Dancing in the Woods with Family

 

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Family. They come in all packages and sometimes when you least expect them. I saw Dr. Joanne Porter who was Nick’s oncologist at the 34th Annual Dancing in the Wood gala for The Melodies Center at The Bernard & Millie Duker Children’s Hospital at Albany Med.

I literally hadn’t seen her in months, and it was like I had seen her yesterday. When Nick was diagnosed, she said she was married to us now. Whenever we have needed her, she has been there. That’s family.

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I had no idea that cancer survivor and extreme frisbee player extraordinaire, Matt Bissett, was going to be at the event! Turned out that his entire family was there including his beautiful wife. They were in the video along with three other survivors. It was like a homecoming and family reunion all in one. To see Matt healthy and glowing makes all the hard work worth it. This is why we do what we do–to make sure our children and young adults grow into healthy and positive adults. His family had a wonderful time and my heart grew watching them all dance.

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Having some of my tribe attend is always a plus. They already know how important the mission of Nick’s Fight is, but when you connect it to the larger picture of how many children The Melodies Center supports, the need grows. 900 children a year are treated there and this event is only one of the many that raises awareness and funds.

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Family grows and builds as we look past the diagnosis toward having fulfilling lives post treatment. Kendra Sisco and Kacey Sisco (no, not related, but both cancer survivors) are doing just that. Staying connected to the staff and organizations who helped them through the hardest times in their lives is essential. I’m very excited to be offering more opportunities for connections in 2018. But the fact that they support each other is fantastic and emotionally important. Staying connected in any family is hard and for our cancer families absolutely vital.

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Two of some of the hardest working people at the hospital, Rob and Angie don’t slow down when it comes time to gala and event hopping. They balance work, family, and fundraising to raise awareness and much needed funds. Part of our purpose for attending these events is to show our support and express how important their roles are. Angie Silipigno, Courtney Hill, and the nurses, and other staff who help our kids every day at the clinic are truly superheroes who go beyond what their job entails. They stand true to what they believe in–the patients who are battling.

This year’s event was a true testament to a group of people working together to make change, raise awareness, and celebrate life. We are fortunate to have family who keeps us going and understands what it means to keep dancing through the woods toward a happy and healthy life.

Community

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It starts with devastating news and your world shrinks in on itself as you realize that nothing will ever be the same. Your perspective shifts and what use to bother you is no longer relevant. You cherish those precious moments with your children, your spouse or partner, family, and friends, because they may never happen again.

Then you are joined together with the staff at The Melodies Center and your world gets a tad bit bigger and you are held tighter by a larger circle. Then those who have walked in your shoes reach out and take your hand, and you finally appreciate the unbelievable community that has taken you in and feels the same fear, pain, worry, and heartbreak with you.

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This community also cheers you on when the news is promising. They are your biggest fans, your strength, your rock, your cheerleaders.

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And no matter what they have going on, when you need them, they are there for you 100%, no questions asked. They hold you up. They are your foundation. They come from all walks of life, because cancer doesn’t care how rich, poor, tall, short, successful, shy, or healthy you are.

But we care and that is what makes all the difference. There are volunteers who have put aside their own problems, sadness, losses, and hurts to help raise others who are at their breaking point. This is community. This is what keeps me going. I am thankful for everyone who helps with our fundraisers and especially this run.

Register now for our 8th annual Nick’s Run to be Healed 5K. Tomorrow is the deadline to get the dri-fit shirt. For sure that is incentive.

But really what matters is that we all will come together as a community and be there for one another. That is what we do for no other reason than because we care and September is our month to raise awareness.

www.fighttobehealed.org

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.

 

 

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.

Love for Liam

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Liam has had a long and hard battle. He has relapsed twice and had to go to Rochester for a bone marrow transplant. We are lucky in that Golisano’s Children’s Hospital is an option for transplants, and young adults, such as Kayla, who go to college in Rochester take it upon themselves to bring comfort bags to patients and visit. Kaya met Liam and helped him get through that hard time.

