My Incandescent Heart

My Funny Valentine

It's been exactly 4 weeks since Dow's light faded. Life completely changed-yet continued nearly unaltered all in that same moment.  There's not a single millisecond that goes by that he's not on my mind one way or another. Initially, I filled my time by focusing on every minutia of making the arrangements . All walks of life turned out to say goodbye. Old friends, new friends, friends from near and far, colleagues, acquaintances, neighbors, teammates, and family. I have been a bit bewildered by the reactions regarding the men of rugby. I've had numerous people mention how surprised they were to see these sweaty, foul-mouthed giants turnout in throngs. Beautifully quaffed, completely endearing, and crumbling, with the loss of a dear mate.  This is the rugby family I've come to know and love. All of them, cut from the same unique cloth as Dow. Intelligent, delightful, incredibly successful and sincere men; who all just happen to like to bash their heads into one another and whose vernacular could make a sailor blush. I can only hope that Dow was proud of the way we chose  to honor him and celebrate his life.

Aside from picking up the pieces to my broken heart, I've also had to mend the tiny bruised and battered heart of our three year-old.  This was by far, the thing I dreaded the most during this process.  From the beginning, we were as honest with Sloane as we could possibly be, in terms of which she understood.  She knew dad "was sick" and that "dad's head had a booboo." Nothing prepared me for that Saturday morning when she came bounding down the stairs like she always had. It took a bit, but she soon asked to go in and see her dad; just as I started fumbling over words- she was quickly distracted and I was given a little more time to choose them carefully.  When she finally found her way back, about an hour later-I still didn't know what to say.  I simply told her that her dad had died.... He is no longer here. His body was very sick and it stopped working. She thought for a moment and said "When he feels better he will come home, and we will see him." I took her into the office that had become his hospital room for the week and showed her the empty bed. I said "We won't see dad anymore, he is gone." "He's in Heaven." (For lack of a better term, to her-this is a concrete place) She said "God will make him feel better, he can walk and he can talk, and then we can see him." I once again reiterated our reality and it finally seemed to sink in. She whimpered and said "I miss my dad." I said, "I miss him too."

We hung out in that room for most of the weekend, repeating this same conversation multiple times.  This has continued, but the frequency has diminished. She seems to be doing well. She started counseling this week and appears to be quite enlightened for her age. There is no right or wrong way to handle something like this. I feel like honesty works well for us. I want the kids to know this was not a choice Dow made-he would have given anything to be with them. I feel it will be even more important to preserve his memory for them. While this is hard for me, I think it's crucial to talk about him, tell his stories, keep photos and his personal belongings around-so they can hopefully get a feel for, and keep their vague memories of their wonderful father.

As the days multiply, the recent flood of horrible images have started to fade. Slowly, Dow's puffy face and altered gaze have left my mind and all I see is that charmingly crooked smile and persuasive blue eyes. These are the memories that paralyze me.  Normalcy may be returning , but this is when I miss him most. Night time is the worst.  The stillness allows me time to reflect and remember so many sleepless nights we spent playing games, watching movies, and scavenging for late-night meals.  The advantage of coupling up on the night shift is that when you have free time, most of the world around you is asleep. Stripping away distractions and daily responsibilities, leaves you with the ability to completely focus on the person in front of you. The loss of this kind of intimacy is indescribable.

Last Valentine's Day, we spent a beautiful evening at the Nelson-Atkins Art Gallery, studying contemporary works of art in which "love" was displayed.  A particular piece struck us both deeply, and I can't help but think of that piece today. Félix González-Torres created a modern instillation that featured two hanging light bulbs; cords intertwined, illuminating the space indistinguishably.  Anyone that houses the piece has been instructed not to change either bulb until both have burned out.  Such a perfect analogy.  As life goes, when two souls find each other, rarely do their spirits exit together. It appears I am the lone flickering bulb in the gallery trying to fill the darkness left behind.

I Am a Widow.

I am a widow.

Dow left my side at 1:57am. We were at home, surrounded by friends and family.  He waited until our sadness passed and chose to leave listening to epic "Dow" stories. 

His liberation is now my suffering. I am so grateful his spirit is finally cancer-free. 

