A Brain Cancer Diagnosis from One Mother’s Perspective - Nikki Austin

What does it mean to have a child diagnosed with brain cancer?  Quite simply, it means our life is forever changed.  

The week before our son was diagnosed, we were unpacking from a camping trip, trying to get back into the swing of back to school and looking for answers to the mysterious headaches that Matthew had been having for 6 weeks.  I remember I was stressed because I was behind at work and our schedules were filling up with football practices and dance class.

One week later, on September 7, 2012, we finally got answers ….but not the answers we were expecting.  Our son was diagnosed with an inoperable brain tumor called diffuse instrinsic pontine glioma (DIPG).  The prognosis for this type of tumor is poor, with the percentage of 3 year survivors in the single digits.

In that moment when the doctor delivered the news, our life as we knew it ended and we began a new life.  Cancer life.  When you’re told “this is as bad as it gets….he’s got a long hard road ahead….” lots of things go through your mind.  I can remember breaking the news to my cousin and sobbing into the phone “I’ll never see him get married.  He’ll never graduate high school or drive a car.  How can this be happening to us?”  At the time I couldn’t even comprehend those concepts.  As I type these words today, I still can’t comprehend those concepts.  

Cancer life involved our moving to Seattle for 8 weeks and living at the Ronald McDonald House while Matthew underwent radiation treatments and chemo to shrink his tumor.  Our daughter lived with my husband’s parents while we were gone and we got to come home on weekends to see her.  It was hard on our whole family and as a mother I felt horribly guilty every Sunday when we had to leave her for another week.  At the same time, I loved the one on one time we got with our son.  I loved our afternoon naps and being able to devote 100% of my time to him.  My husband and I both took leaves of absence from our jobs so we could be there for our son.  Luckily we have amazing friends who took care of our home, animals and anything else that came up while we were gone.  

As the shock of Matthew’s diagnosis wore off, sheer panic set in.  We began to realize that we couldn’t fix this.  We were completely helpless.  I don’t think there is any worse feeling as a parent than knowing that we can’t make this better.  For me, it’s the most difficult part of this whole journey.  This boy who I gave birth to is going to die from this beast and I can’t save him.  It’s the one thought guaranteed to drop me to my knees and paralyze me with anxiety.  

The day after Matthew’s diagnosis as I was feeling terrified and completely out of control, I received a piece of wonderful advice from a physician friend of mine who treats cancer.  She told me “you don’t know how much time you have, so go and make memories.”  That became our mantra.  We made a conscious decision on that day that we were going to make the best out of our time together.  We could sit around feeling sorry for ourselves and drowning in despair, or we could choose to live our lives.  

We have learned to appreciate even the simplest times that we get to spend together.    When some moms complain that their child didn’t make the tournament baseball team, I’m thankful beyond words that my child lived long enough to play baseball this season.  While some moms are frustrated because their child didn’t make it into the accelerated learning program, I’m just happy that my son is still able to attend school full-time as he continues on chemotherapy and struggles with the side effects that the radiation to his brain has left him.  This brain cancer diagnosis has given us a crystal clear perspective on our life that I’m pretty sure we never would have had if this didn’t happen to us.

There are so many negative aspects to this horrible brain cancer journey that we’re on.  But there are some wonderful things that we’ve experienced.  We’ve been touched by a generosity that we never knew existed.  We’ve learned to take nothing for granted because we know all too well that it can be taken away from us in a heartbeat.  We’ve made wonderful friends on our journey….and we’ve cried as we learned that some of our friends have lost their fights.  

Tonight, as I finish this, I have just un-packed from another camping trip 8 months after our son’s brain cancer diagnosis.  The stress in my life is much different than the stress I had previously.  Yes, our life is forever changed.  I would gladly trade the crystal clear perspective, the taking nothing for granted and all the wonderful things we’ve experienced to go back to our old life.  The old life where I didn’t know anything about brain cancer and the stress in my life was caused by busy schedules and meaningless drama.  Unfortunately, we don’t have that choice.  So we’ll continue fighting.  And living.  And appreciating.  And making memories.  Because although we can’t control the fact that cancer has changed our life…..we can control how we choose to face this journey.

~ Nikki Austin

My Daddy has Brain Cancer - By Emma Pearson

Dealing with the news of a cancer diagnosis is hard on anyone. Today Josh Pearson’s 12 year old daughter Emma is sharing some of her feelings about her dad’s diagnosis of brain cancer.

Remember More Awareness + More Research = A CURE!

How has life changed since dad was diagnosed with brain cancer?

He can’t drive and we have to rely on my mom to take us everywhere. My mom is really busy with school and taking everyone places. My grandma helps when my mom can’t go two places at a time. Mostly my life is pretty much the same, except when my dad has his treatments I can’t have sleepovers at my house because he gets really tired and my mom doesn’t want us to bother him when he’s resting.

