How To Tell Your Kids About Cancer

How To Tell Your Kids About Cancer

This post is brought to us by Jennifer!  If you missed her interview with Lacuna Loft, you can find it here!  You can find all of her posts here.

I think the worst day of my life was the day my husband and I chose to tell our young boys about my cancer diagnosis. We both knew we had to tell them sooner rather than later. Things move fast in a household turned upside down when cancer barges in. I had already been home from work for a few days, recovering from a biopsy and then meeting my surgeon for the pathology reports and going for the seemingly endless tests that follow.

As is typical in my house – I don’t overthink anything. I go with my gut and jump in with both feet. I didn’t know the right way to say or do what I was about to do but I did know
three things were paramount in that moment:

*I didn’t want to scare my children.
*I wanted to be honest.
*I needed to make sure they got their information from my husband and myself before overhearing a conversation that may confuse or frighten them.

We sat them down and explained my diagnosis in age appropriate terms. At the time they were 9 and 11 years old.

“Mommy found something hard in her breast and when something happens to your body that doesn’t seem right you go to see the doctor and get it checked out. Most of the time it is nothing serious but this time it is. Mommy has cancer. I’m going to have an operation and then I will have to take medicine that may make me feel tired and sick. I may lose my hair. But I’ll still be your mom. I’ll still be able to help you with your homework as long as it’s not math. We’ll still be able to do the things we like to do. Go out for pizza. See a movie. Go to the beach. I just might look a little different and get tired a little quicker.”

My husband asked if they had any questions. We assured them that they could ask us anything and we promised to give them an answer. If we didn’t know the answer, we’d find out the answer. We’d ask the doctors.

My oldest son asked if my hair was going to grow back. That was an easy answer, “yes!”

My youngest asked if I was going to die. Ummmm. Shit! If one of them was going to ask that question I knew it was going to be him. My response? “I don’t plan on it. I’m going to do everything the doctors tell me to do.”

What else was I going to say?

I hate the answer, “Well, we are all going to die someday.” And I certainly couldn’t say “no” because that would be a lie. I didn’t know how this was going to work out. I had no idea if I was going to respond well to treatment. I had no idea if my cancer had spread.

They sat there quietly. There wasn’t much to say. If they cried it wasn’t in front of me and anyway I was crying enough for all of us so there’s that. It took me a long time to become that stoic unflappable cancer chick you see now.

Treatment ended and we moved forward together as a family. My boys have grown into wonderfully compassionate, kind young men that make my heart burst with awe and pride. When I got sick again they were teenagers. I didn’t tell them this time, my husband did.

He picked them up from school and he said the words I couldn’t imagine dumping on them again. By the time I got home from work they were there, eager to hold and hug me. Telling me I kicked its ass once and I’ll kick its ass again.  Then one of them cracked a fart joke. The other laughed and within 5 minutes they had a disagreement about a video game which lead to a wrestling match in the family room.

At that moment I knew we were going to be okay. They have coping tools. They’ve learned to compartmentalize just like their mom. They understand it’s not all about the cancer. I’ve always refused to give the disease that much respect. I’ll accommodate and treat when necessary but I’m so much more than my rogue cells. I’m a mom. I’m a wife. I’m a badass survivor.

Interview With Cancer Survivor Paula!

cancer survivor interview

Today we are continuing with one of our features, personal interviews!  You can read our past interviews here.  Today Lacuna Loft talks with a cancer survivor, Paula.  She discusses her illness, her emotional and physical health and well being, and so much more!

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Lacuna Loft: When were you diagnosed and what is your diagnosis?

Paula: May 21 2015, I was 36.  I had noticed a dent in my left breast back in January.  I thought I was working out to hard but when it didn’t go away I decided to get it checked.  They found two tumor’s during the original ultrasound, Stage 3 Grade 3 Invasive Inductile carcinoma.  After my mastectomy they discovered 5 tumors and fully involved lymph nodes.  I was a large DD so the ultrasound didn’t see the other tumors.

LL: How did you feel when you were first diagnosed?

