Family Connections Program

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It takes amazing doctors and medicine to physically heal a child with cancer. It also takes social workers, child life specialists, music therapists, art therapists, therapy dogs, and other forms of therapy to emotionally heal a child and their family from cancer. This isn’t a quick fix. During treatment, many programs are available when a child is inpatient or in the clinic. Nick’s Fight to be Healed Foundation, along with many other practitioners and fabulous foundations, provide distractions and stress-relieving programs. These are just as important to help a child, their siblings, and family live a fulfilling life after treatment.

This idea of connecting our families outside of the clinic and hospital has long been a wish for our foundation. With the guidance of Courtney Hill, Licensed Clinical Social Worker and OSW-C (Oncology Social Work Certified), this is now happening.

On Wednesday, March 7, the pilot Family Connections program will begin. Its purpose is to bring families affected by cancer, no matter where you are in your journey, together to build community, share thoughts, feelings, ideas, and connections.

Karen Patchell, board member of Nick’s Fight to be Healed Foundation, is a Baptiste-inspired Registered Yoga Teacher for children and adults. She began the Flow to be Healed program at the clinic in February 2017. Fun games and simple poses empower a child to develop tools that help them move and use breath and focus to take their mind off any distractions or discomfort. Yoga improves their self-confidence and heals mind, body, and spirit. Children and siblings will have their own separate yoga activity and then parents, caregivers, and older teens will have the opportunity to stretch, flow, and decompress. Remember to wear comfortable clothing! That’s all you need.

Janine Cammarata is co-founder and president of Nick’s Fight to be Healed Foundation. She started the foundation in memory of her son, Nick, who passed away on October 26, 2008. Janine is a published author and teaches journaling for healing and self-awareness through her Write to be Healed program. Journaling encompasses so many different art forms and topics from daily events, junk journaling, goal setting, tracking, and buckets lists. But it can also be transformative, life changing, as well as healing.

This program is open to everyone in your family. We hope you can take advantage of it. The next one is scheduled for April 4. Below are some FAQs you might have. Please let Courtney know if you can come, so we can have enough supplies for everyone.

It takes more than medicine to heal and together we are stronger.

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Dance Celebration

Oh what a night! Glen Sanders Mansion was beautifully decorated for Nick’s Fight’s 3rd Annual Dance to be Healed Celebration!

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Angie Silipigno, her girls, and Courtney Hill did an amazing job decorating the tables with red and pink leis, hats lined with hearts, fun eyeglasses, purple beads, with votives and mirrors provided by the staff. Red lights lit up the walls and photos of our families dancing from previous dances lined the room.

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The children and young adults looked beautiful and handsome. The little gals were very excited to get their hair done by Courtney and Jackie of Pixie Salon and makeup done by Ebony Muniz and Autumn Wright, and they twirled in their dresses and fancy shoes. Family photos were taken by Elizabeth Fox Photography. Many memories were made.

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Courtney of Pixie Hair Salon styling Maddie’s hair!
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Jackie of Pixie Hair Salon curling Regan’s hair.

For the third year in a row, Mo Haskins of Cool Cat DJ played music that kept the kids on their toes. Cameron knew every word to each song and danced around the floor interacting with everyone!

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Managed to get Cameron to stand still for a photo!

Ali was adorable! He is Nick’s Warrior for the run this year on September 30! Mark you calendars! His sisters Sara and Asma volunteered with Nick’s Round Table along with many other teen volunteers.

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Savannah and Maya hung out at the kids’ table doing activities.
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Nick’s Round Table Teen volunteers!
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This table was packed all night!

Little Lucas danced all night and learned the sprinkler and mashed potato dance. Abby and Regan were inseparable. I loved seeing Brittney, Kacey, and Kendra–incredible young adults giving back despite their journeys.

I enjoyed talking to all the families and am grateful many were able to come and feel the love of family. For those who couldn’t come, you were missed, but we will see you at upcoming events. When I peered around the room, I saw children at the craft table, others were at the Open Box Photobooth sponsored by Christina Primero. They ate quickly and stayed on the dance floor. Parents, Melodies’ staff, friends, and extended family connecting and supporting one another, enjoyed their time together. This is my favorite event!