How has daddy changed since he got brain cancer?

Dad doesn’t do as much stuff as he used to like take us fishing or play with us. He can’t really play catch with my little brother anymore. My dad sleeps a lot more now. My dad’s brain cancer makes him shake when he walks and he uses a walking stick to get around. He doesn’t have as much energy as he used to. Dad has these seizure things that make him talk funny every now and then. Sometimes my dad’s medicine makes him throw up and its gross. His medicine can also make him kind of in a bad mood. Mostly, I am used to it now.

How did you feel when your parents told you your dad had cancer?

I was surprised and shocked, I guess. I felt kind of scared that the doctors might not fix him and that the cancer could keep growing and growing and growing. At first I was afraid that he might die, but it’s been 2 years and the doctors are still giving him medicine to make him better. Sometimes I still worry that something bad will happen.

What advice would you give other kids whose parent has brain cancer?

It may seem like it sucks at first, but after awhile you’ll realize that your parent could get better and hopefully everything will be ok. Try not to be afraid because the doctors will help them get better. Oh, and make sure you can talk to your friends and parents and family about stuff so you aren’t too sad about it.

What do you want people to know about brain cancer?

Doctors need more money so they can study brains and find better medicine to make my dad’s cancer go away. They have been trying to fix him for like two years and it’s not totally working. I wish his cancer could just go away.

Brain cancer robs so much from its victims - Liz Pearson

“Something showed up on the MRI.” Those six words changed my life forever when I first heard them on July 2, 2011.  The emergency room doctors discovered a tennis ball sized tumor in my husband’s brain. My first reaction was total shock and disbelief. I spent the following day on the couch, unable to move. Two weeks later my husband Josh,underwent a craniotomy and had 85% of his tumor removed.  I honestly do not remember much of how I felt in those few weeks. I kept thinking that this could not possibly be happening to us. Did he have cancer?  Is he going to die?  How on Earth am I going to help my children through this?  How are we going to pay our bills?  Our entire world had been turned upside-down. When we got the call on July 22, 2011 informing us that Josh had Grade IV Glioblastoma Multiforme brain cancer, our worst fears were confirmed. We were told that he would have a year, maybe two if we were lucky. Hearing that news once again left me paralyzed on the couch for a day. I decided that I could not let his disease knock me out of commission again. I have to be strong for Josh and the kids, and I need to do everything in my power to keep things as normal as possible for everyone.

Since his diagnosis our lives have drastically changed. Josh lost his job and benefits, causing serious financial strain. After talking to some amazingly smart financial advisors,they got us on the right track. However, we have still had to make several adjustments to accommodate living on a salary that is substantially less. Another change for us is that Josh is no longer able to drive. I am a full-time student at WSU Tri-Cities, and we have two VERY active children. I am always driving someone to school, music lessons, sports, doctors appointments. Cub Scouts, yearbook, etc.

The most difficult part of this journey is seeing my once very able-bodied husband deteriorate before my very eyes. He now walks using a walking stick (not a cane, because canes are for old people, as he says), his speech has been impacted, as I mentioned before, he can’t drive anymore, his vision has gotten really bad, and his personality has changed.
Brain cancer robs so much from its victims. It leaves them totally dependent on others. We know that there is no cure for this cancer. There is a fine line between being hopeful and realistic. Yes, we hope for good quality of life for Josh for as long as he can get it. However in the end, my husband is going to die....it is not a matter of “if”, but  a matter of “when”. Take a moment to imagine that. Someone that you love is going to die, no matter what you do. I have never felt so helpless and alone. That is why I am doing my best to help raise awareness. There needs to be a cure for families like mine. No other person should have to watch their husband suffer with this disease and then be left to raise their beautiful children alone. People often tell me “I don’t know how you do it”. Honestly, I don’t know how I do it either. There are moments I find myself sobbing on my closet floor because the thought of it all is just too much for one person to bear. I have no idea how I am going to get the kids and I through this, but I refuse to sink. I will do everything in my power to raise awareness for brain cancer. More awareness + more research = A CURE!

Liz Pearson

A personal account of a Brain Cancer diagnosis - Josh Pearson

How cancer has effected my life.

Being diagnosed with terminal brain cancer was very scary.  Some of the initial questions that came to mind were: How much time do I have left?  What is going to happen to my wife and kids?  How are we going to pay our mortgage and bills?  How will this disease affect me?

