glioBLASToma

Yesterday marked the one year anniversary of the day that forever changed our lives.  I recently went back and read that first entry.  I never go back and read my entries after I have posted them.   I find the writing process so painful, and yet cathartic that once I'm through it-I'm ready to move on to the next wave of emotions and information.  Seeing those words again didn't bring the initial heartache to the surface again like I thought it might.  It was actually a sense of relief.  I was so grief stricken and afraid of what might lie ahead of us.  The relief that rushed over me was that one year later: I am now the mother of not one, but two beautiful children, we have taken the well-traveled path of cancer treatment, life adjustment, and survival.  Reading that post this time around, knowing that Dow is still here and doing far better than I could have imagined, puts the fear I felt with every word typed to rest.

The past 10 weeks have been a roller coaster of emotions.  Just about the time I'd get around to posting an update, things would change.  The quick and dirty version goes like this:  In April, Dow started receiving Avastin infusions every two weeks, coupled with a double-blind receptor-based vaccine trial that warrants injections every so often.  We spent April and May traveling between KC and St Louis for treatments. At the beginning of June came the dreaded MRI.  Much to everyone's surprise, the results read out as not only non-progressive, but also the existing tumor had actually decreased in size by 75%.  We then spent the next few weeks tapering down Dow's steroid dose to eventually nothing.  By the middle of the month things were not quite right.  He seemed to be sleeping more and just seemed generally "off." On a particularly "bad" day the confusion seemed extreme (time deficits, and trouble with basic tasks) so I called the oncologist at KU.  She told me to take him to the ER and I did.

After 12 long hours in an ER bay we were finally sent to a room on the cardiac floor.  CT of his head showed no change, but he appeared to be hypoxic and need oxygen.   A chest CT to rule out a pulmonary embolism, but showed mild congestive heart failure and pulmonary edema.  All arrows pointed to a rare reaction to the Avastin.  This seemed to be nothing a dose of diuretics couldn't fix.  By the next morning he was off the oxygen and appeared slightly improved.  I went home for a few hours to spend time with Sloane and Brandt.  When I returned in the evening, things were amiss. Dow had a hauntingly absent gaze and the confusion had multiplied.   After attempting to shave and shower, it was very apparent something was wrong.  I notified the staff and they immediately called a code stroke.  A trip back to CT and general physical exams pointed to small focal seizures and not a stroke.  Over the next couple of days he continued to experience the seizures and with medication adjustments they finally improved.  Because of the new, severe symptoms a new MRI was ordered.

Dow was admitted on a Tuesday, and by Friday had markedly improved and seemed to be on the mend.  That afternoon we had a meeting with the rounding oncologist and her gaggle of residents.  The news was soul crushing.  The MRI showed aggressive tumor progression.  We were sent home to be with our family and to contemplate that we had several weeks to a few months at best to be together.  I immediately called the team at Washington University to schedule a meeting of the minds and sent every shred of information that had been collected during the hospital stay.  Finally, one week after getting that devastating news I received a call from Washington University.  Their team of experts said the scan was relatively unchanged from the scan done at the end of May.  They were not seeing progression, but increased swelling due to the steroid taper which in turn caused the series of seizures.  They felt that he should continue with the vaccine trial but venture down a different chemotherapy path due to the reaction he had with Avastin.

It seems hard to believe that two sets of experts can look at the same scans and see completely different images.  That's the reality with this horrid disease.  It's all a guessing game, and no one really knows exactly what is going on.  We just monitor by symptoms, which detrimental or benign, manifest in the same manor.  A scan, which should be an objective piece of information, ends up being subjective to whomever is looking at it.

We are sticking with the second opinion and clinging to the fact that we may have more time than we thought.  We will be celebrating this Independence Day feeling liberated.  Last year I felt it was so ironic to be shackled with this devastating news.  I didn't know what to expect, I didn't know how life was going to change, and I didn't even know if we'd be here together this year.  While life has changed dramatically, everyday is still a gift and we were able to share this milestone will our loved ones.