P:  I was scared.  There are days I still pray it’s a bad dream and I will eventually wake up.  But I was prepared, I knew something was up right from the ultrasound, plus my Mum has been through it.  My biggest fears in the beginning were losing my hair and the surgeries.  I was angry at myself for not getting it checked sooner.  I had put my job before my health.  I figured it was nothing.  I was too young, even my doctor was shocked.

LL: How did you choose to share your diagnosis with your children?

P: We just told them straight.  They knew something was up.  I was worried about telling my kids, cause ultimately it increased their chances for the future of being diagnosed as well.  My son didn’t understand.  He thought I was like Terry Fox.  He was worried I was going to die.

LL: Any words of wisdom to other young adult cancer survivor moms out there?

P: Never stop asking questions, about your options, benefits.  Never stop living.  I kept going to the gym and the arena.  I wasn’t missing anything unless my doctors told me I needed to stay home, like post-op and such.

LL: Who/what/where did you turn to?

P: I turned to my family and social media.  I had no benefits.  I lost my job.  We have very few close friends.  I found fellow survivors through a local Moms group.  It surprised me the people I thought would be there for me weren’t and complete strangers bent over backward to help me.

LL: What (if any) additional outlets could you have used/turned to that you do not feel you had at the time?

P: There needs to be better benefits for Cancer patients who do not have employer benefits.  Without the fundraising we would be in a bad place right now, and stress on top of it all doesn’t help the healing process.

LL: What kinds of things did you do to distract yourself when you were going through treatments (either at home or at the hospital… Or both)?

P: I go the gym.  I go to Cancer yoga.  I watch movies on my tablet.

LL: Could you describe how sharing your story has affected your journey with Cancer?

P: Outsiders know very little about the process.  Some don’t know how to treat you, some treat you like you have a common cold, and a few doubt you, if you don’t look sick then you must not be.  Many people were inspired by my strength.  I never let Cancer stop me from living.

LL: Where are you now in your journey with Cancer?

P: I have had a mastectomy with immediate reconstruction. I have finished Chemo (thank god).  I  just had my lymph nodes and ovaries removed right before Christmas, so now I heal for another few weeks, and then I have 35 radiation treatments to go.  Once that is complete we will make the right side match, and then hopefully be done. Now I am just praying for my hair to grow back.

LL: What do you like to do in your spare time?

P: I love to go to the gym and I spend 6-8 hour each week at the arena watching my kids play hockey and ringette.

LL: What “words of wisdom” and/or advice would you give any young adult facing Cancer or another life-threatening illness?

P: You are stronger than you think.  Make sure you keep living, take help when offered, and ask for help when you need it.

The financial strain on a family is almost as bad as the illness itself.  It’s so hard to focus on your health when you’re worried about bills, food, etc.  I had to wait 5 months for disability from the government. It’s 1/3 of what I was making and we have 4 kids.  My husband had to use all of his vacation to be at the important appointments and take me to my surgeries. Everything he took off after July was unpaid. But he is my rock and I needed him with me.

This is my Youcaring link. We are still so far from our goal. I will likely be off work until late 2016 early 2017 so every little bit helps.

Please never put your job before your health.  It’s not worth it and it could cost you your life.

Thank you for sharing your story with us, Paula!  Paula would like you all to know that she is more than happy to answer any questions that you all might have about chemo, surgeries, reconstruction, etc.!

Are you a cancer survivor, caregiver, or do you have a long term illness?  Interested in being interviewed by Lacuna Loft?  Let us know!  We’d love to hear from you!

Feeling Beautiful

I have a much different definition of beauty now, after surviving breast cancer, chemotherapy, and a failed breast reconstruction attempt, than I did before my breast cancer diagnosis.

Before my diagnosis, I loved my long hair, and so did my oldest son, Ethan. Ironically, I had been growing my hair out to donate it to cancer patients so it was getting rather long. I’m happy to say that I was still able to donate my hair. But I was worried about how Ethan would deal with the loss of my hair, so prior to my first chemo appointment, I talked to a child psychologist. I mean, how do you explain cancer and chemo to a five year old? The child psychologist advised me to be honest with Ethan and explain to him that I am sick but I will be ok but the medicine I have to take will make my hair fall out. And she suggested that we make a party out of shaving my head. We invited friends and family over and my mom began cutting my hair. Poor Ethan! He cried and yelled, “Mommy’s not beautiful anymore!” My mom kept assuring him that I was still beautiful and always would be. My husband, Brian, also shaved his head and we asked Ethan if he wanted to shave his too, but he declined. He said his hair was too pretty to cut off! He does have nice hair, but I learned quickly that it is not the hair that makes a person beautiful.