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Joe Santoro, Lucas’ dad, and George Sisco, NFTBH Board member, Kendra’s dad are both getting in the spirit!

Thank you to all the generous sponsors: Maddies’ Mark who sponsored all the families, Play it Foreward for the photobooth, Maria, Lucien, and Nancy from Glen Sanders Mansion for doing a beautiful job, Elizabeth Fox Photography, and Out of the Box Photobooth.

 

The Power of a Parent’s Words

The heart of a grieving parent is never healed. We don’t know how we can live with such a tragedy until we are in it. So often we exist in a state of wishing to be happy and drowning in sorrow because of our loss.

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Justin-a warrior who we lost 1 year ago today.

Today marked one year since a beautiful and courageous young man lost his life to cancer. Justin’s mom is feeling the pain I felt nine years ago on Nick’s one year angelversary. We can’t take the pain away, but can only let her feel our love and comfort. Everyone grieves differently, but a parent’s grief is soul deep.

It was appropriate that today I shared my book about Nick’s journey at my book signing. Even as I feel gratitude for everyone who came and spoke with me, I feel sad, because my number one fan isn’t right here with me.

When I started Shimmer’s Eggs, it was a creative memoir about my boys’ lives. After Nick passed, writing this book was a cathartic journey for me to understand what it meant to no longer have Nick. Losing him changed the ending, and I would never have written the same book if he had lived.

I know this book helps others. It’s difficult to feel joy when there is so much pain. But as Justin’s mom wrote today, she has much to do and knows her son waits for her. Her words helped me tremendously today, even as she is hurting.

As much as I miss my boy, I also have much to do. I have hope and love to share. I know that whatever choices I make, and however I choose to help people, Nick would approve, because it comes from my heart.

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Nick, 2008

Thank you to everyone who holds me up and supports my mission and message. It keeps Nick’s spirit alive just as Justin’s amazing mother shares his beautiful spirit. They both are missed today and always.

3rd Annual Dance to be Healed

All it takes is one moment in time when someone opens their heart and gives all they have. The connection between a nurse and their patient can be life-long for a child battling cancer. That nurse is the safety rope that prevents a child from falling over the edge in fear.

When Abby Sayles’ mom mentioned to Abby’s nurse Matt that her daughter wanted to marry him a chain of events started that have cumulated into a night of Courage, Hope, Love, and Life.

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Abby and Matt at the Abby & Matt’s First Dance

This celebration is one of the most important events that Nick’s Fight to be Healed Foundation sponsors. It’s a celebration, a dance, and a time for families to dress up, be together, and forget about cancer.

We want you to be with us. This dance is free to all children and their immediate families who are currently battling cancer or have finished treatment. For a small donation, it’s open to other friends, families, and anyone else who wants to join in the celebration.

Special thanks to our fellow foundations and volunteers who are donating their resources to make this a night to remember: Maddies’ Mark, Play it Foreward, Cool Cat DJ, Outside the Box Photography, and Elizabeth Fox Photography. And a grand thank you to Glen Sanders Mansion, who is sponsoring the room and many fun surprises!

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Registration ends on January 29, so get your tickets today!

Dance to be Healed Registration

Annual Donation to The Melodies Center

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Nick’s Fight Board L-R: Liz Carr, George Sisco, Colleen Williams-Wright, Dr. Lucas (Director of Pediatric Oncology), Angie Silipigno (Child Life Specialist, Melodies Center), Janine & Lucas Cammarata, Jonathan Isaksen, Annette Romano. Not in photo: Karen & Mark Patchell, Ann Frantti, Angela Chieco & Susan Sukols

A heart full of love and time spent helping others is a good day. When we come together to share the fruit of our board and community’s hard work that is a fantastic day.

On Thursday, December 14, Nick’s Fight to be Healed Foundation donated $25,000 to the Child Life Specialist position at The Melodies Center at The Bernard & Millie Duker Children’s Hospital at Albany Medical Center. In addition, we donated $15,000 toward technology needs in the new teen technology room that is currently being built in the pediatric oncology clinic.

