Good and Perfect: Brain Tumor Awareness

It has been 4.5 years since Adri’s tumor diagnosis, but it is still something that we think about on a daily basis. As she has gotten older and further removed from sickness, I became more aware of how many people were unaware of the ins and outs of what we had/have to deal with as a result of her illness. During May I decided to do a series of posts on Facebook as part of Brain Tumor Awareness Month. Following are my humble attempts to answer some of the questions that have been asked of me.

#1 – Are brain tumors cancer?

Technically, no. A tumor is considered cancerous if it will spread, or metastasize, beyond its original site to other parts of the body. Primary brain tumors rarely, if ever, spread outside the brain, so they are not technically cancer. However, high grade (grade III or IV) brain tumors were generally termed cancer.

What’s confusing is that there is not a consensus terminology even among medical professionals. Some children’s hospitals will refer to some tumors as “benign” or “malignant” while others talk about them being “least malignant” to “most malignant.” The term benign is meaningless and misleading with brain tumors because any space-occupying mass in the brain can be life-threatening. The word “benign” generally means harmless in other areas of the body but that is not the case in the brain. All brain tumors are treated the same was as cancer – with surgery, radiation, and chemotherapy (how much of each is needed is dependent on location, how much can be removed by surgery, cell type, etc.). Other cancers are categorized by “stages” whereas primary brain tumors (tumors that begin in the brain as opposed to metastatic tumors that started somewhere else and moved to the brain) are categorized by “grade.” With other cancers, the higher the stage, the more dangerous it is or the worse the prognosis. The higher grade tumors generally grow faster are more prone to grow back, but you don’t have to progress through the grades of a brain tumor to be in a life-threatening situation, as many low-grade tumors are inoperable because of location. Also, low-grade brain tumors, particularly grade II, may grow back as grade III or IV.

Is all of this confusing? Absolutely. Most people we know in the LGG (low-grade glioma, the broader category that her brain tumor type falls under) community refer to their child’s illness as cancer. Adri has had an oncologist from day one and her case was reviewed by St. Jude (which treats and researches all types of childhood brain tumors). Chemo has never been off the table, however, since neither “cancer” (because it won’t spread other places) or “benign” (since it’s not safe) give the clearest picture, we have always just said “tumor” for simplification and to protect her mind as she gets older. She was two at the time of diagnosis and we told her there was a ball of sickness in her head that the doctor needed to get out. She generally still refers to it as the “ball” in her head.

(My info came from akidsbraintumorcure.org, cancer.gov, my involvement in the pediatric brain tumor community, and countless meetings with Adri’s neurological team which is made up of a neurologist, a neurosurgeon, and a neuro-oncologist).

#2 – How was Adri diagnosed?

A month and a half before her 3^rd birthday, we were eating lunch and in the middle of eating she went into a daze and jerked her head to the right in a way that was very bizarre and unsettling. We didn’t know what it was but we knew it wasn’t normal. That evening while we were putting her pjs on, she did it again. We laid in bed that night trying to convince ourselves that she was acting strange because of a new baby at home and being in a big transition (Cooper was 3 months old and we were a few weeks away from moving), but my mommy gut knew it was more than that. The next morning it happened again so we called the pediatrician and took her in.

The pediatrician in the office also witnessed it and confirmed my fear that these episodes were actually seizes. They were able to get an EEG scheduled for us and we spent the next week watching them increase in frequency with each day.

One week after the first seizure, we were preparing for an EEG. We were instructed to keep her up late into the night, only allowing 4 hours of sleep. The purpose of staying awake is to stress the brain which makes it more likely for seizures to happen during the test. We never made it to that EEG because the lack of sleep led to her going into a prolonged epileptic state where she was unresponsive and 911 had to be called. It was the scariest night of our lives and ended with an ambulance ride at 2am and being rushed into a pediatric ER. The CT that was done in the ER showed a large mass on her brain so we were admitted into the PICU and a neurosurgeon was called. The next morning an MRI confirmed that the mass was a tumor. Four days later, she had surgery. The time between the first weird head turn at lunch until we watched her be wheeled off to an OR to have brain surgery was 12 days.