I first met Liam and his mom when he was inpatient at The Melodies Center in Albany. I walked in, and Liam was watching a cartoon show on TV. He was totally engaged in it, and so I talked to his mom for a bit about our kids, what Liam was going through, and just life. Parents need a break to take care of themselves, reset their frame of mind, and get fresh air. I remember never wanting to leave Nick, and the only time I did was if my husband was there with him. I felt like I had to do everything, and it wore me down.

There is nothing wrong with taking time to go for a walk, getting coffee with a friend, finding a quiet spot and breaking down. If we don’t take care of ourselves, then how can we be mentally and physically fit enough to care for our sick children and make critical decisions? It is not something a parent should feel guilty about and yet we still do.

As we spoke, I pulled out a Lego set, and BAM! Liam’s eyes caught mine, and his face split into a huge smile! Apparently I hit the jackpot. Liam loves Legos. It takes a small gesture, the touch of a hand, a hug, a gift, or a word of encouragement that can make a child’s day brighter. I also gave Liam’s mom and his sister some lotion and body spray. Nothing like some body care products to brighten a gal’s day! But to have something fresh and new to give hope is so important!

This is why we work so hard–to bring a smile, to give hope, to make a positive difference in someone’s life. Liam’s mom knows that these kids are the strongest, bravest, and wonderful fighters. This is a common theme that all the parents have said about their kids. They endure more than most grownups could. They are true heroes. Seeing other kids getting through their journey and thriving, the medical staff, and their faith helps.

Of course visits from friends and someone reaching out a helping hand can go a long way. What can you do today for someone you know battling cancer? Don’t wait until tomorrow or think that someone else is doing it. You don’t know how your caring gesture might impact that person. Show love. You may just save their life.

Markel–Living Life Her Way

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Imagine being in the midst of your college life, finally reaching toward independence, figuring out who you are as an individual, having fun meeting new people, and suddenly you feel that something is wrong. As an athlete, Markel was in good shape, but she began to feel ill and out of breath.

Now imagine that she is immediately thrust into a world of cancer, horrid medicines, no longer attending classes, and has to depend on her family once again. Her brush with college life and all the fun and self-discovery that goes with it has been shattered.

But Markel now has a new path of self-discovery. Yes it’s one she never would have thought to venture down, but has done so with her head held high, with a positive perspective, and always a hand reaching out to help another child, teen, or young adult battling.

I always see photos of Markel giving back with fellow cancer survivors like Rachael Murray and her Trending 4 Fashion show, or I see photos of her at the clinic with other survivors like Dante or Justin. Her smile makes you feel like everything is going to be all right as she gives you a big, warm hug.

Markel has had her ups and downs with her treatment. The complications have been numerous, including infections, seizures, and allergic reactions to transfusions. Markel was in remission, but in June 2015, she relapsed and on October 7, 2015 (which is Nick’s bday), she had a bone marrow transplant. Even out in Rochester, Nick’s Fight supported Markel and her mom and volunteers visit. Markel’s final biopsy showed no leukemia or Philadelphia chromosome present!

Markel knows that the support from staff at The Melodies Center, family, friends, and new cancer family friends helped her get through. Her family’s faith gave them the strength they didn’t know they had.

So where does Markel go from here? Children are extremely brave and strong whether they are 1 or 20. Markel knows that help is needed. Advocacy, funding, research, and education are essential for finding cures and making treatment less invasive to reduce long-term side effects.

Along with taking college courses, Markel takes action by volunteering for St. Baldrick’s and other events that raise money to help children and young adults fight cancer. Markel is part of our world’s future. That thought makes me smile very brightly, because I know we’ll be in great hands.

Happy 5th Birthday, Chase!

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Chasing away Leukemia. That is what Chase has been doing since he was a one month old baby. His mom had brought Chase in for his shots and the doctor didn’t think Chase looked right. They did an ultrasound and his liver and spleen were 3x their size.

It took 15 times to draw blood because his blood was a big clot. Finally, his parents found out that he was 98% filled with cancer blasts and his white cell count was 1.8 million. The doctors had never seen that high of a number in an adult! The doctors didn’t feel that Chase was going to live. An emergency christening was performed and that night his mom held her baby tight. She woke up to him screaming and that was when she knew they were in for a fight.

