On Acceptance – The Stories Between

Cancerversary

Editor’s Note: We are always amazed at the resilience and positive approach that so many families living with cancer are able to adopt. How a potentially fatal diagnosis can be turned into a Silver Lining in their life and one they end up being grateful to have endured. We feel these stories can serve as inspiration no matter what your struggle might be.

Today is the cancerversary. Four years ago today the doctors came to Sophia’s hospital room to check in with us. We were waiting for their visit. Sophia had been brought in the night before, the cause of her illness yet to be determined. We were prepared to hear that she’d had a reaction to medication she’d been taking a few weeks earlier. Nothing prepared us for what was said next, “Why don’t you come with us to the conference room.” We were told Sophia had acute lymphoblastic leukemia and that she would begin treatment right away. It was a lot to take in and honestly the first week was a bit of a blur. What I do remember very clearly was the love and support we received – it seemed as if each day brought a new blessing.

Our friends and family went into overdrive. My sister was by my side every day with soy lattes, bistro boxes and laughs. Sophia was showered with gifts from family, friends and people we didn’t even know. Her name was added to prayer lists in Catholic, Episcopal, Methodist, Lutheran, Jewish and non-denominational churches and synagogues. The support truly helped us get through the difficult times.

They say a family trauma has the potential to break a family apart. Sophia’s cancer had the opposite effect on us. The five of us became even closer. Our time together became incredibly important. We adopted mindfulness as a way of being in the moment and cherishing each other. Even today, we try to have dinner together every single night, working around sports schedules. Some nights it’s diner at 4:30, some nights it’s 7:30. But we sit together in gratitude and share the best or funniest thing that happened to us that day.

For a while, we would categorize our lives as BC (before cancer) and AD (after diagnosis) as if we had lived two very different lifetimes. The first being a time of innocence and joy, the second being reality. Remembering an event or date we’d say, “That was about one month BC” or “That must have been about 3 months AD judging by her hair.” We don’t do much of that anymore. The whole cancer diagnosis seems to have been woven into our family timeline so tightly that there no longer seems to be a before and after – only a continuing story.

I love our story and I’m fairly certain each one of us, even Sophia, would agree- we wouldn’t change a thing. On this fourth cancerversary, we will celebrate our many blessings, grateful for each other and all those that are a part of our lives. There may also be some ice cream involved.

Jane McCaul is an Area General Manager for Chesapeake Hospitality. She manages two Baltimore-area Hackerman-Patz Houses which accommodate patients and family members of patients undergoing treatment at local hospitals. Jane lives in Baltimore with her husband John, their 3 children Christina, Jack and Sophia and their dog Ginger. After 3 1/2 years of treatment Sophia will be entering middle school in the fall – happy and healthy. She is very active participating in sports year-round (field hockey, basketball and lacrosse) but her favorite activity of all is playing in the ocean. She recently got a new surf board that she can’t wait to try!

February: The Month I Love to Hate.

February sits smack dab in the middle of winter, when the skies are grey, the trees are bare and it’s cold outside. You go to work when it’s dark and come home when it’s dark. No neighbors are outside to chat with, the kids are bored inside and although the days are short, they seem to drag on and on….

Every year for the past 15 years, I brace myself for the arrival of February. Chelsea, my beloved daughter, passed away on February 10, 2001. It was only 15 days before her 10th birthday. So every year, in February, I celebrate her life, and mark her death. You would think that after 15 years it would get easier. Some years have been easier than others, but when you lose a child, the heartbreak never truly goes away. Yes, you learn to live with it. You learn to smile and laugh again. There is even joy to be found, but when thoughts drift to her, it’s just…hard. Would it be different had she died in the spring? I doubt it, but mid-winter only exacerbates the emotion that is as grey as the sky.

What should I do on February 10th? Some years I’ve taken off work, stayed under the covers and wished it would all go away. Pity parties don’t help, but sometimes the tears just fall regardless of how hard you try to not let them. Other years, I try to celebrate her life, remembering the good times and how sweet she was. I can look at pictures and watch home movies, but still the tears…. Sometimes we’ve gone on an adventure she would have enjoyed. Another year I was on a business trip and was so busy that I didn’t remember until I wrote the date. I almost panicked. It made me feel like a terrible mother. Then my own mother called to check on me and I broke down into a million pieces.

I used to struggle with terrible depression in the winter. One doctor diagnosed me with SAD: Season Affective Disorder. He suggested I try light therapy. I diagnosed myself with SAD, but I was just that, ‘sad.’

Then, there’s February 25th, Chelsea’s birthday. This year she would be turning 25. That’s hard to imagine… This day is a little easier. We always get a cake, sing happy birthday, then write messages on balloons and let them go. I love to see what Ethan and Charlotte, (my son and daughter who came after Chelsea passed away) say and write to her. They never knew her, but she is every bit a sister to them as Ashley, my oldest daughter. They talk about her like they did know her. Hopefully, because we all have talked about her so much over the years that they feel like they do. I love when they ask questions about her.

Now, when the holidays are over, and we round the corner into the new year, I see it in the distance. I know it’s coming and I try not to fear or dread it. It’s a time to remember Chelsea and celebrate the life she lived. I don’t make any definite plans as to what I’ll do or how I’ll feel, because every year is different. Awareness and acceptance of my feelings is what has made the difference. It’s okay to feel sadness and even pain, because even though it hurts, it is healing. The most important thing is to let yourself feel – all of it – the good, the bad and the ugly. Grief is a process and there is no time limit. It really never actually ends.

