When To Say When

sleeping boy and kitten

When we went to St. Louis Children’s Hospital in October 2011 and was told, “Your child has cancer”, naturally, the plan was to fight. To do everything in the doctor’s power to get rid of Sebastian’s cancer. So, that’s what we did, and Bastian was led down a path that consisted of chemo, radiation, bone marrow transplants, pain, nausea, more chemo and more pain. He spent countless days in the hospital, missed out on school and friends and birthday parties and swimming. He lost all of his hair, and a quarter of his body weight. The treatments made him so very sick. And all the while the scans continued to show no disease improvement. The treatments were not working.

In June, the side effects of the chemo and radiation caused him to have to get a urinary catheter due to damage in his bladder. Complications from the catheter landed him in the hospital for 12 days with several infections. Right about the time he was being released from the hospital, his docs gave us the treatment options available for him. After several discussions about what the options are, Sebastian finally tells us, he doesn’t want to do this anymore. He doesn’t want to keep making himself sick. He wants to stop.

Imagine making this decision for yourself, knowing that nothing you do will take your disease away, and everything you are doing is potentially causing more pain and more problems. Would you know when to say when? At some point, the desire for quality over quantity would present itself, and that’s where Bastian is.

We’ve known for a long time that we would be faced with this decision; I just didn’t think that Bastian would be the one to bring it up. The docs told us a long time ago that there is no chance of curing Bastian’s cancer, and that everything we are doing is an attempt to give him more time. After his last stay in the hospital, Bastian said he wanted to spend the rest of his time with the people he loves, not taking things to make himself sicker, and not constantly being hooked up to IV’s. He wants quality over quantity. His decision was not accepted by a lot people in his life, particularly his peers. They don’t understand how “he can just give up”; they think he should try every single thing possible. But those of us close to him know that this isn’t him “giving up” or “choosing to die”, this is him choosing to LIVE.

This is the ultimate act of letting go. Letting him make this decision, and follow through with it, means that we aren’t doing anything to slow his cancer growth, and that he will die from his disease. But letting him make this decision, and follow through with it, means he gets to live the rest of his life on his terms. And that is much more important to us.

Deciding to stop cancer treatments is a difficult and painful decision.  Have you experienced something similar?

This post was originally published on Lacuna Loft back in 2014 and is one of our most read!

Research Study Recruiting Young Adult Survivors of Childhood Cancer

childhood cancer late effects study

Are you a young adult survivor of childhood cancer?  Have you experienced any late effects?  Then this is the research study for you!

Researchers, Kristen Trost, BSW, MSS, Ph.D. candidate (older sibling of a childhood cancer patient and social worker) Dr. Benjamin, Dr. Haney (previous childhood cancer nurse) and Dr. Hoch, of Old Dominion University in Norfolk, VA are interested in understanding why survivors of childhood cancer chose to (or not to) participate in screening for late effects, either going to a specific late effects clinic or working with a primary care physician. We would like for 250 or more childhood cancer survivors who are between the ages of 18-29, who are at least 5 years post treatment to complete a 10 minute, anonymous, online, survey about what influences their decisions.

Survivors have the option to participate in a phone call to discuss in more detail their thoughts on late effects and screening. Responses from the online survey will not be linked to the responses from the phone interview. Survivors do not have to participate in late effects screening to participate in the survey as we want to hear from everyone. From the results of the study, we hope to get a better understanding of what influences a survivors decision to go or not to go to late effects clinics or screening appointments, and use that information to better serve the survivor.

Please click the link to give them your thoughts.

Flashback #7: When to Say When

stopping cancer treatments

To celebrate our 2-year anniversary of being a nonprofit, Lacuna Loft is bringing back our top 31 articles from our archives!  The countdown to our top post is continuing today with Flashback #7: When to Say When, written by Dana. These 31 articles are the best of the best and we’re very happy to share them with you again!  The countdown continues tomorrow!

