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?

Indestructible

I still remember the day my boyfriend told me he was Superman.

I was lying on the floor of my high school bedroom, my phone clutched in my hand. We were talking about his upcoming varsity soccer game; the opposing team played rough, and he played goalie. I asked him if he was worried about getting injured, and he laughed. “I’m indestructible,” he said. He didn’t sound like he was joking.

“Indestructible? But what if you broke something?”

“I’d heal.”

I plunged further. “And what if you got sick? Like, really sick?”

“I could fight it off. I’m strong, I’m healthy. No disease is going to get me!”

For a moment, I couldn’t speak. He definitely wasn’t joking, I could tell. He really believed that, at seventeen, he was Superman. And he believed it despite the fact that his girlfriend had been living with cancer for the past three years. Did he think I was somehow weaker than he? Did he think my body just wasn’t strong enough to fight off disease? If he was Superman, and I had a debilitating illness, then what was I?

It was that moment that I realized why I was different, not just from my boyfriend, but from all my peers. It wasn’t just that I missed school for treatments, that I was an expert at blood draws, that a vital part of my body had been removed. I was different because other seventeen-year-olds thought, in the ignorance of youth, that they would live forever. And I knew they were wrong.

For a long time, all I had wanted was to be normal again; to fit in with my friends who had no bigger worries than passing a test or finding a dress for Homecoming. But once I realized this vital difference between me and them, I no longer wanted it quite so much. I understood something they didn’t, and their ignorance, though blissful, would not be as helpful to them as my knowledge.

I learned at a young age that life was short. I knew there was no sense in wasting time, and it was important to figure out how I could live my best, happiest, most fulfilling life. I understood that I needed to love with my whole heart, focus on my passions, get rid of poisonous people and unnecessary things, not in the future, but right now. As a result, I think I got more of a head start on my adult life than my peers did. Maybe I never got the chance to feel indestructible. Maybe it would have been fun, for a short while, to be the Supergirl to my Superman. But the perspective I got from my cancer experience became its own superpower. 

I’ll take that superpower over invincibility any day.

Did you feel indestructible in your youth?  Has that changed with your cancer diagnosis or illness?

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.