Thankful Thoughts

Throughout the month of November, I have trolled social media reading countless "30 Days of Thankful" posts.  I often found myself being annoyed. There are only so many trivial things this girl can take.  Quickly, my annoyance turned to anger and resentment.  "Why do these people get to be thankful for good coffee and sleeping in, while I sit here and wonder if my child is going to make it through the night?"  I have since reminded myself that even just 6 months ago, my list would have been very similar to the seemingly shallow posts I was beginning to despise.  In just a few short months my family and I have learned more life lessons than most people do over the span of 70 years.  A roller coaster of tears and tragedy, love and laughs we have emerged different people.  Better people.  While I  can still appreciate the smalls joys in life, I have learned what to truly be thankful for.

First and foremost, baby Brandt is finally home.  After 12 days in the NICU, being on life support, having a spinal tap, and utterly fighting for his life, our beautiful boy is happy, healthy, and a true bright spot in our lives.  He's laid back, loves to snuggle, and eats very well.  I am so thankful for the phenomenal NICU nurses, charges, NNPs, neonatologists, and unit secretaries that helped care for Brandt and made us feel like  family during our stay.

Dow had a follow-up MRI this week.  The images appear to be stable and we are one step away from starting the first clinical trial, but his physician is so sure we can make the last hurdle he is scheduled to begin December 2.  The people we have met during this process have made the unbearable moments bearable.  Neurosurgeons and oncologists to pharmacy techs and insurance case managers. These guides have been so helpful every step of the way and have made this maze navigable.

And to the countless family members, friends, coworkers, and acquaintances: we are so thankful to have you in our lives.  We have been humbled by the love, support, and multifaceted generosity that all of you have given.  These are the things I will spend this time of giving thanks thinking about.   I have many more than 30 things to be thankful for, and only one day to express them.  This gesture is small and doesn't even scratch the surface of how deep our gratitude runs. Thank you.    

Our Enduring Titan

Introducing Brandt Atlas Richards, 8 pounds 2 ounces, 20 inches long.  This is how I thought this post might start.  Then I'd go on gushing about the beautiful baby boy we got to welcome into the world this week, and how his birth was a bright shining light on this crazy path we've been led down.  No, that's not how this post is going to begin.  It will begin with a name we chose months ago for a little boy who we felt was being dealt an unfair hand before he even stepped foot in the world.  How could we have known our name choice would be taken to a whole new level...

The meaning of the name Brandt is sword. A sword is sharp and strong and requires much skill to master. Perfect.

In greek mythology Atlas was a titan. A titan whom Zeus forced to stand at the western edge of the earth and hold it apart from Uranus. Therefore he became known as "enduring Atlas." Also perfect.

With Dow's brain tumor diagnoses midway through my pregnancy, we were aware this child was entering a situation no child should have to deal with.  We felt these two names were a perfect fit for a person we knew that would have to be strong and enduring.

We decided to have a planned induction on 11/07/13 for our little bundle.  Controlled circumstances seemed to be the best option for us.  Everything went great.  They broke my water at 7am and started Pitocin.  My epidural was great.  It was just a relaxed day of waiting for dilation.  Finally, at about 5:45pm he was ready to go.  At 6:10pm I delivered a large, perfect, and beautiful baby boy.  A few hours later we noticed he was a little agitated, and grunting a bit. We asked the nurse to take a look and she assured us it was no big deal. Finally around 11pm we decided to send baby Brandt to the nursery so the two of us could get a little sleep. I woke up around 1:45am and knowing they would be bringing him to me to nurse at 2, I asked Dow to let the nurse know I was ready.  What he returned with was the nurse and neonatal nurse practitioner telling us they had moved Brandt to the NICU.

We then spent the next 18 hours watching our perfect baby deteriorate and NICU staff struggle to find a cause.  He was transferred to a larger NICU, started on antibiotics, and intubated.  Labs were not making sense and things just kept getting worse. Finally some news.  His blood cultures grew out and he was septic from Group B Strep.  Anyone who has  had a baby in the last 20 years knows that before giving birth, mothers-to-be get swabbed for this bacteria because it can be absolutely deadly to newborns.  I was swabbed and my test came back negative, when in fact, I was positive.  They then performed a lumbar puncture to check if the infection had spread to his brain.  More waiting.  At about 11pm we were informed that his spinal fluid was clean. RELIEF.