One of the worse parts of chemo for me was the bone pain. My bones hurt so bad that I couldn’t sleep at night. To find some relief, I would soak in the bath tub. Brian would sit into the bathroom with me, in the soft glow of a night light. It would have been so romantic if I wasn’t bald, boobless, and bloated. I certainly didn’t feel beautiful, but to Brian, I was his beautiful wife.
Jamie and brian

When a woman has a bilateral mastectomy like I did, the next step is often reconstruction. For me, surviving breast cancer wasn’t as difficult as surviving a failed reconstruction attempt. Infection set in and I started having blood pressure issues. I was transported to a bigger hospital in Chicago in the middle of the night and things were touch and go for a while. My doctors told me I could try a reconstruction again after six months, but after all I had gone through, I decided reconstruction wasn’t for me. And Brian didn’t want me to have it done either. I decided I need to embrace the chest I have. Scars can be beautiful. I asked a friend who is a body artist to paint on my chest and I posed for topless pictures featuring my scars and her art. I nervously took a chance and posted these pictures on social media during October, breast cancer awareness month. The feedback was overwhelming. I was surprised at the number of people who praised my courage and called my photograph beautiful.

body paint

After my breast cancer diagnosis, I spent a lot of time reading and researching about all the chemicals that are in commonly used items, such as cleaning supplies, personal hygiene items, and food. Scary stuff! We are unaware of what is in the products we buy and we are unaware of safer alternatives. So I threw away EVERYTHING in my house that contained chemicals, and immediately stopped using deodorant and other skin products. While I was detoxifying my body, I didn’t know what alternatives there were to commercial health and beauty products. One day, my mom took me aside and told me that I stunk, literally! And on top of that, my face was an oily, acne mess. Was it possible, I thought, to be beautiful and chemical-free? I turned my research efforts to finding healthy, chemical-free alternatives that were as effective as the commercially made ones. I then began making my own chemical-free, aluminum-free, paraben-free deodorant and tweaking the recipe until I settled on a product that worked. This was really the start of what would become my business, Spero-Hope, LLC.

jartops

Please remember that this post is the opinion of the author and should not be replaced for actual medical advice or attention.  Please learn more before making lifestyle changes yourself.  Lacuna Loft supports healthy living, whether chemical-filled or chemical-free!  Find what works best for you!

Welcome Jamie!

Lacuna Loft is excited to continue introducing some guest bloggers! These great folks represent a variety of perspectives on the myriad of topics covered here at Lacuna Loft. Before everyone starts really getting into the nitty-gritty of all they have to say, we wanted to introduce them a bit. Without further ado, here is Jamie!

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Shortly before Christmas, 2012, Jamie Kastelic was diagnosed with breast cancer and had a double mastectomy as soon as the holidays were over. At the time, she was only 33, the wife of a state police officer, and mother to two young boys, ages 2 and 5. Over the next year, Jamie balanced chemo treatments with raising kids and endured a failed breast reconstruction that became life-threatening. She is now happily cancer free and committed to living a chemical free lifestyle. To this end, Jamie began making her own chemical-free, paraben-free, aluminum-free deodorants, body butters, shaving cream and other personal care items. Thanks to the support of her family, Jamie is now an entrepreneur!  She launched Spero-Hope, LLC in the summer of 2015 and now sells her all-natural personal care products across the country via her website, and in retail locations throughout the Midwest. What Jamie learned from her cancer survival experience is that opportunities sometimes come on the heels of tragedy.

8 Years Of No Good Cancer

no good cancer

It’s been eight years since I put on the necklace, eight years since I felt the lump under my skin. And it’s been almost eight years since I first heard those words: “Michele, it looks like you have thyroid cancer.”