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Lucas Cammarata, Angie Silipigno (Child Life Specialist), & Janine Cammarata

Lucas and I, as well as Annette, have seen first-hand how important and vital the child life specialist is to the children and teens being treated for cancer. They balance the medical and emotional needs of each patient. Angie is the only child life specialist in the clinic. There are more on the in-patient floor, but Angie meets every single patient as they are diagnosed. That’s 90 new patients a year, but includes all the patients who come for treatment from the previous years and check-ups from the years before that! Approximately 900 children, teens, and young adults are seen at The Melodies Center each year! Angie treats every single one of them as if they were her own. She feels their pain, revels in their successes, and holds them all in her heart. She is a major reason why we work hard all year to raise money.

Nick’s Round Table has raised money for the Teen Tech Room, and it is another huge need that we can’t wait to have filled. Teens and young adults with cancer are often in a transitional part of their life. Some are going through puberty, some are starting college, some are starting careers or life with a partner/spouse, but suddenly they are thrust into a world where they aren’t sure where they fit in. A teen/young adult’s life has not only been disrupted, but displaced.

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Nick’s Round Table L-R: Becca Abel, Angie Silipigno (Child Life Specialist), Katie Kelly, Sarah Olsen, Brittney Decker, Grace & Claire Isaksen, Rob Saba (Dir. of Development, Grateful Patients and Families at AMC)

Having this teen/young adult haven will give this specific age group a space to decompress and connect to their life outside of cancer. It can be a space where they can bond with others in their situation and hopefully feel the support we have for them and every other child diagnosed.

It was a busy year for us with families in need. Over $25,000 granted in financial assistance, $2,400 in gift cards for patients and families, $9,000 for Family Hope Bags, $2,000 in Nick’s Comfort Bags. This doesn’t include holiday support, magazines, DVDs, video games, arts & crafts, and anything else that comes to our attention. The time and effort that our board and volunteers put into making this all come together cannot even be counted. Board member Karen Patchell visits the clinic once and sometimes twice a week with Chloe our therapy dog and also to do yoga. The children absolutely love her!

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Amelia & Bella love yoga!

I couldn’t be prouder and more thankful for everyone who makes up our foundation. It’s important to sit back and absorb our accomplishments this year and since the beginning. Nick Cammarata and Luke Romano are surely proud of all we have done in their names.

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Thank you to everyone, and we look forward to continuing our mission in 2018.

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.

Holidays

Woke up this morning not really excited about Thanksgiving. Part of me wants to stay in bed and avoid the day. Why? I think back on my dreams. Nick visited. Reality hits. Oh yeah. Sadness. No matter how many years go by, sadness, regret, loss, and pain will always be there on a holiday.

I think about the families who are having their first Thanksgiving without their child. For the first two or three holidays, I set a plate at the table for Nick. I needed that space for him to know that we would always love him and he was remembered.

I also had a candle burning near a photo of him and my dad welcoming them. We have Thanksgiving at my sister, Michele’s house. She gave me that space and knew we needed it. That is key to being with grief, and I love her for that.

Then after a while I didn’t need that space. It wasn’t because I forgot Nick or got over the loss. Neither will ever happen. I learned that his place is within and around me. The photo and candle stayed adding a photo of Luke’s dad when he passed.

Now I think of Nick. I remember stories of him, his funny faces, and smile.

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His love of cream puffs and Grands. The joy all the kids felt being together. It’s not the same. It never will be. So on my holiday mornings, I spend time with Nick. I write to him. I be with him as he is now. When I can come the holidays like that, then I can be with what is. I can find joy in the moment, right now.

Just like I make sure Nick and I have that special time together, I do the same with Stephen, Luke, and my family.

If you are missing your child today or any loved one, give yourself the time to be with them. Take those precious moments to feel their light and let your feelings flow. Then be with those who are sitting around your Thanksgiving table and soak in their love.

Wishing everyone a peaceful Thanksgiving.

We are There for You

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Know we are here for you.

The uncertainty of cancer can often be the largest stressor when your child is diagnosed. Not knowing if the treatment is working, how you will get time off from work, what the prolonged separations will do to your other children or your family unit, or where the money will come from to pay the growing bills.