The Worst Job You'll Ever Have

Sitting in this waiting room I see old people, young people, men, women, black people, white people, skinny and fat people.  There are baldheads, hat heads, scarves, wigs, and heads full of hair. I see spouses, mothers, fathers, sisters, brothers, friends, family, and private caretakers.  Cancer doesn’t take applicants. It doesn’t just accept those who have the prerequisites for it.  It doesn’t care about your GPA, community service or your internship.  It doesn’t care if you’ve been a garbage man for 30 years, a doctor for 10 years, or a stay-at-home mom raising her 7 children.  It doesn’t care that you’ve just retired or if you’ve just started your family.  When you get its call, you will take it, it won’t leave a message.  It expects you to drop everything because it has become your new full-time, limited benefits, job.  You may get some occasional time off, but never the promise of retirement.  It is the ultimate over-worked, under-paid scenario.

Our trip to “Saint Loolis” as Sloane affectionately calls it couldn’t have started out any better.  The kiddos did great with the 4.5-hour drive and we arrived at our hotel around 8pm Tuesday evening.  After the arrival of my dear friend Lindsey, we headed to the indoor pool to get Sloane some playtime.  After She proclaimed this was “the best day everrrrr” it was time for bed and an early wake up for lab work.  Dow, Brandt and I headed to the cancer center for labs and paperwork while Lindsey and Sloane walked to the St Louis Aquarium.  We finished with scheduling and a preliminary workup knowing Dow would be back for an Avastin infusion and trial drug injection in the morning.  After a traumatizing encounter with man-eating macaws at the aquarium’s entrance, Sloane decided that trip needed to be nixed before it even started.  As the day went on, Dow’s anxiety seemed to increase and we decided to go ahead and send the kids back to Kansas City with Lindsey so they could be in their environment.   We spent a lovely evening bowling, and trying to relax as much as possible.

This morning has been frustrating.  I know it’s just the first day kinks, but even when you think you’ve done everything to prepare-something goes wrong.  Between insurance red tape and pharmacy hold-up this already emotional day has become more stressful without even having a drug yet.  The plan is to receive the trial injection, followed by a 30 minute Avastin infusion, and a one-hour wait period for side effects.  We will then head back to KC to be with our little ones.  Unless I post another update, assume that all went well with medications and that we are tentatively planning to be back every 2 weeks for treatments.

Rarely does cancer affect only one person.  It takes its toll on the family, friends, and community surrounding them.  Life won’t stop for cancer.   Bills still have to be paid, lawns need to be mowed, and toilets have to be scrubbed.   I have seen firsthand in our lives the way people band together to help ease the stresses on our family.  Childcare, lawn care, meals, donations, the list goes on and on, and we are forever in the debts of those who have stepped up to take part in our journey.  In this waiting room microcosm, I am seeing all the different ways people cope with this garbage pail disease, and I am in awe of the way humans come together to care for one another in times of need.  

Fear of the Unknown is Far Worse than What is Known

The last 3 months have had its ups, downs, and everything in between.  Since Dow began the clinical trial at KU we have been living 8 weeks at a time.   He receives MRIs on this schedule.  So while we have done our best to enjoy life, there has been an undercurrent of anxiety. Always waiting for the other shoe to drop when scan time rolls around.

I have learned in the last 9 months that fear of the unknown is far worse that what is known.  Last summer, we had no idea what the future held for us.  What I know now is that we have been able to lead relatively normal lives since diagnoses.  We have been very fortunate that Dow has had minimal side effects from surgery, treatments, etc.

Last week that shoe finally dropped, and Dow’s MRI showed tumor progression.  After a lengthy discussion with our local oncologist we decided to head back to Washington University in St. Louis to pursue other options.  We returned home knowing we had several paths we could choose and the situation isn’t completely hopeless.  After an emotionally charged weekend, we were informed this afternoon that he is not a surgical candidate at this point in time.  This news is bittersweet.  Another craniotomy is the best method of tumor elimination, but I’m not sure that my heart could handle such emotion again, so soon.  It is now up to us to decide on which trial we are going to place our bets.

This is a horrific disease.  It is all consuming, with no real treatment.  It has affected every aspect of our lives and just as we were learning to accept our new reality, the consternation this development brings is devastating.  We have started the grieving process all over again.