What is suppose to be one of the most joyous moments in life immediately became one of my worst.  Not only is my baby boy fighting for his life, but his fight is indirectly caused by me.  The last four months have tested me in so many ways.  What I have learned is that I am stronger than I ever thought I could be, and the bond that Dow and I share is unmatched.  There is no other person on the planet I would want to be doing this with.

Baby Brandt improves with each passing minute and so does our morale.   We will probably spend 2 weeks in the NICU, but it will be well worth it to get our little titan home, healthy and happy.

Ob-La-De, Ob-La-Da...Life Goes On, Even in Limbo

It's been exactly four weeks since the end of chemo/radiation round 1.  MRI day came and went leaving a bittersweet ending to chapter one of this epic story.  Dow's oncologist and the local radiologist both gave great MRI readings, just a small spot that appeared to be a mini-stroke from surgery.  We then had to wait for the central reading center to agree, cue a constant pit in our stomachs for 4 days. Finally, the news was that the DCVax trial group read this minuscule spot as possible "pseudo-progression."  What this means is that there was an abnormal spot, but they could not decipher whether it was radiation necrosis (damage from total head radiation) or tumor growth. This news did not exclude Dow from the trial completely, just put him in a waiting period.

Now what? Limbo and a stressful weekend spent weighing every possible option and coming to the conclusion that we did not want to immediately eliminate any option.  After consulting each other and countless personal medical connections, we made the decision to follow our original plan.   We will stick out the waiting period for DCVax. For 60 days Dow will comply with a regimen of chemo that puts him on a 5 day on and 28 day off cycle.  He has already completed the first 5 day cycle and feels great.  When this is finished, they will rescan his head and then  decide whether they will admit him in the trial or not.  After the initial MRI read his oncologist ordered a PET scan just to get another look.  Those results have come back clean, and were read as damage from radiation treatment.  This is just confirmation that sticking to the plan is the right decision and we just hope the trial group agrees in 6 weeks.

I've discovered that even in states of pain, panic, and limbo, life goes on.  We have established a new normal and this has become part of our everyday lives.   We've incorporated so many unaccustomed practices, but have also gotten back to a few of the old ones.  We have managed a short getaway to Nashville, a fabulous departure from the last 3 months.  Just the two of us, traveling, exploring, learning and genuinely enjoying each other's  company. All the things our partnership were built on.

This weekend we were lucky enough to celebrate the 2nd birthday of our greatest accomplishment, Sloane.  This little lady has put everything in perspective and has proven a million times over through this entire process, that we made the right decision to bring her into the world. Birthday cake and balloons were our only worry this weekend, nice.  We are now just 3 short weeks from welcoming Sloane's baby brother into this crazy world.  So many emotions arise when thinking about this, but I know that if he's anything like his sister, we will all be fine.

It's been difficult to explain to people that the only real way to track this disease is through symptoms.  Just because a scan doesn't show tumor growth, does not mean the cancer cells are gone.  It just really means they aren't currently growing.  All these treatments are practiced with the hopes that they will stop or retard regrowth, not necessarily cure.  As long as Dow feels good and has no symptoms, which is the case; I am happy. Life goes on.

Seasons Change and Time Passes

With the arrival of fall, I am reminded of so many things I love.  Turning leaves, pumpkin lattes, endless festivities, and the ghouls and goblins of Halloween.  All making this my favorite time of year.  The changing of seasons and the summer that altered our lives forever coming to an end, prompts thoughts of how quickly time passes.  Six weeks of chemo and radiation have come and gone in the blink of an eye.   As I said halfway through treatment, Dow remained strong and optimistic through the duration of toxic therapy.  A little fatigue presented itself in the last two weeks, but I can honestly say that I'm not sure if it was caused from medication or his dedication to work and family.  Either way, we are fortunate to have had such a great experience due to the support of countless friends, family, and healthcare providers.  I am thrilled to be able to finally kiss and snuggle my best friend on these cool, autumn nights.

Our next plan of attack has always been a research trial, now it's just a matter of figuring out which one it will be.  Dow was originally scheduled for a two week post treatment MRI, for the DCvax trial. Plans have changed a little.  Dr. Tran, one of the foremost glioblastoma researchers personally called Dow to request an MRI one week following treatments' end.  After six weeks of constant assault on the brain's tumor sight, it is common for MRIs to falsely show abnormalities that can cause patients to be excluded from particular trials. Dr. Tran wanted to be sure that if Dow happens to be excluded from the local trial that he can immediately be included in St. Louis's research.  They are currently running the receptor specific trial that he qualified for.  So within the next week, we should know which path we will be headed down.