Within a month of Nick being diagnosed, my friend Jen at the library said that Gina from the Catie Hoch Foundation wanted to give us gas and food gift cards. I was floored that someone would want to help a total stranger in such a basic way. We were OK, and I didn’t think I should take it when others probably needed it more.

Gina came to the library and gave me the cards. I learned something that day. Sometimes people know what you need more than you do. I accepted them, thanked her, and knew she was there if we needed anything else.

I used the cards when the daily trips to the hospital and doctors took their toll. It helped us financially, but it did more than that. Her outreach gave us that sense of community, of being cared for, of being seen, and comforted.

I never thought I would be in the same place that Gina was with her foundation. Yet here we are. I have always remembered that sense of camaraderie I felt from someone who had been on the same road as me. One of the first services Nick’s Fight to be Healed provided was financial assistance to families. Just in the last month we have supported families with gift cards for food and travel. We have paid to keep the heat on and for mortgages.

These are essentials that everyone needs to remain healthy, safe, and secure. Providing these services reduce stress, but these acts do so much more. When we send a gift card with a handwritten note, we really mean it when we say we are here for you. In addition to assisting with the financial details, we are a shoulder to cry on, an ear to listen, arms to wrap around you when the journey feels impossible. We are kindred spirits who have been where you have been. And even if we haven’t, as people fueled by love, we open our arms to you.

It takes more than medicine and stress reducers to get a family through a cancer diagnosis and back on the road to life. It takes people who will dig deep no matter how painful to show our families that they matter, they are cared for, loved, and valued. That they are human beings going through one of the hardest times in their lives and sometimes just need a simple hug. Or a tap dance and kiss from Chloe, our pet therapy dog.

I am so very proud of what our foundation does, as well as what the other foundations do to give back and raise up our beautiful families. Today I send out a big hug to everyone who needs it and an even bigger thank you to the selfless volunteers and staff who give their hearts, because they simply couldn’t do it any other way.

Giving at the Table

First, I want to give thanks to Karen Patchell, one of the original board members of Nick’s Fight, yoga instructor, and pet therapist, for the clinic for making all the arrangements for our Thanksgiving holiday bags. She is such an integral part of this organization that it literally wouldn’t run without her.

Last Friday Karen and I attended a Spring into Health cooking class, which focused on healthy vegetarian options for Thanksgiving. It was in the chef’s house (Anouk) and not only was her kitchen amazing, but she and her cooking partner, Danielle, were warm and welcoming. It was like coming home from a long trip and being wrapped in a warm blanket and given hot chocolate.

When we came to the table, there wasn’t a rush to chomp down the food and get to the next thing. We savored each dish, gave thanks for being together with some people we knew and others who became friends over dinner. It made me think about how I came to the table. Do I give thanks for the food I eat or do I treat it as something to get done?

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Food is an integral part of our life. Having a full stomach and being nourished sustains our mental and physical well being. Eating delicious together can also be healing. When we sit together in a loving, grateful manner and take the time to savor our food, it becomes a happy and wonderful experience.

After I ate dinner with so many fantastic people, I was happy. I ate healthy foods and felt a sense of community.

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Annette Romano, fabulous board member, and amazing volunteers hard at work.
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Brittney Decker, President of Nick’s Round table, her friend Sonya (left), her sister Lindsay (right) volunteered their time to help out!
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Karen Patchell opening her home to organize the assembling.

This is exactly what these wonderful women set out to create and provide for our families at The Melodies Center. They lovingly put together bags of food that will provide satisfying Thanksgiving meals for our families battling cancer. They understand that giving at the table as well as giving of their time is a heartfelt way to make others lives easier. To give is to receive happiness.

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So from our foundation to your table–we wish you a Happy Thanksgiving and a month filled with goodness, kindness, and positive steps to a healthy family.

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Placed Beside Me

Nick was a Lego maniac. He was constantly putting sets together and making his own creations. I have his finished products all over the house.

Today in yoga, the instructor spoke about surrendering in the twist and letting go of what didn’t serve us or was weighing us down. I wasn’t sure what it was I needed to let go, but her words resonated with me.

When I came home prepared to clean, I looked at all the Legos on my bookcase. At the bottom were my journals spilling over onto the floor.

