Smashing Cancer!

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Regan and Abby

On Sunday, March 19, Nick’s Round Table’s fundraising chair, Sarah Collins, organized a fundraiser at Smashburgers in Clifton Park. She and other members worked hard to spread the word. Regan, who is currently battling cancer and Abby, who is done with her treatment joined Nick’s Fight to be Healed Foundation for their first fundraiser at Smashburger’s in Clifton Park. This was the first time Abby ever had a burger, and it would appear that the Smashburger Kids’ meal was a success!

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My husband, Luke, and his U12 Clifton Park A-team had just played a soccer game and came in all hungry and ready to chow down for a great cause!

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Siblings were happy to join in!

 

 

167 people joined us during this fundraiser. Smashburger donated $2 for every person who ordered an entree or kids’ meal. As a benefit they had a 1/2 off milkshake special and 71 people took advantage of it! I heard they are the best in the area!

Thank you to Leo and Sue Butera for your support and donating $334 to Nick’s Round Table that will be used to support local children battling cancer! Thanks to everyone who came out to eat!

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Karen Patchell, didn’t have Chloe with her, but rather good friends, Kathy and Craig!

Expanding your Heart

This past weekend was the 4th annual Purple Tie Affair benefiting Nick’s Fight to be Healed Foundation and The Leukemia & Lymphoma Society through Team in Training program. It’s always a night of celebration, good food, and dancing, but at this event many hearts were bursting.

In the beginning of the evening, we held a special cocktail hour that gave those affected by cancer a chance to share their story. I spoke about our foundation and welcomed everyone to enjoyed themselves, but asked that tomorrow everyone think about what they could do to help a child beat cancer. We all have a special light or passion within ourselves that we can use to make the world a better place and to make a difference for someone battling cancer.

Purple Tie committee and Anthony Yevoli LLS Boy of the Year making a fantastic speech.

Nick had a huge heart. He was such a love bug, compassionate, and enthusiastic. He had a zest for life that was infectious. When I lost Nick instead of sealing off my heart to life, I opened it and reached out to help others with the assistance of my friends and family. I can’t change what happened to my son and losing him will always leave a gap in my life. But by opening my heart and taking on this mission to help children with cancer, Nick has brought more love into my life. He has guided me to children and young adults to make my heart soar with their bravery, determination and simple love of life.

Some of the amazing volunteers and board members of Nick’s Fight!

Today I went to visit my friend, Justin, who has been in the hospital for a bit of time with complications from his treatments. Justin is the ultimate warrior. He has had a rough road, but he remains brave and true to his desire to be healed. Justin was a bit low when I arrived. He looked tired and was curled up in his bed.

I sat and we began to talk about all the fantabulous Marvel comic movies that have been made throughout the years and how they all thread together. Justin knew the characters, the connections, and what movies were being made and were coming out this year. As he spoke, his eyes lit with enthusiasm and true interest. Then our conversation continued onto Greek, Roman, Norse, Egyptian, and Irish mythology. Justin is a powerhouse of knowledge and as anyone knows I love Marvel comics and mythology. When we talked about the Renaissance, I knew we shared something special. By the time I had to leave, Justin was sitting up in bed drinking a coffee coolatta!

I wish that Justin had never gotten cancer. The same way I feel about Nick and every child who has been diagnosed. But if I would have sealed myself off from this world, never to be around children and young adults who are battling, I would have never met Justin. So much of what Justin loves is what Nick loved, and he made me so happy to sit there and talk about what we are both passionate about. Spending time with Justin today made my heart explode with joy!

I hope our visit helped him too. It’s hard being in the hospital every single day when you only want to be at home and with your friends. Justin is a true knight that King Arthur would surely have had at his round table, and when he is better, I hope that he will join Nick’s Round Table.

Thank you, Justin for chilling with me today! Feel better!

Kharismatic Kendra

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Kendra jumped into fighting for her health just like everything else she does–full force. I remember meeting the entire Sisco family at Mocha Lisa’s when they contacted me about Kendra having her 16th birthday party and wanting to make it into a fundraiser for the foundation and The Melodies Center. Her parents, George and Sue, and her big sister, Kailyn, all were there. I could tell immediately that they had a strong family unit.