It was a Friday afternoon in late November, two months after my wedding and the day before my husband and I were planning to go pick out our Christmas tree. My doctor said those words, and then she made two calls, and just like that, I had appointments with a surgeon to remove my thyroid the day after New Year’s and an endocrinologist to manage my care forevermore after the surgery.

My husband and I drove home in mostly stunned silence, but for my confused questioning: “I thought I was doing everything right. I run. I don’t smoke. I eat blueberries, for god’s sake.” I knew all too well even before that day that cancer doesn’t discriminate, but I still never expected that it would happen to me.

My thyroidectomy was a little more than a month later, but on November 30, 2007, I became a cancer survivor. I felt physically just the same as I had the day before — which is to say, completely fine — but my life had been separated into two distinct periods, one before cancer and one after.

A couple of weeks later, I went to my first thyroid cancer support group meeting. I knew by then that thyroid cancer was then, and is now, one of the fastest growing cancers, particularly among women in their 30s and 40s. More than 60,000 people will be diagnosed with the disease in 2015; most of them will have papillary thyroid cancer, the same type that I did. Most of us won’t die of thyroid cancer, but it will be with us, in some form or fashion — via daily drugs to compensate for our missing thyroids, quarterly and yearly lab tests, the worry when we find an unusual lump — for the rest of our lives.

But there was a lot more that I didn’t know that day. I didn’t know that the radioactive iodine treatment I’d receive to destroy the thyroid tissue that my surgery left behind would damage my salivary glands and leave me with permanent dry mouth. I didn’t know that that treatment wouldn’t kill all the cells, and that just two years later, another cancerous nodule would grow in the same spot that the first one did, requiring another round of treatment. I didn’t know how to help my family and friends manage my diagnosis and treatment and all its aftermath.

I didn’t know that too many people — some doctors included — continue to think, and to tell thyroid cancer patients, that thyroid cancer is “the good cancer.”

There is NO good cancer.

I haven’t defined myself by cancer in the last seven years, but that diagnosis changed my life. Some of those changes have been tough ones; I’ll never take even a routine bloodwork appointment lightly again. Other changes have been for the better. The word “cancer,” even when it’s preceded by “fully treatable,” has a way of hammering home the message that life is short.

I kept up my blueberry-eating habit, but I also traded in a stressful job for one that’s closer to my true loves of writing and editing, with more time for the people and priorities that matter most to me. That change altered my career trajectory — for the good, I’d argue now, especially as I look at my two kids, both born since my recurrence. I’m not sure I would have made it without the nudge — no, the kick in the butt — that thyroid cancer gave me.

It’s been five years now since my last round of treatment, and I’ve pivoted to figuring out life after cancer, though “after” implies a greater level of completion than I feel. I still have a lot to learn about thyroid cancer and what it means for me and my family — lessons I hope I’ll have a lifetime to learn. In the meantime, I’m proud and grateful to call myself a survivor.

Find out more about thyroid cancer, including how to conduct your own neck check, as well as information for patients and caregivers, at the Thyroid Cancer Survivors Association.

Michele is a wife, mom of two, cancer survivor, and writer living in Washington, D.C. She blogs about life after cancer and infertility — as well as random musings on life as a transplanted Bostonian, a devoted fan of the Red Sox, and an infrequent and slow runner — at A Storybook Life. You can follow her on Facebook and Twitter.

Have you heard the phrase, “you have ‘the good cancer'” too?

Welcome Michele!

Lacuna Loft is excited to continue introducing some guest bloggers! These great folks represent a variety of perspectives on the myriad of topics covered here at Lacuna Loft. Before everyone starts really getting into the nitty-gritty of all they have to say, we wanted to introduce them a bit. Without further ado, here is Michele!

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One day I was a 29-year-old newlywed, just back from my honeymoon. The next I was still that 29-year-old newlywed — with a lump in my neck that I’d found while putting on a necklace. Two months later, I got the diagnosis: papillary thyroid cancer.

I had my thyroid removed and radioactive iodine treatment. Two years later, the cancer came back. I’d been a professional writer for years, but this prompted me to I start writing for myself. At first, I wrote my blog, A Storybook Life, to update my family about my treatment. And then I realized that my writing was part of my treatment; it gave me an outlet and a connection to other people facing some of the same issues.