Chase’s family went from Syracuse to Albany to be close to The Melodies Center that would treat him. They stayed at the Ronald McDonald House in Albany, which has been like a second home to them through the years.

Chase has endured mouth sores, fevers, infections, and illnesses. He had chronic C-diff. He couldn’t tell his parents what was wrong. He just cried and cried. They had to permanently move to Albany. Two years later Chase ended his treatment. The family could finally get a chance to lead a normal or at least simpler life. 6 months later as his mom tried to go back to work, Chase went to the doctor for anemia, which in itself wouldn’t be big deal. For a child who has had cancer, turned out it was. Chase’s cancer was back.

This time he had to have a bone marrow transplant. Chase knew what was going on and in his mind his parents were putting him through this. He didn’t understand why. The hardest part about being a parent to a child with cancer is knowing that they will have pain and further sickness to heal. You have to sit back and watch. It’s only natural for a child to take it out on their parents because of unconditional love, but that doesn’t make it any easier to take.

This family has been separated, transplanted from place to place, Chase has suffered so much dealing with horrific side effects such as Graft vs. Host disease. Everyone suffers with him, because it’s so much to bear and witness. I can’t imagine the emotional rollercoaster that the whole family has gone through over and over again.

I have seen cancer tear families apart. It has broken marriages. It has ended lives. But Chase’s family stands strong amidst the rubble and battle. No it has not been easy, but they have done everything needed to be done in order to do the best for their little boy. That may not have been what has been best for everyone else, but they did it because that is what family does for each other, no matter what.

The community’s emotional support has also been outstandingly positive. Everyone who  helps this family, shows up big time. It doesn’t matter what it is. The need to ease this family’s pain and show Chase and his siblings that the world can be a great place is strong.

Chase proves this every day. Today is his birthday. He has shown that with persistence, prayer, lots of love, and amazing medicine, he is a miracle. He is a beautiful and courageous boy who is here to make an even bigger impact on this world than he already has. Happy Birthday, Chase! May you have tons upon tons of more happy days!

New Leaders in Camelot

Featured is our Nick’s Round Table board for 2016-2017. From L-R: Brittney Decker (Volunteer Coordinator-Shenendehowa), Sarah Collins (Fundraising Chair-Shenendehowa), Becca Abel (returning Secretary-Albany Academy), Grace Isaksen (Media Chair-Burnt Hill-Ballston Lake), Dylan Nezaj (Vice-President-Shenendehowa), Ruben DeMan (Treasurer-Shenendehowa), Emily Hayes (President-Shenendehowa), Leanne Shockley (Arts & Crafts Chair-Shenendehowa), Amanda Hayes (Technology/Publicity Chair-Shenendehowa).

Six years ago Stephen and a group of motivated teens who were friends of both Nick and his brother formed Nick’s Round Table. I could write a book on the amazing work that this group has done. They have grown from a few to an army and they take battling cancer seriously.

We have had so many wonderful volunteers who have grown into leaders and have chosen a career in healthcare or helping children because of the work they have done with our foundation. That is inspirational and gives me hope that this world is a beautiful place.

I have to thank last year’s board (Katie, Kendra, Erin, Lauren, Liz, Maddy, Amelia & Kate) who are going to college, but luckily we have a few who are still involved in the foundation and are building new leaders.

What I love about this group is that the board and the entire membership are from different schools, communities, and walks of life. Some have battled cancer, been treated at the Melodies Center, have lost loved ones to cancer, or known someone battling. Still others get involved because of a friend bringing them to a meeting, but soon they become attached to the mission.

Our future is bright because of the incredible number of young adults who care. That is what the round table is all about. Everyone equally coming to the table to help those in need. I am excited to venture into another year of healing and helping and can’t be more grateful for all the beautiful, kind-hearted people who have come into my life through my son’s journey. Surely the people he puts in my path daily are kisses and hugs from him.