I have very little information on the trials but I can try to explain the premise of each.  DCvax is a series of 21 vaccines that have been created from Dow's collection of tumor mixed with his own neutrophils.  These will then be injected back into his body and the hope is that it will recognize that his immune system needs to attack these particular cells. This trial is only for newly diagnosed glioblastoma patients. The trial at Washington University is also a vaccine based trial, but this vaccine targets a receptor that only 20% of glio patients test positive for.  This is for the newly diagnosed and patients with a recurrence.  So qualifying for the new diagnosis trial and then move on to the recurrence trial if need be is best scenario for us.

Season's change will forever be bittersweet.  The rebirth of nature and the expiration of time. Spending forever together never seemed long enough. Now with the possibility that "forever" could be cut short, my greediness has diminished and I will be eternally grateful for every changing season we get to spend together.

EPIC, not tragic

Today wasn't a marathon...and it wasn't a sprint.  It was a leisurely 3.1 miles to be exact. And very symbolic of the distance we have gone in this journey.  Today we participated in the Head for the Cure KC 5k.  What started as a few coworkers getting together to run in honor of Dow, bloomed into a massive turnout of support from, friends, family, coworkers, and a plethora of lives who have been touched by Dow.  The overwhelming turnout was comforting and humbling and we would like to say a big thank you to those who have shown our family support in so many ways.

This week also marked the halfway point for chemotherapy and radiation treatment.  Before our new life, I had no idea what these two treatments entailed.  I will now give you some insight into our past three weeks and the 3 weeks to come.  First, Dow went for a trial radiation run.  They fit his head with a  mesh mask and mapped his brain tumor location with pre/post MRI and CT scans.  They then pinpointed the exact spots that would receive the radiation.  He has now gone everyday, Monday through Friday for 30 minute doses of radiation.

One hour prior to the radiation he must take his chemotherapy.  For those of you unfamiliar with the potency of Temodar, the instructions from the oncology nurse were very specific.  Dow cannot eat two hours prior to chemo and one hour post chemo.  This medication is so strong that we are not to come into contact with the medication itself nor any of Dow's bodily fluids. The remnants of chemicals that may be secreted in saliva or sweat could cause illness in a non cancer patient.  He now lives in pants and long sleeve shirts at home with Sloane and I so that we do not have direct skin-to-skin contact with him in case of sweating.   He does all of his own laundry seperately so that I am not put at risk of handling any chemical residue that may be on them. The human touch is a very powerful thing and we have always been an affectionate couple.  Not being able to give me a kiss goodnight and not being able to pick our daughter up if he's been sweating has been extremely difficult.

As far as side effects go, Dow has had hardly any.  He has strictly adhered to medical instructions, diet, and supplements.  Whether his phenomenal tolerance is due to this or his shear determination, we will probably never know.  Whatever it is, it's working.  He still has good energy, a great appetite, and continues to remain physically and mentally active.  His first round of labs came back completely perfect and his weight has not budged a single pound in either direction.  As of this week the only real side effect has been that the hair where radiation takes place has finally fallen out.  So he has taken this opportunity to shave his head and do a little less in the primping department.

Being at the midway point of treatment brings relief and angst.  Knowing how well this leg of the race is going makes it much easier to handle. Though, with the end of standard of care treatment comes the foreboding feeling of finding out if, and how well it worked; and where we go from here.  Plans have always been to continue on with the DCVAX trial, but the fear of hearing the words that all of this effort has had no impact on remaining cancer cells is paralyzing and  would be like receiving diagnoses all over again.  There is no real way of telling how well treatment is working, just monitoring symptoms  and occasional MRIs. Given how well everything has gone up to this point, I can't imagine this being anything but EPIC, not tragic.

Wisdom Comes Through Experience, Not Age

Sitting on the pier at Fisherman's Wharf eating a delicate, fresh caught piece of fish is where I should be.  Sightseeing, and searching for the perfect piece of artwork for our soon-to-be beautiful baby boy, is what I should be doing this weekend.  August 3rd will mark my thirtieth year on the planet, and a quick getaway to San Francisco is the way we planned to celebrate. While I should be spending this week leading up to a milestone birthday contemplating the departure of my twenties, I am preparing to embark on a journey of chemotherapy, radiation, and clinical trials instead.  As I sit here and watch my best friend endure the modern, amped version of blood-letting (he is undergoing apheresis with the hopes of creating a tumor vaccine from his own monoclonal antibodies)  I have a whole new perspective on the wisdom that comes through experience rather than age. 