Kendra had a huge bash and it was the beginning of her philanthropic lifestyle. I believe she has learned it from her parents as they are both very giving and have that ‘get it done’ attitude. Kendra then became part of Nick’s Round Table, which had a huge part in helping her connect and educate students at Shenendehowa High School about teens with cancer. Our perceptions of what kids with cancer should look or act like is very varied. Kendra showed that bald or hurting, she could still be involved, even after missing so much school.

Kendra was co-vice-president of the round table and was Leukemia & Lymphoma’s Girl of the Year in addition to other events she was involved in. Everyone deals with their cancer diagnosis however they see fit and what feels right for them. Even now that Kendra is locally attending college, she recently came to Nick’s Run to be Healed with her family in full force and a powerful team of supporters for Kendra’s Kure. Her cancer journey has led her on a gratifying path.

Kendra’s parents have shown how important it is to make sure your child knows that they are not alone. There are many loving and caring people willing to help, share and advise.

George and Sue express that, “Knowing that there are cures for many of the illnesses and that there are still good people in the world get us through. The people we have met including nurses and specialists will be friends forever. Also giving back to others and seeing it make a difference is empowering.”

We are thankful for Kendra’s health and to have her family’s support!

 

Energetic Amelia

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I first met Amelia at the 2015 Abby and Matt’s First Dance Celebration. She and her parents sat with me at our table. Amelia was a bundle of energy and to be honest, I didn’t even know that she was a cancer patient. She danced and hugged the other kids and had a fabulous time.

Her mom wants everyone to know that cancer is not contagious. Educate your children so when they see someone in school who is bald or sick, they don’t point and whisper. They are going through enough. Let them be children. Don’t put them in a bubble as much as you want to, for someday they will be healed and back into the world. Keep day to day as normal as possible. This is their life, their memories don’t make them all sad about sickness!

As parents we need to protect our children and watch what other people say in front of them so they aren’t scared. They listen and they watch how you react. There is a time to cry from the stress and your own fear, just not in front of your child who is trying so hard to be brave.

Jessica, Amelia’s mom wrote:

“Amelia gives me my strength and hope every day. People keep saying to me ‘you’re a strong woman, Jessica, Amelia gets her strength from you.’ But they are wrong; I get my strength from her. She is always smiling. My boys and Amelia dad, and my parents give me strength. They are my rocks. Each and every one of them help me in one way or the other. Your immediate family is the most important during this time. You will lose some friends, but you will make lifetime ones.”

“Then of course last but not far from least Albany Med Melodies Center team of doctor and nurses, Courtney and Angie and D7 floor from the nurses, PA’s, front desk people, cleaning ladies, everybody and anybody that has worked in some way on D7. All of them are always there for us and give all of us support and hope. They become your family. They will always be in my heart and a part of my life.”

Adriana Smiling Through

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Adriana was in the middle of her senior year at Colonie Central High School when she was diagnosed with Acute Myeloid leukemia on February 5, 2016. She needed a bone marrow transplant, but her immediate family was not a match. She ended up with a 9/10 match from Germany. Adriana had to endure three rounds of chemotherapy. The first one was very hard on her and she had many setbacks, but she endured.

On June 12, one week prior to making the trip for her transplant, Adriana graduated from high school with her whole family watching. On June 22, she was admitted into Strong Memorial Hospital where she would endure what doctors warned would be the most aggressive chemotherapy that would knock her on her butt. Her strength and positive personality helped her through this round.

June 28 was transplant day. Adriana knew she would be all right as it was also her grandmother’s birthday. Her grandmother is a breast cancer survivor, so there are some strong women in this family. Adriana did so well, she was released a week earlier than most patients. Today Adriana is healthy and not having any issues.

Adriana’s mom believes that her strength and determination helped her through. She never showed a moment of sadness. In addition, her sense of humor not only helped Adriana deal with her illness, but it helped everyone else.

This quote from Adriana during her transplant shows her positive attitude:

“So I think it’s finally time to post this and yes with a filter, but I’m still bald and I’m proud. Leukemia is really no joke, yeah at times it’s scary, but I deal with that through humor and who I am as a person. I may say it hasn’t hit me that I have cancer yet, but secretly it has. You don’t know what’s gunna happen, sometimes it’s tough with all these little and even bigger problems but sometimes it does get easy…Now sitting here in Rochester anticipating this bone marrow that will be placed in me on the 28th is kind of nerve racking, because I just want it done and over with. With that also comes it’s own problems, but I’m now strong enough to face them and I’m not a bit scared.