….When we went to St. Louis Children’s Hospital in October 2011 and was told, “Your child has cancer”, naturally, the plan was to fight. To do everything in the doctor’s power to get rid of Sebastian’s cancer. So, that’s what we did, and Bastian was led down a path that consisted of chemo, radiation, bone marrow transplants, pain, nausea, more chemo and more pain. He spent countless days in the hospital, missed out on school and friends and birthday parties and swimming. He lost all of his hair, and a quarter of his body weight. The treatments made him so very sick. And all the while the scans continued to show no disease improvement. The treatments were not working…..…

……

Read the rest of the article here!

Flashback #8: Letting Go Of Hope

hope and childhood cancer

To celebrate our 2-year anniversary of being a nonprofit, Lacuna Loft is bringing back our top 31 articles from our archives!  The countdown to our top post is continuing today with Flashback #8: Letting Go Of Hope, written by Dana. These 31 articles are the best of the best and we’re very happy to share them with you again!  The countdown continues next week!

….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….…

……

Read the rest of the article here!

Interview with Cancer Caregiver Tisha!

cancer mom

Today we are continuing with one of our features, personal interviews! You can read our past interviews here. Today Lacuna Loft talks with cancer mom and caregiver, Tisha. She is a cancer mom, taking care of her young child diagnosed with leukemia.

—

Lacuna Loft: When was your child diagnosed and what was the diagnosis?

Tisha: My youngest child, Jace, was diagnosed with Acute Lymphoblastic Leukemia in January of 2013. He was 2 years old.

LL: How did you feel when your child was first diagnosed?

T: Physically, I didn’t feel much. I was going on pure adrenaline for the first 6-9 months. I knew I had to be my best in order to care for him so I did what I could do keep myself healthy.
Mentally and Emotionally it was draining. Between dealing with outside supporters, two full time jobs, our girls, family members, and my own emotions, it was a lot and definitely took its toll on my mind and heart.

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

T: On the way to the Dallas Children’s Hospital, I put in motion a team of people to take care of many things: meals, house, pets, caring bridge, and other social media communications, and a team of close friends and teachers to help with the girls. That specific team all met at the hospital that morning and brought the girls to us. We had them circle up around them as we told them. Each person was from a different part of our lives (church, schools, friends, parents) and we knew they would be able to support our girls (then 12 and 8) whenever we could not.

LL: Any words of wisdom to other young adult caregiver moms and dads out there?

T: Wherever you are, whatever you feel, let yourself be there. Don’t let others who have not walked in your shoes tell you how you should be feeling or where you should be on your journey. There’s not one emotion you could describe that would surprise me as I’ve felt them all. Sometimes you have to even be cautious of the voices you hear in the childhood cancer community, too. Surround yourself with what I call “the circle of trust” (those that you completely trust and those who allow you to be where you are). I kept my circle small and told them the REAL stuff, but for the majority of people I came up with a blank phrase that updated them on Jace but didn’t reveal too much.

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

T: My husband and I depended a lot on our church family. We call them family of choice as they are not true family members but we do life with them daily and they are the ones that pray for us and care for us just as family would. Had it not been for us learning the big lesson of asking for help, we would not have survived. Our marriage would not have survived if we did not have them pouring positivity into our days and nights.

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

T: We were pretty lucky. We were both surrounded by a great church family, supportive co-workers, and some incredible doctors and nurses. Thankfully, we learned early on to reach out in when we felt we were drowning. It was a lesson we’ve learned over and over. As people, we were never intended on walking this journey alone. Thankfully, we are now part of the Children’s Hospital Family Council where we give input and help doctors and nurses make the process smoother for families and patients like Jace.

LL: What kinds of things did you do to distract yourself and your child during treatments (either
at home or at the hospital… Or both)?

T: We did A LOT. Movies, made up games, video games, paper airplanes, crafts, singing and dancing, reading, and board games. Being in isolation is a very difficult thing and in fact, isolates you not only physically away from the germs but isolates you emotionally from people in general. That is a hard thing to get used to when everyone you know is out having fun. One of Jace’s favorite things was building a blanket fort and just resting with his iPad. It made him feel like he was in a different place most times.