I passed the five-year anniversary of my last treatment in July 2015, and now I’m the mom to two kids, too. But my cancer story isn’t over; I hope to have decades of survivorship ahead of me. So, I’m still writing — and reading. I’m glad to be part of the Lacuna Loft community.

Book Review: A Monster Calls

A Monster Calls

I just finished reading (for a second time) the most beautiful book, A Monster Calls by Patrick Ness.  If you have a child in your family that is dealing with a parent’s cancer, this is the book for you.  Hell, I’m 29, lost my mother to cancer 4 years ago, and this was the book for me!

In the book, a young boy, Conor, is wrestling with something that brings a nightmare each night.  The fear grips at his chest and he sometimes wakes screaming out.  His mother has cancer and her illness is affecting more and more of daily life around him.  Add in nightly visits from a harrowing monster, and you have a heart wrenchingly beautiful story of grief, destruction, and healing.

I highly suggest this book.  While my own fear did not manifest itself as a nightmare or as a monster come walking, Conor describes exactly how I felt about the last pieces of my mother’s illness.  I finished this book with tears streaming down my face, feeling drained and also relieved that someone had put into words the feelings that still sometimes wake me in the middle of the night.

Without giving more details, and I realize that some of this has been a bit vague, you must go and read this book!

Welcome Cheryl!

Lacuna Loft is excited to continue introducing some guest bloggers! These great folks represent a variety of perspectives on the myriad of topics covered here at Lacuna Loft. Before everyone starts really getting into the nitty-gritty of all they have to say, we wanted to introduce them a bit. Without further ado, here is Cheryl!

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I was diagnosed with thyroid cancer in 2014 at the age of 33.  When cancer enters your life, you have no choice but to let it in…and then declare war and find a way to rid yourself of that uninvited and unwelcome house guest!

I’m not only a cancer survivor, I’m so much more than that.  I’m a wife, a mother, a daughter, a sister, a friend, a full-time employee, etc.  My Mom and my husband have been my primary caregivers.  Add in my 4 children (ages 11, 7, 5, and 2) and a couple of best friends and you have the basis of my support system.

My family is my life. I love finding new activities for us to do, new places to explore, and new adventures for us to experience.  In my down time I love to read and do yoga.  I’m also a member of an amazing local resource that provides support to people who are living with cancer.  I’m a work in progress and I’m happy for a chance to be able to give back and help others like me.  There is joy to be found in sharing your experiences and making connections with other people who have encountered the “C” word and are striving to survive and find out how to live life after cancer.

Mommy, Where Are Your Nipples?

“Mommy, where are your nipples?”

These words I never thought I would hear coming out of my kid’s mouth. This is my reality; and I promised myself when my journey began over six years ago, that I would always be honest with them. I respond with, “The doctors removed them along with my boobies and fixed them so that I would never get sick with breast cancer.”

To those who don’t know about hereditary breast and/or ovarian cancer it makes no sense. People aren’t able to understand that by removing healthy breasts and ovaries, I have reduced my chances of developing cancer to less than 2-5%. If I had a dollar for every person that told me that I could eat right or exercise to avoid my risk of cancer, well, I would have a lot of money! As a BRCA2 mutation carrier, I was given up to an 87% risk of breast cancer and up to 40% risk of ovarian cancer. That knowledge alone was enough for me to take drastic actions. Cancer was NOT going to get me.  These are the realities of a previvor.

A mutated BRCA gene cannot be repaired. It cannot be fixed by eating right, exercising, or with natural remedies. If you have a mutated BRCA gene it’s because you were born with it. It has been ingrained in your DNA from the time of conception. If either of your parents has the BRCA mutation then there is a 50% chance of passing it onto their children. And yes, males can be carriers as well.

September 2008, when my dad called to tell me that he was waiting for his results from a genetic test, I had no idea what he was talking about. He explained that it was a blood test to see if he carries a mutated BRCA gene which could be passed down to me and put me at an extremely high risk for certain cancers. We didn’t have any breast cancer in our family that I was aware of, and, although sadly, one of my cousins was fighting ovarian cancer, I didn’t see how it was connected. While I knew he lost his mother to cancer while he was in his teens, I never knew the details.