"For never before in story or rhyme, (not even once upon a time) has the world ever known a you my friend, and it never will, not ever again."

P(ractice) E(xit)

S

I thought Saturday morning was it.  Dow woke up early that morning, went to the restroom and returned to bed. He said he could not catch his breathe and was panicking.  We'd been dealing with this for about 10 days, off and on. Last week when he went in for a check up, I addressed it with his doctor and she decided she thought it was probably anxiety driven and we discussed the measures to take when it occurred.  The week went on and Dow steadily declined. Finally Friday was time for his chemo infusion. We went in, they took his vitals, which again seems slightly off-but they went ahead with treatment.  Friday evening the breathing and discomfort continued and I checked for swelling, checked Dow's legs for clots (no swelling, color change, etc.) and he looked good.

Saturday morning was the first time he'd really presented with the tell-tale signs of a Pulmonary Embolism.  After about 45 minutes of not being able to calm him down, I ran to the drugstore and purchased a saturation monitor. This device checks heart rate and the percentage of oxygen flowing throughout the body.  A healthy person's is usually 95-100%.  When I got home, Dow's was 61%.  The fact that he was talking and coherent with this number is an anomaly.  We decided to call an ambulance.

Pulmonary Emboli are blood clots in the lungs which prevent proper blood flow and gas exchange. Left untreated, they are always fatal.  We both also knew that the treatment for these is administered blood thinners-a contraindication for brain tumors. As the risk is very high for these tumors to start uncontrollably bleeding.
Dow remained calm, and asks for a few minutes in our room-he felt he would not be returning home.  This really disturbed me, as anyone who has been around beings approaching the end-they usually know.  Having met they way we did, we spent a lot of time having extremely morbid discussions. And after everything we've gone through now, I knew the plan was for Dow to be made a DNR when the time came.  Luckily, for me-he was able to give me the gift of telling the paramedics that he was not to be intubated and compressed if it came to that himself. I was not going to have to make that call watching him gasp for air. Thank you, love.

Soon enough, the CT came back with a positive PE diagnosis.  After much discussion, we decided to take the risk with Lovonox shots.  Dow was admitted to the ICU for 3 days receiving blood thinners and oxygen therapy.

We were able to return home last night. He is doing great, wearing in home oxygen, and getting lovonox shots twice daily.  The oxygen will probably be temporary. Just until the clot fully resolves-the thinner on the other hand will be indefinitely.
While I was not prepared to lose Dow on Saturday, a massive PE would have been a peaceful and acceptable exit for all of us.  There is still a risk of the medication causing a massive head bleed at any moment-but this risk was worth taking with the alternative.

Sloane and Dow playing "hospital" at home

S

Cancer Happens.

As this year comes to an end, I would like to begin this entry by recognizing and thanking everyone who have lent us so much support over the last 18 months. From everyone who donated to our GoFundMe page (and outside of the GFM site as well),  those who brought meals, gas cards, and donated hotels to those who sent thoughts and well wishes, we thank you.  The Jack and Jill Foundation for a lovely Disney Trip and BeHeadStrong for being so supportive. Tim Kleumpers and the St Thomas Aquinas Rugby Club who always make sure our large yard is maintained, whether it be leaves, snow, or landscaping-thank you.  Brian Ponick and Lindsey King for both making numerous trips to St Louis with us, the moral support is much appreciated. The individuals who have been so good about checking in with us, just knowing we are in people's thoughts reminds us that we are not alone.  And finally thank you to our family.  This has not been an easy journey, but everyone has seamlessly stepped into new roles to turn an unthinkable situation into a tolerable one.