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

T: Sharing our story has empowered me and I think it has done the same for our family. I know many times other cancer parents shy away from being so vocal and outgoing about their journey, but because I’m a people person and a writer by nature, blogging about our experiences and being able to give those on the outside a glimpse of what life was like inside the arena really did educate many of our supporters. It made them understand some of the specifics on his treatment and helped them know how to help in real ways.

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

T: Jace has been off treatment since May of 2016! He still visits his Dr monthly for checkups and blood draws so they can ensure he is continuing to heal. He is having a great time in 1st grade and will be in the Children’s Hospital of Dallas’ Christmas Parade this weekend!

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

T: I love to read, write, play the piano, cheer on our favorite football teams and spend time doing anything with family.

LL: What “words of wisdom” and/or advice would you give any young adult caregivers?

T: Take care of you. It’s easy to forget about yourself while trying to help your child survive and watching them go through some horrific days of treatment. Have someone close to you keep you accountable, someone that is going to come in the area and help you up when you fall. If we do not take care of us, we will never be able to fully take care of those we love the most.

Photos by Dani Welch Photography.

Thank you for sharing your story with us, Tisha!

Are you a young adult cancer survivor or caregiver?  Interested in being interviewed by Lacuna Loft?  Let us know!  We’d love to hear from you!

Advice From Cancer Moms

advice from cancer moms

Caregiving for a child with cancer is loaded with challenges.  It can be easy to feel alone and frustrated as you manage your child’s treatment and recovery schedule while keeping them in school and part of a “normal” life.  School, in particular, can present a difficult environment for the childhood cancer survivor.

Recently, Cancer Knowledge Network featured the voices of several Cancer Moms as they journeyed with the cancer survivor kids.  The parents quickly discovered all they had in common while helping support one another.

Check out the great article, here!

The Thing About Cancer + Kids Is…

young adult cancer and kids

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During the month of May, we’ll be bringing back some of your favorite posts in groups of 5!

Today, we’ve got 5 GREAT posts focused on getting to the nitty gritty of young adult cancer and kids.

[/spb_text_block] [spb_single_image image=”14097″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/tell-kids-cancer/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”first”][/spb_single_image] [spb_single_image image=”14094″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/three-lessons-learned-cancer-mom/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”last”][/spb_single_image] [spb_single_image image=”14095″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/book-review-a-monster-calls/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”first”][/spb_single_image] [spb_single_image image=”14099″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/waiting/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”last”][/spb_single_image] [spb_single_image image=”14096″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/doorways-to-arkomo-review/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”first last”][/spb_single_image]

The Thing About Cancer + Tough Decisions Is…

young adult cancer and tough decisions

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During the month of May, we’ll be bringing back some of your favorite posts in groups of 5!

Today, we’ve got 5 GREAT posts focused on getting to the nitty gritty of young adult cancer and tough decisions that come with it.

[/spb_text_block] [spb_single_image image=”14029″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/stopping-cancer-treatments/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”first”][/spb_single_image] [spb_single_image image=”14027″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/letting-go-of-hope/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”last”][/spb_single_image] [spb_single_image image=”14030″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/death-with-dignity/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”first”][/spb_single_image] [spb_single_image image=”14034″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/harsh-realities/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”last”][/spb_single_image] [spb_single_image image=”14035″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/young-adult-cancer-slow-down/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”first last”][/spb_single_image]

Preserving Fertility In Children During Cancer Treatments – Live Q&A

Preserving Fertility During Cancer Treatments

Cincinnati Children’s Hospital Medical Center is putting on a live, online question and answer session for families interested in fertility preservation in children that have been diagnosed with cancer and blood diseases.

The event will take place on April 20th from 7-8 pm EDT and is free. During this event, parents will be able to chat with Cincinnati Children’s doctors who specialize in pediatric fertility preservation.

Check out this link below for more information.

 

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.