On December 27th 2008, at my own genetic testing appointment I received my positive BRCA mutation results. Soon after my genetic counselling appointment, I learned from my father that he was able trace our family tree as well as health records from my cousin (who was fighting ovarian cancer at the time). I discovered that there was not only ovarian cancer in my paternal family tree, but breast cancer and skin cancer too (which we BRCA2 mutants have a slightly higher risk for).

karenandjoel

My amazing husband and best friend Joel

Walking out of my genetic counselling appointment, hand in hand with my amazingly supportive husband, my decision was made. I was going to have a risk-reducing double mastectomy and hysterectomy with oophorectomy (removal of the ovaries), ASAP!

Armed with my results, I got online to search for others who were in a similar situation. I was shocked to find almost no information or support about BRCA mutations. I needed to talk to others who knew what I was going through. I needed to connect with others who were living with a BRCA mutation. I needed to bond with others who understood how I was feeling.

Panic set in and breast and ovarian cancer took over every waking thought. Every ache and pain I felt I thought was cancer. My breasts and ovaries felt like ticking time bombs, like they were plotting against me. I had to get rid of them. Right away! I felt that it was not a matter of if I was going to get cancer but when. All I could think was, I’m going to get cancer and die young. I’d leave my husband a widower and my children without a mother. I was NOT going to let that happen!

On February 10th 2009, I had a full risk-reducing hysterectomy with oophorectomy. Once I recovered, I went back into the hospital on April 30th, 2009 to undergo a risk-reducing double mastectomy with the beginning of reconstruction (or, PBM; Prophylactic Bilateral Mastectomy as those of us in the BRCA community refer to it). From the moment I woke up from both surgeries, my fear was gone. I never once questioned my decisions. I was so proud of myself! I was elated! I had taken control of my life and dealt cancer a pre-emptive strike!

Going through with my surgeries and reconstruction was not easy and I was still looking for support which I wasn’t finding. Thankfully I found one girl who I connected with online, Teri Smieja, who also had a BRCA mutation and was going through the same preventative surgeries as me. It was such a relief to talk with someone who just got it. I felt like I wasn’t alone. It made all the difference during my journey and we have since become amazing friends.

karenandteri

Teri Smieja and I – Founders of BRCA Sisterhood

We decided that we would start a private Facebook group for women like us who needed support. In December 2009 we started the BRCA Sisterhood. It started with eleven women and has since grown into the largest, most active Facebook group of its kind with almost 5000 women worldwide and growing daily. It is a group that is filled with support and understanding. There is no judgment only love. Whether someone is choosing surveillance, chemo-prevention or risk-reducing surgeries, there is someone in the group going through the same thing.

Through the love, support and appreciation of all the women I have met, grew a passion for advocacy. I realized that I could make a difference. I felt something deep inside of me take over. The BRCA Sisterhood wasn’t enough, I needed to do more.

9 months ago I started a Montreal BRCA support group. The group meets once a month and allows everyone to have a face to face connection. It has been quite successful and I have received great feedback from the women who have attended.

I still feel that I still have so much to offer and share, which brings me to this, my next project, my blog. When Lacuna Loft approached me about writing a blog for them I was touched and humbled and happily agreed! Being able to affiliate myself with such a fabulous online cancer magazine will be a tremendous help in reaching a wider audience.

Whether you are dealing with hereditary breast and/or ovarian cancer or know someone who, is I encourage you to make sure that they ask questions, educate themselves and reach out and ask for help. No one dealing with something as serious as Cancer should ever feel alone. I have and will always be an open book about my risk reducing surgeries so if you have any questions at all please don’t hesitate to ask.

Much love and health,

Karen

xox

“We make a living by what we get, but we make a life by what we give.”
Winston Churchill.

Are you a previvor?  Have any love or tips to share?

Letting Go Of Hope

letting go of hope

From the moment I was told, “Your son has cancer”, I had hope. I was filled with it. It was the feeling I had when looking over treatment plans. It was what I thought I heard in the doctor’s voices when they were telling me what we were going to do next. It was the word I heard the most often from people.