Adriana uses humor and expression to help her deal with her diagnosis. She said that she is strong enough to get through this. Digging deep and knowing what coping mechanisms work for her is important. She knows that by getting through the toughest chemo, she can get through anything. It changes you inside and out.

I’m impressed and inspired by her frankness and her strength. And with that beautiful smile, you know she laughs a lot, which is the best healer!

 

Together with Teagan

teaganfinalI first met Teagan and her family when I ran in her family’s fundraiser, which was a run up in Saratoga. It started a relationship that has lasted numerous years. When her parents, Juergen and Holly, decided not to do the run anymore, they jumped on board with Nick’s Fight to be Healed Foundation to help organize Nick’s Run to be Healed. Juergen’s company, Hound Dog Graphics, has been a continued sponsor. After the 7th year of Nick’s Run that was on September 25, 2016, they have become an integral part of this event.

What I love the most about families with cancer and especially families who create fundraisers or foundations is that ego doesn’t exist. Yes, we want our child’s name to be included in a name of the event or the foundation, or noted in the room we raised money to build, but that is so our child’s name is kept in the forefront. It keeps their spirit strong in our mind and close to our hearts.

But when it comes to helping a child in need or supporting another fundraiser or foundation, we come together as a single unit and do what needs to be done. It gives me hope that different people from any walk of life can still come together for a common cause for the good of all.

Teagan has not only had to deal with cancer, but also with developmental and medical concerns. Yet she is like any other 11 year old. She wants to enjoy everything she can and be with her family. She has had so many obstacles, but she doesn’t complain. She accepts who she is, what she has to deal with, and she lives her life from that point, from what is. How freeing is that? She doesn’t have to waste energy on what she wants to be. We can learn so much from our kids and connect with our own inner child if we would just listen to them!

Teagan is her family’s hero. I know she inspires her brothers, as I see how wonderful they are to her. Together with Teagan, her family has been through so much. For 9 years, Teagan has been cancer free. It hasn’t been an easy road, but her family has been right there beside her.

Go Get ‘Em, Rachael!

 

Rachael is a powerhouse of energy and one of the biggest supporters of her young adult cancer community. From the start of her diagnosis, even before Dr. Kanwar explained anything to her parents, Rachael wanted to be included. She needed to know everything about her disease, and she didn’t want it sugar coated. She was 16 years old and was ready to fight. Rachael was more concerned with comforting her parents and insisted on being the one to tell her little brother and all her friends. She took on that responsibility and always thinks of others before herself.

This take charge attitude has served Rachael very well. In addition to it helping her heal and be three years in remission, Rachael took on the responsibility of raising money and awareness for children and young adults battling cancer. Since Rachael was diagnosed, she has started a fundraiser called Trending 4 Fashion. Not only does this event currently raise money for The Melodies Center, but it also gives children an opportunity to dress up and walk the runway. They are often paired with the staff at the clinic, which builds and even deeper connection and allows everyone to let loose a bit.

Rachael knows what she wants in life, she knows that cancer has changed her path in life. Here are her words:

Most importantly, I want people to know that everyone’s fight is different. Even though two people may be diagnosed with the exact same diagnosis does not mean that those two people will handle it the same way.

Personally for me, I never wanted to be looked at like a victim. I never wanted people to feel bad for me and feel bad for what I was going through. Obviously being diagnosed with cancer was one of the hardest things I’ve ever been through, but what I continuously told myself was “it is what it is.” I found that there was no point in harping on the fact that it happened, because at the end of the day it did, and the only other thing left to do was fight. I tried to focus all of my energy and thoughts on that fight by taking one step at a time, getting through those eight hours of chemo and not thinking about the next day until it came.

And while I say all of this and truly mean it, that does not mean that I never had “bad days.” I’m still human, and I was still dealing with something that literally changed my life forever. But with that being said I would never take back what happened to me. Being diagnosed helped me learn who I truly am and who I want to be. It taught me lessons at such a young age of what is truly important in life. It brought me to Ithaca College where I’ve made the best of friends, it’s brought me many opportunities that I am forever thankful for and has brought me to meet and get to know so many other survivors that are truly inspiring.

 

While I have now been cancer free for almost four years, the support from my friends, family and community both while I was in treatment and even now, four years later, is truly what has given me strength and hope. I would not have been able to make it through without those people who never let me down and never let me forget to fight.

Thank you, Rachael, for taking a devastating diagnosis and paying it forward to those that helped you. Not only do you help the clinic, but you empower others going through this battle to never give up. You are truly a role model and an inspiration to so many.