Was it time to get rid of Nick’s Legos? Stephen packed his away before he went to college. One of the difficult parts of losing a child is that I don’t know what Nick would want. He loved technology, video games, reading fantasy. Would he still be into all of that?

It’s the unknown that leads to the what if’s, the second guessing, regrets, and inability to make a decision.

I have learned that what I cannot quite let go, I can place beside me so that it no longer plagues me with sadness. It’s so hard to remove something that was important to my son. The amount of possessions I keep of his doesn’t measure my love for him. That I hold in my heart always. His creations are a reflection of his personality. Sometimes I smile when I see them. Sometimes I cry.

I decided to pack his creations in their form he made into a bin and place them in the basement with all the other toys I have kept of my boys. I took photos first.

Maybe some day I will want to look at them again. Or maybe Stephen’s children will get to know who their Uncle Nick was and make new creations out of his classic Legos.

I don’t know, but I want the choice. And the space I created on that bookshelf? It’s more about the lightness I feel in me, which will allow me to write to and about my boys. Those shelves will hold those journals.

Shen Goes Gold

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L-R: Ron Agostinoni, Sarah Olsen, Kaitlyn Gilbert, Brittney Decker, Don Flynt, Amanda Hayes, Janine Cammarata

Today many at the Shenendehowa Central High School wore gold for September’s Childhood Cancer Awareness Month. Gold ribbons were handed to hundreds of students and Brittney Decker, president of Nick’s Round Table, spoke about the importance of raising awareness and the purpose of the garden.

Don Flynt, who was the principal at High School East for 20 years retired last year, and I had the pleasure to meet the new principal, Ron Agostinoni. The first thing Mr. A (as the students call him) mentioned to me is that he knew one of the kids whose picture surrounded the garden–Emily. He is good friends with her family and felt an instant connection to our cause.

He then said that he and Mr. Flynt met a couple times over the summer to help with the transition. He figured Mr. Flynt would start with all it took to run a school. However, one of the first topics mentioned was Nick’s Round Table, the importance of the Memorial Garden, and our mission to help kids fight cancer.

 

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Don Flynt honored because of his commitment to his students.

Today, in addition to raising awareness for kids battling cancer, we dedicated a stone labeled with the word ‘commitment’ to Don Flynt. He recognized that in the midst of tragedy, our young adults needed a way to take action. He provided the space, tools, and platform for them to be empowered to help others.

Don Flynt has always shown compassion and integrity, and I believe Mr. A has the same qualities. We look forward to working with him.

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For all of our children who are in the midst of their cancer battle, we are right beside you. For those who have beaten this disease, we are ecstatic for you. For our children who have gone before us, we will never forget you and keep fighting in your name.

September is Childhood Cancer awareness month, but every day our kids struggle with this disease. Make a difference today.

Self-Care

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The countdown for Nick’s Run is 7 days. It’s been a whirlwind of finalizing all the details and promoting the event to make it the biggest one yet. Part of the promoting is being on the radio and TV. I had the pleasure to talk with Marc Kaplan with Siena’s station 88.3.

One of Marc’s questions was what advice would I give to anyone whose child is battling cancer. What advice for the parents? My biggest advice, which is also the hardest to act on is self-care.

For the four months that Nick had cancer, we were in the hospital a lot, and I usually stayed with him. Stephen was only 10 and wanted his dad. I didn’t exercise, I barely left his room, and my diet was terrible. I remember wishing that someone would come and pluck my eyebrows. I was afraid that if I wasn’t there something would happen to Nick. A couple times Luke stayed, and it was wonderful to spend time with Stephen, but I often felt that my heart was split.

Imagine doing this for years. Any parent would do the same and eventually it takes a toll on our bodies, mind, and spirit. It also affects our ability to make decisions. I think I was on autopilot, and taking a break even to sit in silence or do the yoga practice that I do now would have benefitted all of us.

So during this month of Childhood Cancer awareness, we know that taking care of your sick child is the priority. But remember to take moments for yourself to read a book, write in a journal, take a walk, do yoga, exercise, and eat well. Do what nourishes you and gives you moments of peace. It will make a difference in the long run.

What are other suggestions for self-care?