The best part is that after February is over, spring arrives. A renewal and rebirth of life. The trees bloom and the sun comes out and life is new all over again. I take a deep breath and know it’s going to be okay. My joy and hope is in knowing that I’ll see her again one day. So, until then, I will remember her with a smile, (and most likely a tear) and live my life to the fullest, experiencing as much joy as I can along the way.

Sally Hanshew is married and has four children. She enjoys baking, camping, reading and most of all spending time with her family.

I Need You To Know That You Never Stop Grieving

My sister Kylee passed away on October 11, 2013, after a two year battle with a rare form of cancer called Sarcoma. I am reminded of my loss every day through simple things such as a photo or going to a place Kylee liked or when my son, Aiden, randomly asks about her, which he often does.

Kylee and Allan — Kylee Webster with her brother, Allan, in September 2013, a month before she earned her Angel Wings.

I have learned to accept that I am grieving but I won’t let it put me in a hole that I cannot get out of. I’ve learned to embrace the sadness when I can and to get a good cry out when I need it but I also make sure to build off of the loss I have experienced and the things Kylee went through during her journey to help others in whatever way I can.

One of my best friends lost his older and only brother to a heart attack in his early 40’s. It came out of nowhere. He passed just prior to my sister Kylee being diagnosed. When he passed, I told my friend, “I understand what you’re going through.” But then I lost my sister and realized I really had no idea. I think this is the tough part for people when they talk to someone who has gone through a loss.

If you haven’t been through it, there is no true way to understand. You can be there for the person but the reality is that you almost become a member of a special club. It’s a sad club that you don’t sign up for but instead just suddenly find yourself in. Nothing makes you feel better as much as talking to someone who has also gone through it. You have this automatic bond that just feels right. They understand you and you understand them.

What has become so important to me in grieving is that I try to help people understand that nothing truly matters except your health and your day to day happiness. Losing my sister has taught me that. I try to explain to my close friends that I have been given the gift of this bizarre “wisdom” about really understanding what is important. Kylee, through her passing, has taught me this.

And people admit all the time they don’t know what to do or say to someone who has lost a loved one, especially due to a disease or sudden, tragic event. Losing your only sibling at such a young, vibrant age was and is a tragedy. It’s really the simple things a person can say that matter. Simply, “I’m so sorry, I cannot imagine what you are going through nor do I understand but I am here for you if you need anything.” Reach out to them randomly and let them know you are thinking about them. So simple but it all helps so much.

Me personally, I like to talk about Kylee. Some people don’t like to talk because it is just too much to handle emotionally. It helps me when friends want to talk about Kylee and share funny stories because that helps her live on through me. I always like when people say, “Remember that time…” and we laugh while remembering. A good belly laugh really is the best medicine.

The biggest fear for a person grieving is that people will “forget.” I never want anyone to forget who and what Kylee was and still is. An example of happiness and strength. So never be afraid to “check in” with the grieving person. Everyone knows that holidays and birthdays are tough, but sometimes just the random day is hardest. Those are the days that I love when I get a call just to chat about whatever and know that people are thinking about me and Kylee.

The worst thing people can say is “she is in a better place.” Seeing Kylee struggle we knew her physical body could do no more but she still would have preferred to be “Here” no matter how difficult her days were. She took oral chemo up until the last day even when the doctors told her it was doing more harm than good. She wanted to be here and we wanted that too. People mean well but words like that sting. The same with “I can’t believe she is gone.” To all of us, her physical form may not be present but we know she is still here.

kylee and aiden — Kylee and her nephew, Aiden, just before diagnosis in 2011.

It is also hard for grieving people to hear others complain. I know it’s human nature and I certainly catch myself doing it, but it’s hard to hear someone say, “I just don’t want to go to work,” or “Ugh, I don’t feel like doing this or that.” It reminds me that Kylee would have done anything to stay here and she endured so many terrible things and still never complained. She always smiled and was in her “happy place” every day. I still draw so much from the strength and happiness she gave to others even when sick. I’ve learned to tune out the complaining and feel this is another gift Kylee has given me.

To honor Kylee, I try to teach people to just enjoy every day, in whatever small way you can. Life is precious, try not to let small things bog you down. I like nice things like everyone else, but I try to put the attention on helping people in Kylee’s name and relishing in little things like playing with my son. You can always make money but you cannot always make memories. Creating her foundation, Kylee’s Dancing Angels, helps me and my Mom and Dad keep Kylee here with us by assisting other with Sarcoma and I know it makes her proud. I truly believe she is here with me daily and at times she even shows me.

Last year, I was invited by Johns Hopkins Hospital to speak at their Night of Remembrance to other families who had lost someone to cancer. It was one of the toughest things I have ever done but when I finished talking about Kylee I felt so good inside. And people came up to me and said Kylee sounded like such a wonderful person, or she reminds them of their loved one, etc. It was wonderful.
I will always grieve my loss but I will continue to honor Kylee through my actions and remembering and celebrating her strong and happy spirit.

For more information on Kylee’s life and her Foundation: Kylee’s Dancing Angels website, Kylee’s Dancing Angels Facebook page, Kylee Webster’s Stories Between page

Allan Webster is an Assistant’s State Attorney for Baltimore County, MD. He writes, “Kylee Brooke Webster is my only sibling. She passed away at age 34 and was 7 years younger than me. To say Kylee and I were close is the understatement of the year. We were not only brother and sister but best friends. Our family created Kylee’s Dancing Angels in her honor to help other Sarcoma fighters get to their “happy place” just as Kylee strived to do every day during her journey with Sarcoma. I am so blessed to have a sister that was loved by so many. She was one of a kind.”