#3– If the tumor wasn’t completely removed, what does that mean for Adri’s day-to-day life and future?

Adri had surgery to remove the tumor but her neurosurgeon wasn’t real aggressive in removing tissue at the base of the tumor because it was very close to her motor cortex and he didn’t want to cause permanent damage. A follow-up MRI the morning after surgery showed something small was still there but at that point it was too difficult to tell whether or not it was just scarring from the surgery or residual tumor. It has been the follow-up MRIs since that time that confirmed that it is in fact residual tumor. Since the tumor was almost removed in full, the hope is that the spot that remains would not change. In four year it has not changed and the further removed we are from surgery, the better the chances are that it will not change. If it were to grow again, her oncologist and neurosurgeon would determine whether chemo and/or surgery would be the best option. Obviously our prayer is that none of that would happen. She will have regular MRIs for the rest of her life.

The blessing of having a community of people who have had a similar diagnosis is the emotional support you get and just the general feeling that someone else understands. The downside is that you become very aware of the stories out there like hers where everything “seems” fine and like it’s over and then you are all of a sudden blindsided again. We recognize that things could change but we don’t live in that fear. I have always said that God allowed my greatest fear to happen in order for me to experience His goodness. I knew from the moment we were in an ER and a doctor was telling us that she had bad news that I had no control at all and had to trust God with my child’s life.

So day-to-day, the spot of tumor that is left does not affect her at all. The greater risk that we face daily and in the future with her is related to seizures. Adri’s tumor was discovered because of seizures but in an odd twist to her story, she was later diagnosed with a form of childhood epilepsy that was completely unrelated to the tumor or surgery when she began having new and very frequent seizures two years later. So she is a tumor patient that also has epilepsy and an epilepsy patient that also had a tumor. Although she has been seizure free for two years, the type of epilepsy she has can worsen into adolescence. Other risk factors for seizures are surgery (since the brain has been cut on) and any abnormalities in the brain (which she still has). Her neurosurgeon explained to us that since her brain doesn’t look the same as a normal child her age, it wouldn’t be uncommon for her to have seizures again or to begin having yet another type of seizure as she matures and her brain grows and develops. That would’ve been a risk for her before the epilepsy diagnosis so there are a handful of risk factors moving forward that are not in her favor. She has had different types of seizures and been on 3 different anti-epileptic medicines but is currently only on one. She has had multiple EEGs over the last four years that have all been abnormal.

#4- If Adri is healthy, why does this matter now?

No other life experience has rocked me as significantly as her diagnosis did. It was traumatic and scary and a nightmare that I wouldn’t wish on anyone. I still physically feel the weight of emotions every time I enter the hospital and I cry through every MRI. The images of that ambulance ride or the ER nurse saying “I am so sorry” over and over still haunt me. But having to learn to live in trust rather than fear has been a great blessing in my life. My marriage is stronger, I appreciate the mundane moments with my children in ways I never did before, and I’m a better friend now because of what I experienced when my burdens were carried by the people around me. My life was impacted in a way that made me want to do something about it. For good or for bad, you don’t go through something like that and come away unchanged.

In our very first meeting with the neurosurgeon he told us that we were getting the worst news of our lives, but for what he does, that was about the easiest conversation he’d ever get to have. There was a tumor and it was big, but he thought he could get it out. Many conversations he had been a part of and still has today are much more devastating than that. We have been aware from the very beginning that we are extremely fortunate that this journey hasn’t been more difficult. I feel blessed to have been able to make multiple connections with other parents of brain tumor patients over the years and I want to fight for them. Brain tumor research is severely underfunded and I want that to change. I want help for the people whose stories looked so much like Adri’s in the beginning but have had years of chemotherapy, surgeries, and radiation. I want to fight for the ones who are tired because they’ve put all their efforts towards caring for a child that is living with physical, mental, and emotional challenges as a result of brain tumor. If sharing our story helps raise awareness then we want to do it.