 

 

Amazing Abby

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Abby is amazing in many ways. She is full of vitality, spunk, sass, and love. I had met Abby after she “married” nurse Matt and the wedding video went viral. Her mom, Renee, wanted to have a wedding/dance reception so Abby and Matt could have their “first dance.” The idea spread into a celebration of all our children who are battling and their families.

I have to say that Abby & Matt’s First Dance Celebration is one of my favorite events. I think because that is what it was–an event. We didn’t worry about raising money, we created a safe and festive space for our children to have fun and express their joy of life. It was so successful that it will happen again this year! Mark your calendar for November 5 for “Dance to be Healed!”

This is what Abby does every day. She has so much energy! Every time I see her either at her Lemonade Stand to raise money for childhood cancer research, or at the very successful carnival, or our pig roast, she immediately tags me, says, “You’re it,” and runs! Of course I have to chase her! Abby exudes a warmth and energy that draws people to her, as she freely gives her love.

Abby’s friend, Regan, who was featured this month, was diagnosed with the same exact type of cancer as Abby. It’s disturbing. But Abby takes her supporting role very seriously and looks after Regan. At our summer pig roast, Abby twirled Chase around in a circle, and they laughed uproariously. Abby radiates joy, and I love to be around her.

Living Life Large. That is what our kids with cancer do when they can, because they know first hand that they can be trapped in a bed or the hospital at any time. So they live their life in the present. So much we can learn from our cancer kids. Live life now. Here. Take in the moment wherever you are reading this and absorb the message.

I agree with Abby’s mom, Renee, when she says that, “Watching a child battle cancer is an inspiring and difficult thing. They will encourage you to want to change the world, starting with better treatment and more research.” Abby and all the other children battling encourage us to make a difference and be better people for them.

Abby’s family takes her treatment day by day and are so excited that she will be done this October! They appreciate all the support they have received and give back by being involved in so many fundraising events.

Keep Sparkling, Abby!

 

Emily Always Sees the Upside of Life

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How can a child remain so positive when they are going through a cancer treatment? That was one of the things that amazed me about my son, Nick, when he was so ill. Even when he was so fatigued and couldn’t do anything, he still had a smile on his face. It seemed very important to him that everyone else was comfortable and doing all right.

Emily looks at life with optimism and sees goodness, instead of what may hurt. Knowing that the treatments will make them better can change a bad experience into a good one, but it’s still painful. Our children still cry, and they need to know that it’s all right to show pain, anger, frustration, and confusion. These emotions only cause more disease if they are bottled up.

But when your child smiles at you while in clinic, you can’t help but smile and be amazed at how strong and brave they are.

Emily’s family knows that cancer can take a lot out of a child, it can change their demeanor, and kids need extra amounts of love and understanding when this happens. Being showered with love in these tough times helps immensely. In addition, the generosity of people and groups help the patient and the whole family.

Parents follow their sick child’s lead. Right now Emily is in her maintenance phase. She is still getting medication, but she is on the road to being healed. That is a reason in itself for her to be positive, and when her family sees her smile, I’m sure they smile right back at her and feel blessed.

Gotta Have Faith

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Her parents must have known that their daughter would need a strong faith and belief in herself in order to battle cancer twice and thus named her appropriately. In November 2012, Faith was diagnosed and treated for Wilm’s Tumor. On June 15, 2015, Faith was diagnosed with T-Cell Acute Lymphoblastic Leukemia, which is said to not be related to her tumor.

This is an interesting thought, and I include this because her mom wrote that to me when she was describing Faith. As parents we often wonder how our child got cancer. We did everything right, fed them good food, took them to the doctor, made sure they exercised and rested. How could this happen? When a child is diagnosed with another form of cancer, we can only wonder if the treatments that are meant to save her, may have caused another cancer. It’s a double-edged sword. You have to destroy good cells to get to the bad ones. It’s a chance we take to save our child’s life, and I don’t know a parent who wouldn’t take that chance.

Faith has been tested. She was hospitalized one month after her second diagnosis for pancreatitis. She had to have surgery and was then in the hospital for 10 days with a c-diff infection. During this time, she lost the ability to walk independently and went home with a wheelchair and walker. It took months of physical therapy and sheer will power for her to walk again.

I was very happy to see Faith’s photo in front of her school this year. She wasn’t able to attend last year , so was very excited to be able to go. That connection to school and friends is priceless.

