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!

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.

When to Say When

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.

Stopping cancer treatments is a difficult and painful decision.  Have you experienced something similar?

Decisions And Hope

What’s for dinner?

It’s one of my least favorite questions. I have to think about what we’ve had recently, what everyone likes/dislikes, and make a decision. Every single day. It never fails. At some point today, I will get a call, or a text that says, “What’s for dinner?”

I’m not a big fan of making decisions, mostly because change inevitably follows whatever decision is made. Good change, bad change, scary change, unknown change… it’s something I’m not very comfortable with. Even if things aren’t good, if they stay the same, at least I know what to expect.

Since Bastian’s diagnosis, I have had to make a lot of really tough decisions. Decisions about which chemo drugs to give him, weighing out pros and cons of the side effects vs the “hope” of disease improvement. Decisions about whether or not to continue on with a drug trial, despite how sick it’s making him, because we’ve slowed the cancer growth. Decisions about not letting him go away to his youth group retreat last year, for fear of him being that far away while he wasn’t feeling very good. Most recently, it was the decision to take him off of the chemo he’s been taking for the past year, because he’s having some bleeding and kidney issues. I had to decide on whether to continue to poison him, with horrible side effects that could cause permanent damage, or stop the meds and not be doing anything to stop the spread of his cancer.

That’s a far cry from, “What’s for dinner?”

We’ve known for a long time that the treatments we are doing now are to maximize his quality of life. Our goal for the past year and a half has been to keep things at bay for as long as possible, on drug studies that have the least amount of side effects. As of right now, there isn’t another study for him to start. Even bigger decisions are coming up very soon, and I am not looking forward to being the one to make them.

What about hope?

People ask me if I’ve just given up, if I’ve lost all hope.  That’s a tough question to answer, mostly because my beliefs are different than most other people. When most people speak of hope, they make reference to God, and miracles. Of course I hope that we find that “miracle”, that the docs will look at the scans and say, “It’s gone!”, but I have to remain grounded in reality so that I have the ability to face the things that are already here. The hope I have is that my son will know love, that he will know peace, for as long as possible. My hope is that he knows how special and awesome and important he is. My hope is that we will all make it through this, no matter what the outcome, and gain strength together. My hope is that we will all become better people having been on this journey.

I have hope. I see it in Bastian’s face every time he smiles. Despite everything going on, he remains positive and upbeat. That’s hope.

Waiting

With a cancer diagnosis, you get bombarded with a ton of information. Disease info, hospital info, oncologist info, treatment plan info, clinical study info, drug side effect info, etc. One of the things they don’t really spell out in all that info is how at least half of the treatment plan is waiting. Waiting for your appointment, waiting for the doc to come in, waiting for blood counts to see if chemo can start, waiting for the chemo to arrive, waiting for your blood to be typed, waiting for the blood transfusion to arrive, waiting for test results, waiting to see if the drugs are working… waiting for answers.

In the midst of all that waiting leaves a lot of time. Finding things to do with that time is very important for me, because if I’m not staying occupied, my mind can wander to some fearful places. I’ve learned over the past 2 years to never expect to just be “in and out” when it comes to a clinic visit or a chemo appointment. Something always seems to come up that has us waiting, so we show up prepared. Bastian brings his iPad, or his Kindle, or a movie to watch. I bring my laptop and catch up on work, or read on my Kindle. I keep a suitcase packed in my trunk with clothes for the both of us, just in case a short clinic trip ends up becoming an overnight stay in the hospital for one reason or another.

Because I know I’m going to be waiting a lot, there are things that I always make sure we have when heading to the hospital. Besides clothes, below is my personal checklist:

  • Phones, Kindles, Ipad, Laptop
  • Chargers for all of the above
  • Cash/change for the vending machines or cafeteria
  • Paper and pen/pencil
  • Dry erase markers – to decorate Bastian’s windows should the need arise
  • Chewing gum/candy
  • Bastian’s next 2 med doses (even if I’m sure we’ll be home in time)

With Bastian being a juvenile patient, most hospitals have some kind of Child Life program with volunteers who come by to see if he needs anything, or wants to participate in arts and crafts, music, or various other activities. However, a lot of the time, he feels crummy and just doesn’t want to be bothered with anyone else, especially when the docs and nurses are in and out all the time. So, we come prepared to entertain ourselves the best we can, while we wait.

The Family Diagnosis

When someone is diagnosed with cancer, the ripple effect of that diagnosis goes a long way. I didn’t think much past Bastian when we got the news, because the cancer was his, his life was at stake, his body was under attack. I had yet to find out the impact this disease was going to have on the rest of the family.

The day we drove to St. Louis, we thought we were just going to have the docs rule out leukemia. What was intended to be a day trip to the clinic ended up being a week-long stay, full of tests and biopsies and the placement of Bastian’s first central line. His cancer was given a name, and we were given a treatment plan, which included weeks of in-patient chemo, and surgeries, all to prepare for a bone marrow transplant, which was going to require him to stay at least a month in the hospital. A hospital that was 3 hours away from home. Fortunately, my parents lived less than 20 minutes from the hospital, so we had family and a place to stay nearby when we were there. Bastian and I were covered.

