Hope in a Bag

In 2010 when I started interviewing families to write my book, What Makes Them Amazing: Inspiring Stories of Young Adults Fighting Cancer, I didn’t know that it would also initiate positive and comforting services for our families at The Melodies Center.

I still remember interviewing Nick Bowen and his mom, Carol. At age 11, Nick was rushed to the hospital after he passed out in the tub. He was diagnosed with a brain tumor and stayed in the hospital for weeks. Carol said, “All I brought with me was my pocketbook and my Bible.”

We don’t plan to be told that our child has cancer and not be able to go home. That was how the Nick’s Fight to be Healed Family Hope Bags developed. We thought, What would a family need for an emergency overnight stay at the hospital? Ideas for what this bag would contain came from an amazing warrior, Luke Romano. Luke dealt with cancer for seven years, so was an expert on preparing for hospital stays and what a family needs. Usually one parent has to stay with their child, so the Family Hope Bags are geared to support both. The “Red Bag” is delivered by the child life specialist or social worker when a child is diagnosed and inpatient.

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There are essentials like shampoo, conditioner, body wash, lotion, hand sanitizer, hair brushes, toothbrushes, toothpaste, deodorant, hair ties, laundry detergent, and chapstick.

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Being in a hospital and facing cancer is devastating, so we focus on making others comfortable. Having cozy socks, eye pads to block out the light, headphones to listen to music, a journal to write your thoughts and keep track of doctor notes are all included.

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Hope and the connection is brought about by including a letter from a local family who has gone through what this family is now going through. We know how scared our families are and to have hope given by someone who have been there is priceless. This year we also had kids from Niskayuna Elementary School writes cards of comfort that are placed in every bag. They are thoughtful and compassionate notes.

Family Hope Bags are our most time consuming project, but it is also the most worthwhile. Besides the wonderful staff at The Melodies Center, these bags are the first line of comfort to get a family emotionally, financially, and physically through cancer treatment.

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Everyone calls them the “Red Bag.” Surrounding this black front with white logos is a red duffle bag that families can carry back and forth to the hospital. Our wonderful sponsors donate gift cards to Starbucks, Dunkin Donuts, the cafe at the hospital, Panera, and the Recovery Sports Grill provides gift certificates to their restaurant. We couldn’t do this without them.

Annually, the Southern Saratoga YMCA has a drive to collect essential items and it makes a huge difference.

In addition to these initial gift cards, Nick’s Fight to be Healed provides gift cards each month for ongoing treatment that Angie, the clinic child life specialist, and Courtney, the social worker, hands out to families. Reducing stress is key to healing.

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Emily Hayes, President of Nick’s Round Table, packs bags with all the supplies donated by our local sponsors, Nick’s Fight to be Healed, and Luke’s Legacy.
It takes hours of shopping, separating, copying, folding and packing these bags before they can be brought down to Albany Med. Between 70-90 bags are given to families each year.  That means up to 90 children are newly diagnosed with cancer each year just in our area. We have a lot of work to support our families and we do the best we can.

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Amanda Hayes, Technology Chair for Nick’s Round Table, is at the other end of the assembly line.
Teens from Nick’s Round Table, along with their amazing leader, Annette Romano, shop and pack all these bags. It’s a daunting task, but they do it with joy on their faces, because they know how much these bags mean to families.

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Dylan Nezaj, Vice-President of Nick’s Round Table, lends a much needed hand in organizing the Family Hope Bags.
It takes more than medicine to heal a child. It takes love, in-hospital services, comfort, and hope. Nick’s Fight to be Healed Foundation does this and needs your help to continue.

If you would like to donate gift cards from Target or Walmart to purchase supplies for these bags or gift cards in $25 increments to Starbucks, Dunkin Donuts, Panera, or CVS, please mail them to:

NFTBHF, Family Hope Bag Program, PO Box 217, Rexford, NY 12148

If your company would like to sponsor this program, please contact Annette Romano at aromano12@nycap.rr.com

Thank you to our volunteers, our sponsors, and everyone who helps us in our mission.

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.”

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.

 

 

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.

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!