Winter 2014

As is for most families, December has been an extremely busy month in the Richards household. While we managed to squeeze in as many festivities and holiday cheer as we could, it was difficult to stifle the dispirited undertone.  We were met with devastating news at Dow's follow up with his neurosurgeon. Not only is there tumor regrowth, but it has grown back at an alarming pace.  It has spread deeper within the brain and is now in an inoperable location. In just a few short weeks, I have seen Dow's condition steadily deteriorate.  By this, I mean his pre existing symptoms have amplified and he has started having morning nausea due to increased headaches.  His left-sided paresthesia has worsened, as well as his vision.  He struggles with time concept and his level of anxiety and agitation have seemed to increase.  Brain tumors are very similar to Alzheimer's in respect that the patient, sometimes is unaware of a change in physical and/or mental status.  This can be quite challenging and frustrating for family, friends, as well as the patient.  Recognizing the root of the change can be half the battle. This is such a multifactorial disease that any number of symptoms can come, go, or stay without any warning and without any obvious culprit.  Our experience with this has been a moderate one. It's taken a lot of trial and error to figure out how to navigate when these situations arise and it's definitely a work in progress.

Summer 2014

Our treatment options have dwindled down to two. A phase I combo chemo trial or the novacure device in combination with avastin chemo. We have spent the last couple of weeks deciding which route to go. Finally, we have chosen the novacure/avastin treatment. A phase I trial typically is when they are testing medication dosages for toxicity and effectiveness for moving into phase II. At this point in time, I'm not willing to risk Dow's quality of life for such an early stage treatment. The Novacure however, has been FDA approved and has hard data showing that it can slow and reverse tumor growth. It's a crazy looking contraption that attaches electrodes to the head and runs a low level of electrical current through the tumor cells. This prohibits the cells from completing mitosis (cell division) and keeps these cells in a state of flux until they experience cell death.  Wild huh? The device works best if worn nearly 24 hours a day. While Dow is very hesitant to sport the "Professor X" look, he knows at this point in time-it's our best option.

The Sturm und Drang that 2014 has brought us has felt sometimes unbearable. This ebb and flow has helped me learn to temper my emotions and have brought me closer to a sense of acceptance as the new year approaches. The most difficult thing to accept is that this particular disease is very rare, and completely random.  There are no genetic predispositions, you can't "New Year's Resolution" your way out of an "at-risk" behavior. This could be anyone-but it's us. I know our lives will never be the same and I know how heartbreaking it is for Dow to watch himself transform and to see the affect it has on everyone around him. I also know that while many things are different,  his heart and soul are still the same. This is not something any of us chose. Cancer happens.

Spring 2014

Brandt turns ONE!

A year ago today, we welcomed our beautiful Brandt into the world. What was already a bittersweet occasion, quickly turned into the worst moments of my life. Watching Dow, frail and bald from chemo hover over our tiny baby, who inexplicably was clinging to life; was the epitome of my most hellish nightmare. To this day, I cannot even articulate the panic, pain, and fear of that time and thinking about it still takes me to a very dark place. The thought of what life might be like in a year was unfathomable.

Here we are, one year later. Brandt is happy, healthy, and virtually unscathed by his septic stint in the NICU. He is a big boy with an even bigger heart. His sweet demeanor and affinity for snuggling makes every second spent in that NICU worth it.  It has been a LONG year since he joined our brood. Ups, downs, highs, and lows, he's just happy to be along for the ride.  Life today is better than I expected it to be a last November. Our children are thriving and Dow is still with us.  It hasn't been easy, but we are here and we are whole.

The autumn has been full of festivities  and Dow has done so well with all of them. Surgery in August radically improved the quality of life for all of us. Over the last couple weeks, I've noticed Dow slipping back into some previous behavior patterns. This week my fears were confirmed. His MRI revealed that his tumor is growing once again.  This means he is off the current chemo regimen and we are waiting to hear if he qualifies for a second tumor ablation procedure. If so, we will head back to Washington University. If he does not, we will stay and join a combo chemo trial being performed at KU. We are quickly running out of options and the grains of sand continue to fall. We are all struggling with what seems to be the inevitable, but grappling with how to cope with our ever changing existence is more challenging than ever. Dow is still trying to find his niche within the medical community and coming to terms with the fact that he will probably never treat another patient again.  I am trying to figure out how to effectively care for two demanding toddlers and Dow, who is slowly becoming more dependent on my assistance.  We have so much help and support, but this sometimes deepens the guilt of not being able to carry the weight on our own.

While I'd hoped this entry would be a cheerful update and celebration of our one year-old, it has at least served it's purpose as a vehicle of information.  Even with this current set back, I am in a better place than I was a year ago, and for that-I am grateful.

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.