“We are hoping for the best.”

“We hope that the chemo works.”

“We are holding out hope for a miracle.”

“Don’t lose hope!”

It was the name given to the Facebook support page. “Hope for Sebastian”. It was on the t-shirts we had made. Hope was everywhere.

When you are a parent, you have nothing but hopes and dreams for your children. From the moment my children were born, I had all these great ideas about who they would become, and what kind of lives they might have. I pictured them riding bikes, losing teeth, going on dates, graduating high school, getting married, starting families. I had hope that they would each have the best lives imaginable.

But then cancer showed up. And my hopes for my son changed. It went from hoping for him to get into a great college to hoping that this round of chemo doesn’t make him as sick as the last one. Hoping that he might get to go back to school for a little while. Hoping that he won’t have to be in the hospital for his birthday again. Hoping that the test results show improvement. Hoping that the treatments are working. Hoping that the cancer will go away. Hoping that he won’t die.

I continued to hold on to that hope. Even when the tests showed that the drugs weren’t working. Or when we changed drug trials. Or when we switched hospitals. Especially when we switched hospitals, because the newest hospital had a team… one that specialized in Sebastian’s cancer. New found hope! Surely they would find a way to fix this.

A year later, after countless clinic visits and chemo rounds and tests and scans, the doctors told us that we really had no hope of curing Sebastian’s cancer. They told us that everything we could do would just give him a chance at a little more time. The doctors actually said “no hope”. No hope? I’m his mom… I can’t give up hope. This is my son, my child, someone that has all these plans and dreams waiting for him. How can I stop hoping he will get better? I can’t give up hope. I just can’t…

Last spring, the side effects from all that hope-chasing caught up to us. Sebastian ended up in the hospital for 12 days with multiple infections, and we were all afraid he wouldn’t be able to get through them. A DNR was put into his file. His grandparents dropped everything and came to town to stay with us. We had conversations with his pastor about funeral plans. Reality slapped us all in the face. But, our hope prevailed, and the antibiotics cleared the infections up, and we started talking about what we were going to do next. But Sebastian had other plans.

Towards the end of that hospital stay, Sebastian decided that he was tired of doing this. He was tired of the hospital stays, he didn’t want to keep making himself sick from chemo, he was tired of missing out on his life. He asked me if I would be mad at him if he decided that he didn’t want to fight his cancer anymore. He was letting go of his hope for a cure, and just wanted to live his life out, his way.

So, last July, we stopped his treatment, and started him on hospice care. No more chemo, no more weekly clinic visits in Chicago, just pain management and hospice nurse visits at home. I keep in touch with his oncologist via text on a weekly basis, just keeping an eye on how things are progressing. And for a while, nothing was happening.

Last month, we decided to do a set of scans because his pain was getting worse, and spreading to new areas. The scans confirmed our fears, his cancer was spreading. I looked at the scan results, and my fears were confirmed and that hope I had been holding onto for so long was crushed. He is getting worse. His cancer is not going to go away. Sooner than later, my son is going to die because of this. I cried, I shared the news with friends and family members, I told my other children what we had found out. I looked at what we had and I accepted it.

I let go of the hope that he would get better. That fight I had been fighting from day one, thinking he was going to be the one that beat the odds, even though the odds were completely stacked against him from the beginning. I accepted reality and let go of the dream. I just let it go.

I slept for 13 straight hours that night.

Holding on to hope for something that isn’t possible is a lot of work. I didn’t realize how much work it was until I stopped doing it. People have a misconception that having acceptance about something means that you have to like whatever it is. That is not always the case. Accepting something means only that. You accept it, and let it be what it is, and you stop trying to will it to be what it isn’t.

I’m not saying that I don’t have any hope anymore. I still have an overabundance of hope, but today it’s for different things. I hope for comfort for him, that he can handle his pain. I hope for strength for all of us to get through what is coming, together. I hope to draw closer to my family while we face the things ahead. I hope that Sebastian continues to find things to make him happy. I hope for him to have peace. I hope for just a little more time.