Tragic Kingdom, Magic Memories

 

I'm going to waiver from my usual cancer update format this blog go-round.  It's been eons since I've posted an update, so of course it will be sprinkled with cancer bits here and there-otherwise you wouldn't be reading, right? This entry will focus on our recent family trip, and what it's like to navigate the WONDERFUL WORLD of DISNEY with a 10 month-old, almost 3 year-old, and a  nearly blind cancer patient. This will be my stab at my dream job of being a travel/food blogger, in a round about, sprinkled with Disney humor kind of way.

I'll start at the beginning. In mid June Dow was hospitalized for minor seizure activity, due to cancer progression. The attending oncologist told me he may have several weeks to a few months to live....I asked Dow if there was anything he wanted to do. He said he wanted to get Sloane to Disney World to see "her castle." Consider it done.

Preparing to do whatever I needed to do to make this trip happen, I went into full-on planning mode. While doing some Internet research on loss of a parent, I stumbled into the Jack and Jill Late Stage Cancer Foundation.  Basically, they aid families in making special memories with children 3-18 who have parents with terminal cancer. Within two-weeks I had applied, and received confirmation that we indeed qualified for this special gift.  They asked about what exactly we had in mind and told us what they were capable of helping with.  The foundation and I spent the following weeks hammering out details of the trip all while planning for a second less-invasive brain surgery.

On August 15th, about 3 1/2 weeks prior to our trip, Dow underwent a tumor ablation procedure to relieve his now very apparent symptoms and the hopes of prolonging his life.  Surgery came and went without a hitch and we were back home within 36 hours.  As you can imagine, I was extremely nervous about taking this trip post surgery, but I soldiered on with research and planning.

Vacation planning and exploration has always been my passion.  I've always been extremely informed and well organized when it comes to traveling.  My thoughts are that I don't know if I'll ever get back to these particular places and I don't want to miss anything.  However, this trip would be a much different type of preparation.  Some accommodations were set in stone by the foundation, and I was now planning a trip that revolved around two small children, a technically disabled adult, and on a budget.  I spent evenings in bed reading blogs, tips, ideas- ALL things Disney to "Be Prepared..." (in my best Jeremy Irons-Uncle Scar voice).  As Dow recovered, I booked meals with princesses and whales, character meet and greets, and studied rides, routes, and schedules.

After an extremely exciting call from Tinkerbelle (by way of our adorable pediatrician), it was time to pack our bags and GO! With faith, trust and Pixie Dust (literally, I had a suitcase full of it. I'll explain later.) We hit a few bumps getting to Orlando, a near connection miss in Chicago due to runway delays, and Sloane spiking a fever mid-flight.  Now, being the well-prepared traveler, I packed children's ibuprofen-just not in my carry-on.  However, the tip I can give anyone traveling with children is to apply for the TSA Pre-check program.  This is a life-saver.  No more lines, shoe removal or unpacking bags.  You breeze through the scanners plop your bags in the x-ray machine and your good to go.  With little ones to watch and so many extra carry-on items, this was wonderful.

Before our trip, I spent some time stocking up on Disney trinkets for the kids.  I bundled these up and had them ready to be handed out randomly on the trip.  These were "gifts from Tinkerbelle."  This made the trip magical not only for Sloane, but for us as well.  The excitement would radiate from her when she would see the trail of glitter "Pixie Dust" Tink had left behind with her gift.  These gifts ranged from Minnie PJs, to princess markers, and glow sticks, etc.  This helped to drastically cut down on her need to want everything Disney we saw at the  resort!

Finally, D-day was upon us.  We arrived at the Magic Kingdom about 45 min before the park opened.  Yes, this sounds CRAZY, but it was totally worth getting up early to beat the crowding.  We saw the train arrival of Mickey, Minnie and the gang which really is an exciting way to start the day.  A friend had informed me about a DAS pass before we left town.  This is a Disability Access Service that most of the Orlando theme parks offer.  They are very easily obtained once inside the parks, usually at Guest Services.  I was prepared to show a doctor's note, but most of these parks take you at your word and offer the service for a vast array of disabilities. 3 weeks post brain surgery qualified.  Basically, you show the pass at the attraction's entrance and they either let you in immediately or give you a return time based on the wait.  This was a gift.  While we were visiting during the low season, and we had a few fast passes booked, there were still lines and heat.  Our DAS pass allowed us access to the hottest event in town...the Elsa and Anna meet and greet!  This is typically a constant 2-3 hour wait and does not have a Fast Pass option.  We waltzed right in and schmoozed with the ladies of Arendale, this alone was worth the trip.  By 1pm we had met several royal parties and ridden many Fantasyland rides.  We chose to head back to our hotel before the magic ran out.  That evening, and every evening to follow, we celebrated with a perfect fireworks view from our balcony.               

          

We spent the next 3 days hopping from park to park, picking and choosing attractions.  All of us enjoying every moment.  While there was still much left undone, we hit any and everything a 3 year-old could enjoy.

On the final day of our trip We headed to the Wizarding World of Harry Potter.  Now, Disney World is magical, but the WWoHP is a playground for the 18 and over crowd.  Dow and his mom are huge Harry Potter fans, so seeing their reactions was priceless.  From ButterBeer, to Ollivander's, to architecture, this place is incredible.

3 Broomsticks Tavern WWoHP

Dow and Lesly on the Hogwarts Express

The trip wasn't without hiccups of course, a meltdown here and there- a broken double stroller midway through Sloane and I sharing fevers and body aches...But all in all, we couldn't have asked for a better vacation from reality.  Dow was a complete trooper.  He handled the heat, miles of walking, and crowds as well as anyone.  He couldn't ride the wild rides he once rode, but I think he was truly present and alive.  He even participated in "The Tales with Belle" attraction playing a knight while Sloane played the "saltshaker."

It began as a dire need to grant this visit, to what I started calling the "Tragic Kingdom"-dating myself as a No Doubt fan...but it turned into a celebratory vacation of fun, family memories. It was truly the Magic Kingdom.

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.