We also feel very passionate about good local care for children and have done numerous fundraisers and events for Greenville Children’s Hospital and will continue to do for as long as we can. Being treated locally is why we were able to proceed with the closing of our home and I was able to continue nursing my baby.

Ultimately it comes down to gratitude. My daughter has a big fat medical file and we’ve spent thousands on tests and medications and visits and hospitalizations but she is healthy and has lived a very normal life. Medically things have been uneventful for a couple of years and we are thankful, but we haven’t forgotten the care we received and we haven’t forgotten the ones who are in the thick of things. Those are the reasons we keep telling our story and wear gray this month.

#5- “I can’t even imagine going through something like you went through…”

Without a doubt that’s the most common thing that is said to me when people hear our story. Next to that is “if I were you I could’ve never handled it that way.” I’m not even sure what “that way” means but I suppose it speaks to a peace we had that can only be attributed to God. So let me be raw with you. We had twelve days between the first weird episode and the five hours we spent waiting in a hospital room for calls from the OR like “the skull cap has now been removed.” Twelve days doesn’t prepare you for that. A lifetime doesn’t prepare you for that. And anyone that knew me knows that I was not a naturally calm and easy-going person. Josh is, and he was a rock for me through that, but that was not my natural tendency. The week leading up to her diagnosis felt like everything I thought I had a handle on was spinning out of control. I was a nervous wreck and basically cried all the time. I had a new baby, my house was in disarray because we were about to move, and my two year-old was having frequent seizures that looked and felt like something from a horror movie. The night that things escalated we were at a friend’s house because the “keeping her awake for the EEG” thing wasn’t working out well at home and they lovingly offered for us to have a very late night play date with their daughter in an effort to perk Adri up. That worked for awhile and then she fell asleep around midnight in Josh’s lap. About 10 minutes in, she woke up, vomiting and seizing and lost all color. We had to lay her on the couch and her face turned pale and her lips were blue. She was unresponsive even though her eyes were open. She stayed in that seizing state for upwards of 30 minutes. It felt like a million years before the ambulance arrived and while I waited I just paced around the house. I honestly thought I was going to lose my child that night. We loaded the ambulance and sat in front of the house for quite some time because they could not get her to respond. Eventually they turned the sirens on and we took a very speedy trip to the ER. Before taking her in, they let me get on the stretcher and they placed her, limp and soaked in urine, in my lap and wheeled us in together. I don’t have the words to describe how a moment like that impacts you are a mother. It took something that scary to awaken me to the reality that I was not in control at all.

So when people say they can’t imagine, I would say to that, no one can and I couldn’t either. No one imagines those moments with their child. There is nothing supernatural about us that gives us strength to endure watching our toddler in an ICU room with an IV in her neck and a fresh scar from brain surgery. We were not strong, we were very very weak. I still am. I cry every time I remember it. It was painful. The memories are still painful. And then I cry every time I hear of a child dying from a brain tumor because I don’t know how to process that my child had the same thing and has been given a very normal life. My emotions range from grief to joy to guilt. Four and a half years later, there are still quiet nights where I’m the last one awake and I sob at the memories and the gratefulness and the sorrow for those who don’t get to be frustrated at a dramatic 7 year-old because their child didn’t live.

So why share all of this now? Because every day 13 children get the diagnosis we got. Tuesday night a 5 year-old boy in NY took his last breath because of a very aggressive brain tumor that wouldn’t response to treatment. Tomorrow 13 mommies will enter the world of emotional highs and lows that I’ve cycled through. I want help for those moms, those families, those kids. I want other people to be aware that, for kids like Adri who have surgery and then seem to be well, emotionally things will never be the same for that family. They will either live in fear every time their child does anything abnormal or they will have to choose to fight a natural fear that comes on every time their child does something abnormal. Many of these families will often hear from well-meaning people, “oh well that’s great that it’s not cancer,” and wrestle with all kinds of emotions that come with that statement. My hope is that sharing what we went through then and also go through now raises a great awareness about all aspects of this diagnosis.