Thirty should bring the sting of a carefree time gone by, and the relief of moving forward to a more rewarding stage of life.  Self introspection, confidence, and priorities should be coming into focus.  Luckily for me, finding Dow at such a young age gave me these shifts much earlier than anticipated. I am well aware that I have done more living before the age of thirty, than most get to do in a lifetime.  Finding a partner who has loved me from the moment we met, truly and unconditionally has given me the courage to do, see, and feel the things most people do not have the tools to practice until much later in life.  Together we have put a descent dent in our respective "bucket lists," conquered fears, and found new hobbies.  From diving with great whites, African safaris, and tropical getaways to post night shift breakfast dates, friendly get-togethers, and everything in-between we have run the gamut of experiences. Good ones, bad ones, some that make for great stories, and some that should never be repeated. Just when I thought there wasn't anything we hadn't done together, a brain tumor shows up to give us the ultimate lesson in life experience. 

When most thirty year-olds fear the appearance of wrinkles, a slowing metabolism, finding someone to settle down with, job security, etc.  My superficial fears have been replaced by the reality of possibly being a single mother to two very young children, an immuno-comprimised spouse, and the paralyzing thoughts of spending the rest of my years alone.  When I should be basking in the glow of my second pregnancy,  I am more tortured by the fear the internal stress I feel is leaving an imprint on our innocent, unborn baby.  I feel a sense of overwhelming guilt that November will bring not only pure joy, but more responsibilities only to compound the newfound ones.  

I am finished lamenting the hand we have been dealt, and I am now in a position to embrace our new life and cling to it with passion.  Today is much more appreciated, and every moment is tucked into my memory. Our getaway has been only postponed, not cancelled.  Due to the circumstances, my wonderful husband, even in his semi-fragile state has made arrangements for dinner at our favorite local restaurant with a special menu just for us to accommodate the new dietary guidelines he must follow.  We have always shared a love of fine dining. So while this gesture may seem self-serving, it's the perfect gift for us to add to arsenal of wisdom inducing experiences.

 I wrote this original entry on Wednesday.  Today we got word from Washington University that Dow's tumor tested positive for a particular receptor, which qualifies him for even more treatment options later on down the road.  Only 30% of GBM patients test positive for this receptor!  This is great news, and the best birthday present I could have received this weekend.

Life Can Be Many Shades of Gray

I promised to use this outlet as a way to keep everyone informed, so here is a rundown of our new life since craniotomy surgery two weeks ago. Everyday has been busy, but everyday has also been a gift.  From the moment we arrived home, Dow has been not only in "survival mode" but "change my life-change the world mode."  We weren't home even 30 minutes before we were on the go for knowledge the local bookstore had to offer on diet, yoga, meditation, and cancer.  Then  it was a trip to Whole Foods to scour the aisles for healthy, organic, non-processed nutrition for his healing body.  With an  outpouring of support and information from friends and family we spent the weekend sifting through mountains of data for what we felt would be the best plan of attack.  Though the first weekend home was trying, with new medications to manage, a toddler to love, and a roller coaster of emotions to deal with, we survived.

 By Monday we had contacted  a therapeutic yoga instructor, an integrative medical physician with a specialty in oncology nutrition, and Dr. Tran-a great researching mind in glioblastoma trials at Siteman Cancer Center in St Louis. With a great day trip to the Gateway City we found promising clinical trials to keep in our back pocket for plausible battles later on down the road. For now, we plan to continue on with the "standard of care" practices which include chemotherapy and radiation in tandem with the DCVAX trial at KU and the most intriguing element, a ketogenic cancer diet.  This diet operates under the premise that cancer cells need sugar and carbohydrates to function and grow, therefore if you starve them of these things, they will not function and grow.  On the days he went to work, Dow's stellar diet previously consisted of Dr. Pepper, a Snickers Bar, 2 bottles of 5-Hour Energy, and a package of gummy bears...if he was lucky.  So the new found passion for clean eating, low carb-no sugar diet is nothing short of a miracle!  Including yoga, meditation and visualization has also become a piece of this very complex puzzle.

Dow is hoping to do some positive work in the medical field while he undergoes treatment.  Realizing his current work situation of 12-14 hour night shifts is no longer an option, he plans to do some administrative work for the critical access hospital that currently employs him.  Having been on the other side for so long and now being thrust into the patient aspect his eyes have been opened to the flaws of the way healthcare is being provided and has many ideas and processes running through his busy mind to better patient care and healthcare worker environment.   He is literally chomping at the bit to build a great medical team and practice at Cass Regional Medical Center that provides top level doctors and nurses with a great environment to provide cutting edge Emergency Medicine to the deserving people of Cass County.