Even though this is a major setback, we know what we are dealing with.  We’ve been living with a monster in the closet, but now we know what it looks like and it’s just a matter of keeping it at bay.  Our 2 year-old has started noticing strange noises.  When she gets scared, we remind her to see what it is, because she will feel better.  This is the same way we are approaching this.  The treatments may get worse, and the symptoms may be more prevalent, but we are prepared.  The fear of the unknown is far worse than what is known.

A dear friend has recently started the TEAM DOW FUND in our honor.  This is to help alleviate the increasing costs of treatment, medications, and now travel expenses.  Below is information for those who wish to donate.

TEAM DOW FUND

608 Rosewood Circle

Raymore, MO 64083

A Year in Review, Means a Year in REAR VIEW

This time last year,  I promised my husband that 2013 (because 13 is one of my favorite numbers) would be our best year yet...flash forward to the present, and we know that wasn't quite the case.  Though it wasn't our best year-it has been the most eventful.  I've been chomping at the bit to get out of this year and into the new, but in my time of reflection, I have remembered the good, the bad, the ugly, and most beautiful moments of the year.

We started 2013 off with a bang. A nonstop, fun-filled trip to Las Vegas with great friends and the opportunity to cross and item off our respective "Bucket Lists." Cage-side seating at a UFC event, prefaced with a sushi dinner-quite possibly Dow's dream date.

In early March, we were back in the swing of international traveling and deep in the crystal blue waters of Honduras.  A two-week trip to Utila/Anthony's Key focused on diving, whale sharks, and a deserted beach. Perfection.

3 days after returning from Roatan, Dow gave me a hug, and he knew.  He urged me to take a pregnancy test and we were elated to find out we would be expanding our family. Later he said, he could just feel it when he pulled me near. I'm convinced it was just the extra lbs from our over indulgent vacation, but he insists otherwise.

By late June, the headaches and light sensitivity had started and our lives were forever changed.  We ironically spent Independence Day shackled with a devastating brain cancer diagnosis.  Determined to still celebrate the holiday weekend, we shot fireworks with family and friends and tried to maintain some normalcy the weekend we returned home.

After establishing our "new normal" we conquered brain surgery, several rounds of chemotherapy, and radiation.  Never knowing what lie ahead with the next step, the unknown has at times been paralyzing.  With each step, Dow has amazed me in every way with his strength, attitude and will.

This November, we experienced the most beautiful moment of the year.  The arrival of our perfect baby boy.  That moment is quite possibly the most emotional experience I have ever had.  Unabashed joy pierced with fear, anxiety, guilt, and sadness.  Then just hours later, the threat of losing him.  Two weeks in the NICU will definitely make you thankful for the sleepless nights with a healthy baby.


Sixth Months ago I wasn't sure I'd get to ring in the new year with my husband.  A disease process with a grim and sporadic diagnosis among it's patients, we braced for the unexpected.  Dow set a short term goal of us experiencing  a normal delivery for our baby boy.  That meaning him by my side, catering to my every need. Healthy, with no protective masks or gowns for his or Brandt's safety. We accomplished this and so much more.  With the unexpected curve ball of Brandt being septic, Dow was back in his element.  He managed to be involved with every aspect of Brandt's care, soaking up every bit of NICU knowledge he could and being an absolute rock for me.  At a time when I couldn't even walk into my son's hospital room because I couldn't bare to see one more loved one sick, Dow was there by his side and also mine.  That two-week period proved once again what I have said from the day we met.  Dow is one in a million.

The hustle and bustle of the holiday season compounded with a newborn, two year-old and the beginning of a medical trial has taken a toll on Dow's energy. He remains very active, but we are cognizant of how he's feeling and try not to schedule too many things.

Analysis of the past year has put so much into perspective.  While I would typically be stressing about the not-yet-lost baby weight and what I might wear for a New Year's Eve outing, I am instead thrilled to be sharing an intimate dinner with good friends and content to pull an old dress from the closet.  I won't spend this evening worrying it will be the last New year's Eve we spend together-I will instead enjoy it and be looking forward to a fresh start because I can say with confidence that from my soul I feel we have many more to share.

The only resolutions I plan to make are to do my best to keep my family happy, healthy, and enjoy every moment.  Though I have learned so much about myself, love, family, and relationships, I am ecstatic that this year in review puts this year in rear view.                                                                          

                            

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.