Faith’s mom believes that each and every one of our children fighting cancer is a true warrior. They have to undergo so many treatments and procedures. Their bodies are in warfare. Her mother worries about the side effects, which she has had to directly deal with. Some may be neurological delays, liver and heart disease, and secondary cancers. Yet our kids greet each day looking for new possibilities and adventures. They have to! Children need something to look forward to instead of going to the hospital every day.

Faith and her sister, Noelle, give their family hope. Despite her world being turned upside down and being scared, confused, and sometimes ignored, Noelle is Faith’s biggest, loudest, and most helpful ally. Family and friends, church and school members make such a big difference. We really have quite an amazing community.

Faith’s mom wants to thank everyone who has helped–friends and family, organizations like Nick’s Fight to be Healed, LukeStrong (Faith doesn’t leave the house without her down pillow), Maddie’s Mark, Make-a-Wish, The Bus Stop program, Encourage Kids, and Double H Ranch, as well as the oncologists, nurses and staff at The Melodies Center.

It takes a village, a whole community to heal our children, along with a beautiful Faith.

Never Giving Up Who She Is –Kacey

kaceyfinalI met Kacey when she was in rehab in Albany Medical Center. She had been in the hospital for months, and because of the intense chemotherapy she needed to be healed, she lost the use of her legs.

I did mention that Kacey is a dancer, right? Cancer never lets an opportunity go by to steal away a person’s identity. It has a tendency to take away what that person loves the most. It strips you down to your bare soul, and hopes that you never get back up. If cancer was a criminal, it would be serving endless life sentences for what it has done to our children.

Identity.

Kacey’s idea of who she was, what she wanted to be, how she would play out her senior year was all changed when she was diagnosed with cancer. Suddenly this wonderful, young woman had to not only learn to walk again, but before she could do that, she had to be able to sit up and stand. It took months and months of hard work and determination. Being a dancer, Kacey is used to hard work and grueling hours, but this type of training tested every belief and bit of confidence she had in herself.

The hardest part about her journey was that she wasn’t home. When Nick’s Fight found out that Kacey couldn’t go home until she had a wheelchair ramp, we went into motion. We rented one with the support of The Catie Hoch Foundation and Maddie’s Mark Foundation. The ramp was ready, but Kacey still wasn’t healthy enough, but she kept working on being able to stand.

When we realized that she would need the ramp for a longer period of time, we purchased the material and her family and friends built the ramp. Finally Kacey was home. What a beautiful sight!

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Kacey sets her sights on goals, and she doesn’t let anything get in her way. I have learned that this is who she is. She wanted to walk across the stage at her graduation. Guess what, she did.

She didn’t have to redefine who she was. Kacey already knows that she is a determined, hard-working, and generous person. Kacey just found other ways to express who she is. Now Kacey is driving, walking, and volunteers for Nick’s Round Table. She has shown us that giving up just isn’t an option. If you want something bad enough, have a great support system, and stay positive, you can do anything.

Caring for Kathryn

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Kathryn’s adorable face and cheeks just make you want to squeeze them! Her eyes hold a vitality and joy that we always want to see in our kids’ faces. At 2 years old she is battling cancer, has had a bone marrow transplant, and will need another.

Her parents main concern is understanding her pain and being able to address it. Babies and toddlers can’t describe what they are feeling, and it’s imperative to stay ahead of their pain and issues, both physical and emotional. Having a child with cancer also makes it difficult to parent them. It’s hard to know if a child is being a picky eater, acting out, or in so much pain that is the only way they can act. Do we discipline our children the same or do we let things slide? If we do that, will our child become spoiled? It’s impossible to know the right answer, but we can only listen to our child and follow our instincts.

For Kathryn, the psychological aspects of cancer, fear of what is coming, port being accessed, or lying still for scans, etc. often are worse than the pain she experiences from a procedure. She doesn’t understand why this is happening to her, so helping her through those feelings is necessary so that she not only heals physically, but also emotionally.

There is no right or wrong with raising a child with cancer. We can only do the best we can under extremely stressful circumstances. Each parent knows what works best for their child, and as much as we question if we are doing it right, each way is unique.

Kathryn’s family gets much of their strength and support from their relationship with Jesus Christ. Their faith has helped them through this difficult journey. It doesn’t mean it’s easy, but it does mean that they have peace and hope.

They appreciate all the help and resources that various foundations have provided for them. They could not have made it this far without all the support.