But what about everyone else?

My family, my job, my friends… They all had to take a back seat to what was going on. The job and friends part was easy; everyone understood and we were given nothing but support. However, the family part was not so simple. Sure, Gabbi and Maddux understood that their brother was very sick and needed help. But how well does a 15 and 7 year old really take their mother being away from them 2 weeks out of the month? The stress and strain to keep balance in an unbalanced situation became almost unbearable. I am grateful for my partner, and my friends and family for stepping up to fill my shoes while I was away so much during Bastian’s first year of treatment. I spent at least 7 months of that year in a hospital room with Bastian. Seven months that I was not there to see how everyone was really doing, how they were coping with the HUGE changes our family was going through.

It’s now been 29 months since Bastian’s diagnosis. We are on our 4th hospital. He has been through tons of chemo, a bone marrow transplant, 2 different kinds of radiation treatment in 2 different hospitals, a second line placement (due to his first getting infected), numerous tests and scans, and just recently had his 15th bilateral bone marrow biopsy (HUGE needle shoved into his hip bones). And all we’ve managed to do is keep his cancer from spreading. Haven’t improved it any, but at least it’s not getting worse. Prognosis is still the same for him.

And the rest of the family?

I’m seeing a counselor twice a month and have been put on anxiety medication. Maddux is seeing a counselor once a month to help him learn how to process his anger and sadness. Gabbi was just recently hospitalized due to depression and drug abuse, largely due to her not knowing how to deal with the feelings that come with a little brother with a terminal illness. My relationship with my partner has been very rocky lately, and probably also largely influenced by the stress of the reality our family has been thrown into. Bastian’s cancer is not just his. It’s a frightening journey that we’ve all been unfairly put on. His diagnosis belongs to all of us, because it touches all of us in our own ways. Knowing that we all aren’t going to make it out of this journey alive is a hard pill to swallow. It’s a pill that will choke us all if left unchecked.

I am desperately trying to keep my family together, because I know how much we need each other right now. We are all hanging on by a thread, but at least we are still hanging on together.

Cancer Mom 101

If someone would have told me that once I hit my early 30’s I would be balancing a household, 3 children, a relationship, a job, and a social life, all while being the primary caregiver for a teenager with stage 4 cancer, I would have told them there is no way that’s possible. I mean, I was having a tough enough time keeping the first five things going way before my son got his cancer diagnosis.

When I heard those three words for the first time, the whole world stopped moving. “There’s a mass.” My dad raised me to approach problems as practically as possible, so I asked for a plan right away.

A mass? What does that mean?

Where is it? How big is it? Can we take it out?

When do we start? What happens next? How long do we have to do this?

What’s the prognosis?

Tough questions, with even tougher answers.

In those early days, I did my best to stay away from internet search engines and stick to the information and websites that the doctors directed me to. The facts were scary enough without adding the terrors of all the worst case scenarios that the internet can give you. I learned all I could about Neuroblastoma and the drugs we were planning on giving to Sebastian to try and fight it. I learned about blood counts and what an ANC is. I learned about transfusions and Bastian learned his blood type (“I’m A+ so I’m better than you!”) We all learned to keep little garbage cans stashed everywhere for when the bathroom was too far away. Hand sanitizer became a way of life.

Sebastian’s prognosis is poor. Due to his lack of response to treatment so far, he has a less than 5% chance of surviving this disease. It’s hard, being the parent of a young man facing the reality of a terminal illness. This is a time when he should be worrying about impressing the girls/guys, not being concerned about how because of chemo, his hair is so different than everyone else’s. Flushing his central line is part of his daily routine, and he’s been handling his own flushes since he was 11. “It’s not fair” comes up on an almost daily basis, but we do our best to not think too far ahead. Sebastian still goes to school most days, he has sleepovers with his friends, and we have Harry Potter marathons and stay up until 2am. He still has chores, cleans his room, and gets in trouble for not doing the dishes at least once a week.

I am grateful for the powers of social media, as that is the outlet we use for getting information to our friends and families. Trying to do things by phone those early days was just too emotional of a task. I ended up sobbing by the end of each phone call. We have a Facebook page that we update regularly. No secrets, no surprises. It releases the huge burden of always having to answer the question, “So, how’s Sebastian doing?” Most people already know what’s going on, so when we see them, we don’t have to go through explaining recent tests findings, or what side effects he’s experiencing. We can just talk about what fun thing we did last weekend, or what movie we’re gonna watch tonight.

For now, life continues on. And that’s all I can ask for. We will deal with tomorrow when it gets here.

Welcome Dana!

Lacuna Loft is excited to start 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 Dana!

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Dana Major is a single mother of a 17 year old daughter, and 13 and 9 year old sons. Her 13 year old son, Sebastian, was diagnosed with Stage 4 Neuroblastoma when he was 10 years old. Being the primary caregiver for a child cancer patient, as well as a full time mother, is a rather intricate juggling act. When she briefly hangs up the supermom cape, she is the office manager for a local church. Dana is also an artist and owns her own photography business, Mayhem Images.