Today we had a two week check-up with the neurosurgeon, who Dow affectionately refers to as "The Wizard" and our first meeting with his oncologist.  Sutures came out and he was cleared to take Sloane to the pool.  We will return in another two weeks for a final surgical check.  The oncologist says chemo and radiation will begin August 5th.  As she gave us the rundown of the ins and outs of glioblastoma multiform treatment I found myself overwhelmed with emotions because it was like getting hit with the diagnosis all over again.  The best analogy I can give everyone is that GBM is like the glitter of diseases. You can clean the pile of glitter up (tumor resection), but there will always be specs left behind (cells) and these specs are what the chemo, radiation, and clinical trials try to pick up from his brain.

For those of you who know Dow personally, things have always been very black and white for him. You never have to guess his opinions, moods, emotions, or where you stand with him.  With diagnosis has come self-introspection, intellectual and emotional clarity, prioritizing, and a new found passion for work and all paths to healing. Suddenly life has become several shades of gray.

Life's Not Lived On Paper

I should have known...I should have known that this perfect life I've been living was too good to last forever. A seemingly whirlwind romance, that has yielded 7 blissful years of world travels, adventures, and finally the greatest responsibility you can share with someone...children.    On paper, Dow and I looked like the quintessential cliche.  He, a frivolous doctor and I, a young blonde looking to snag the "ultimate" catch. With a 14 year age gap and very different life experiences, many were skeptical about our respective motives.  But life is not lived on paper, and this works.  From the moment we met it was obvious we were smitten, which immediately turned to love, and mutual respect.  We share everything, including a brain...which makes this so difficult.

What had appeared to be a stubborn sinus infection turned to an excruciating headache last week. Dow being an ED physician avoids hospitals at all costs, so when I offered to take him to the emergency room to get this headache checked out and he agreed, I knew something was going on. We were quickly seen, quizzed, and he was whisked of to get a CT.  As we waited for results, we joked about the fact he'd never really experienced a headache how silly he was going to feel when they told him, it was just sinus pressure.  Then it hit us like a ton of bricks. "Dow, you have a brain tumor."  The phrase echoed in my head as I processed the words. Having spent many years working in a hospital, I'd always thought about my reaction to crushing news like this as I had seen it delivered to so many people before.  I immediately jumped in the hospital bed with my best friend and began to cry.  As the tiny baby in my belly began to writhe around with the new found stress in his cramped quarters, the contents of my stomach could no longer be contained with the realization that I had an almost two-year old daughter at home, a 22 week baby boy in my belly and a threat that the person who had promised to help me raise these little beings was now facing the fight of our lives.

Those first couple of days in the hospital are all a blur, and the long holiday weekend at home felt like an eternity waiting for our Monday appointment with the neurosurgeon.  The appointment came and went with a flash and we were set for a Wednesday morning right temporal craniotomy.  The MRI showed a rather large tumor with well-defined boarders. All good things for surgical recovery.  Pathology of the tumor would help guide our future steps, but surgery is not a cure and chemo and radiation would be the next logical move.  We spent the night before surgery playing with Sloane and discussing possible outcomes of the morning to follow.  Fear of the unknown is an incredibly powerful emotion.

While the love of my life was meticulously having the layers of his protective shell peeled away, I was being comforted and occupied by wonderful friends and family. 4 hours came and went with good reports and finally we were greeted by the surgeon.  He said things went well, but was concerned Dow may have some left-sided weakness or neglect due to amount of tissue they had to remove.  As I waited to see what laid behind the curtain I envisioned all the different ways I thought he might look.  To my surprise he looked just like the person I married.  Then came the real test.  He looked at me and said "love of my world..." Relief! He knew me, he remembered everything.  No apparent memory or cognitive losses, and fully functioning extremities one hour following brain surgery.  Nothing short of a miracle.  The following days have been spent astounding family, friends, and medical personnel with his determination and recovery response.  We are now at home, two days post surgery and continue to strategize our plan of attack. Chemo, radiation, research trials, clean diet, and positive energy. With the news of a glioblastoma that pathology brought this evening comes even more determination.  The research, statistics, and overall reports can be grim. But life is not lived on paper and words on a page can be much different than reality. We plan to approach this as we have everything else in our life together, surprise everyone and beat the odds.