I was told that there was no cure for this type of brain cancer, and that I would only have about a year or two to live.  I have a decided to try and make the best of my life with the time that I have left.  There are things I no longer can do, such as drive, due to seizure risk and because I have lost nearly all of my peripheral vision. I can no longer go bicycle riding due to balance issues. I also use a walking stick to get around because of the balance issues and the risk of falling. I am not able to use power tools anymore either because of my vision problems, as well as the shakiness that comes and goes. Also, the medication that I am on causes my blood to thin, and if I were to slip and cut myself it would be difficult to stop the bleeding.   When you are 37 and told you can no longer do most of the things that you do on a daily basis, it is devastating. I have always been very independent and the do it yourself type, so it has taken me a while to adjust to having to rely on others to get around.  All of the simple things that I am no longer able to do, that I always took for granted before a cancer diagnosis, have been taken away from me by this disease.

When you are told you have terminal cancer you either dwell on it or make the best of what time you have left.  I am going make every day count.  Since diagnoses I have landed 2 sturgeons over weighing in at over 600 pounds, 4 halibut over 60 pounds and my biggest salmon yet, that was 35 pounds.  I try to get to the gym 3 days a week to keep my strength up.  I am more active with my kids, I get up with them and see them off to school, I now do most of the cooking because my beautiful wife is a full-time student and taxi driver for the kids and myself.  I try each and every day to be a better father and husband.  Before diagnoses I traveled for work 260 days of the year, I missed out on so many things.  Now I get to enjoy their activities. Our 12 year-old Emma is very active with the Tri-City Channel Cats swim team, playing the flute, being on the Yearbook staff at Carmichael Middle School, and participating in Buddy Club for special needs students. Our son Joey is 9 and he is busy with Cub Scouts, playing guitar, playing for the Richland National Little League Dodgers, choir at Badger Mountain Elementary School, and he is now a Level 5 gymnast at Mid-Columbia Gymnastics Academy.  I missed out on so many of these things when I was still working, now I get to see my kids shine in all their activities.

Losing my job after my cancer diagnosis was devastating because not only did we lose our only income, we also lost all of our benefits. We have been paying out of pocket each month for COBRA insurance, because cancer is expensive and there is no way to pay for treatments without some type of insurance.

I promised my wife that I would see her finish her Bachelors Degree in Elementary Education, now all she has left is student teaching.  I am so proud of her; she will be graduating from WSU Tri-Cities in December with top honors.  As weird as it sounds, GBM4 has made me a better person. I volunteer at the Tri-Cities Cancer Center, and I try to help others with small projects around their house.  I know that I am blessed each and everyday that I have.  My days are numbered, because there is no cure for Glioblastoma. We must raise awareness and help find a cure. More awareness + More research = a cure!                 

- Josh Pearson

Exercise...healing, calming, and empowering... By, Aaron Stites, MS

There is beauty all around, enjoy it!

A good family friend is an avid runner. She runs on most days and uses her running time to plan her day and take in the beauty around her. A couple of years ago she was diagnosed with breast cancer at a young age and some of her greatest concerns were how it would impact her family and how she would handle the treatments and the unknowns of cancer. She began her treatments and learned to schedule her high and low energy days with all her activities. Once again running and sometimes just being able to walk was enough to lift her spirit and help her still see the beauty around her even through her challenges, pain, and fear. Exercise, movement, and activity can have a healing, calming, and empowering effect.

There are 3 keys to exercise that are powerful tools to positively affect health – physical, mental, and spiritual.
1.    Look for opportunities to move, even just a little bit, be consistent. Move a little every day.
2.    Listen to your body. It is good to work hard but don’t push hard enough to have a negative effect.
3.    Make it fun. Do what you love and then do what you can.

Exercise and movement causes many positive effects to our bodies. Aerobic and resistance exercise increases heart, lung, blood health, joint and muscle strength. It increases circulation, burns calories, and helps strengthen muscles and bones and improves mood. When we exercise and listen to our bodies we generally make better nutritional choices and stay more hydrated. Bottom line…exercise helps improve health and outlook on life.

The key to making exercise effective and a positive impact is to listen to our body. This requires an honest assessment on how everything is feeling and making the appropriate exercise plan. Just as exercise can be a positive force, recovery is just as important to keeping the body at top performance level. When beginning a new training program or during treatment no more than a 10% increase in training each week, don’t overdo it. More is not always better. Do as much as you can and reap the benefits of exercise.

Sometimes training programs are set up based on what we used to do or on a recommendation from someone else. This can be good or bad. When making the decision to begin or increase/change training it is important to think about what you need and like and customize a program. It needs to be fun! Something you are looking forward to doing. This is one of the best ways to stay consistent with exercise. Move and enjoy the fact that you can.

There is beauty all around us and the greatest individuals still look at life with awe and wonder regardless of the circumstances they are in. There is so much to experience and enjoy in the world, sometimes it means taking a few small steps to see it.

Aaron Stites, MS
Wellness & Performance Director
Therapeutic Associates - Kennewick