Make a donation to any research foundation for childhood cancer- The Ronan Thompson Foundation, Alex’s Lemonade Stand or St. Baldricks’s are great organizations whose funds goes towards research.
• Cook a meal or donate supplies to The Ronald McDonald House
• Run a race
• Have a lemonade stand
• Host a dress down day at work
• Host a neighborhood movie night
• Host a Zumbathon
• Write your congressman
• Help a family who has a child with cancer.

Can’t think of anything to do? We’ve created a list of ways you can help us help others. Check out our website under “50 States of Grace” or email me and I can give you ideas.

So many of you continue to show your support to my family and Amazing Gracie’s Gift Foundation. Amazing Gracie’s Gift Foundation is helping many families in their fight against childhood cancer. With your help we have helped over 100 families since our existence! We thank you for taking action. Those who are taking action spread the word and encourage others to be aware and take action too.

Summer – A time to create and make memories. This is what our foundation is about, except we get to do that all year for the families our foundation helps! I really haven’t had time to write a blog because we’ve been doing these exact things. Geoff, Luke and I have been spending lots of time camping with family and friends. Each of these trips are wonderful and memorable, but still leave a feeling of emptiness knowing Gracie is not here to share them with us. The saying of “you don’t know what you’ve got until it’s gone” is so very true. We only wish we could have our whole family together to enjoy the summer.

Recently, we took our annual trip to Old Forge to stay at the camp that was Gracie’s last vacation spot before her tumors started growing back and she became very sick. It’s a beautiful place with memories of our Gracie everywhere we look. Of course it brings tears, but it also brings back a feeling of happiness knowing she was so happy, energetic and was able to be a normal almost 2 year old at that point. A few weeks later that all changed for us again, but that moment and that time we will hold close to our hearts. While we were there we took a boat trip into Inlet and let the kids play at the beach and do a little shopping. On our way out I saw this quote in the above picture on one of the buildings and I thought it was perfect, so with August upon us and summer half over we wanted to wish all of our supporters a happy, safe and fun summer And remember to take nothing but Memories, kill nothing but time and leave nothing but footprints.

Stay tuned for some upcoming events for Amazing Gracie’s Gift Foundation! Night of Grace will have an early bird sale in the month of August and September is Childhood Cancer Awareness month- Please think about hosting an event or a dress down at your place of work to support Amazing Gracie’s Gift Foundation.