MRI = ?!#$

Mid-June we returned to the Bay Area for the much anticipated MRI – one month post chemo-infusion. Unfortunately the week preceding the trip did not bode well.

In truth, Luke has not really felt up to par since the May 15th infusion. The infused chemo was contained within the tumor and has since been metabolized (I’m told); however, according to the MRI, this treatment did not have any real effect on the tumor; which in fact grew in the month between the procedure and this latest MRI.

Four days before we were headed back to San Francisco Luke laid down around 6:00 pm – not totally unusual in his given condition, though I happened to ask if he was feeling okay?
“Good. In fact great,” he replied.
“Are you tired?” I asked.
“No. I just feel good laying down right now.”
Fair enough, I thought, as I don’t usually question him when he lays down. However, an hour later he came into the kitchen, gripping his knees and looking at me with a foreign face. We both thought he’d had a stroke – the right side of his face had clearly fallen and he couldn’t speak.

Thankfully he rebounded quickly and literally within an hour we were having dinner and talking. UCSF was super responsive with a call back from our oncologist within 10 minutes on a Sunday evening. A steroid was added to his regime. While we’ve more or less been warned that things could change at any minute, neither of us was prepared for him to lay down for a simple nap and wake up so physically compromised.

The next morning he got ready for work. I was not sure that work was the proper course after the episode the night before, but played along until it happened again just before he was about to depart. Again UCSF was quick to respond and more meds were added. Not knowing what to do with him and needing to get EB to summer camp and theoretically myself to work, I decided to bring Luke with me to drop Elsa off.

After dropping Elsa off, as we were driving back towards downtown, he had another seizure. I had preemptively made a doctor’s appointment after the morning’s first seizure, but it wasn’t until 11:00. Since it was 9:00, I thought we’d go ahead and sneak in as walk-in’s to run everything by our local doctor and a second pair of eyes – not wanting to put Luke at any undue risk.

Unfortunately I stepped outside, to call in late to work, when someone came by to call on Luke. I’m sure he couldn’t begin to communicate why we were there given his limited vocabulary after the two recent seizures that morning; thus when I came back he’d already been ushered to the ER. From here they wanted him taken by ambulance to Idaho Falls for an MRI. Given San Francisco’s adamance regarding the upcoming MRI, I refused to do anything until the local doctors could talk to those at UCSF. Also, Luke’s oncologist had already given me instructions that morning on what to do if he had any more seizures… I just wanted some local support to second that. So after a few more seizures, a couple of Adivan, and several hours, I was finally able to bring Luke home.

Tuesday brought a few more seizures and more Adivan (anti-seizure med). The seizures are not particularly gripping, but they do cause the right side of his mouth/face to fall and afterwards his speech is impaired. Wednesday brought further recovery, just in time for Thursday’s planned departure to San Fran.

Because of the recent seizure activity we met with an epilepsy specialist at UCSF upon arrival. Anna, Luke’s sister and an angel, flew in ahead and picked us up with lunch in hand. The appointment ended with a scheduled introduction of a new seizure med, that will be followed with a taper of the old med….Fingers crossed.

This time we stayed in Los Gatos in order to spend some time with my grandparents and feel some of the warmth one associates with California. On Friday, my grandmother came into the city with us for the big appointment. She was incredibly helpful. She insisted on watching EB solo and sending Anna up to join the meeting when the time came. It was invaluable to have Anna there as a sister and another set of family ears in the room. The news was unimaginable.

In addition to the the infused tumor’s continued growth; there are two additional small tumors on the opposite side of the surgical cavity. Surgery is currently off the table.

Devastating news across the board.

There were tears, questions, horror, shock, hugs, disbelief. Then there was just the fact that it was – and that’s what we were sent away with… That and proof that there had been a small stroke in the last few days, though she suspected it had been more recently. The location of the stroke could affect his word finding abilities; which have clearly been crushed by the week’s raucous activity on his brain.

Because of the treatment’s failure, Luke is out of the clinical trial study and we are no longer beholden to scheduled visits to UCSF at this time, though they will continue to be Luke’s main doctors from afar and we talk to them often. The only thing they’re currently offering, given the recent stroke, is CCNU, a chemo pill taken every 6 weeks. A person can only have ~9 months worth in their lifetime. It has a 20% effectiveness rate of slowing tumor growth and comes with 2 days of nausea and two weeks of fatigue with each dose. We’re hesitant to make him feel worse when he already hasn’t felt well – it seems like such a slippery slope.

CCNU is usually paired with Avastin (chemo-drip every 2 weeks), which has a 40% effectiveness rate – together they give a whopping 60% chance of slowing things down. This is a big number in GBM world and the “best” standard option available. However, Avastin comes with a small risk of stroke, which is why it’s not recommended at this time. Most clinical trials also have the caveat of being stroke-free for 6 months. Thus a pretty major road block on the traditional medical front.

We finished a whirlwind collision of sisters (mine & Luke’s) with my grandparents in California over a quick weekend and came home to process and reconfigure. We celebrated Swift’s 2nd birthday. We researched, made phone calls, appointments, processed, lived, loved, cried, held one another, ran together, went for a bike ride – we tried.

IMG_2671The next weekend brought us to a happily pre-planned trip to Montana for the weekend. We met friends for a horse-pack/backpacking trip in the Tobacco Roots. There were a slew of horses, mules and even a mini-pony for the kiddos, as well as a requisite pack of dogs. It was really fun to get up in the high country with good friends for a couple of nights.

Solstice brought us out of the mountains and off to the banks of Divide Creek and Fort Fouts for a celebratory eve. More Missoula friends met us there. We followed with a night at Luke’s folks in Butte and a quick breakfast with my mom before making our way home. Luke drove the entire way – something he couldn’t have done days earlier in California. He read a complicated book to Elsa successfully on Tuesday morning (6/23), the previous Tuesday one of her more complicated ABC books proved challenging enough. Progress, thus hope.

However, the days after we got home didn’t go well. Sitting with the news was too heartbreaking, too depressing. Also, it was time to apply for disability, which felt incredibly hard. Luke could barely communicate. He was disengaged, unmotivated & sad – rightfully so – additionally, he didn’t have the words to talk about it, even if he wanted to… So I put words in his mouth, try to interpret, try to talk and walk through the highly potential and potentially unknown of “this” as carefully and hopefully and realistically and wantonly as possible.

It’s impossible to see Luke so not himself. It’s impossible for Luke not to be able to do things to his full capability. It’s hard. He’s really been a champ – all things considered… He’s been incredibly calm and thankfully willing to try – the majority of the time.

IMG_2833We floated the S. Fork of the Snake. Luke sat in the Father’s Day chair at the back of the boat – taking it all in, but notably not fishing. He rowed a little. He needed specific directions. A woman came on Monday afternoon from Salt Lake. She brought a large suitcase of equipment with her. She walked us through Novocure, further shaved Luke’s head to the scalp and applied the electro magnetic arrays. Additionally, it comes with a 6 lb. backpack with battery power and/or a wall adapter that he’s supposed to be connected to at least 18 hours/day.

IMG_2834He was definitely not looking forward to this treatment, but I think the dread ended up being somewhat worse than the reality – though it’s a real commitment and clearly cumbersome. He spent most of the following week plugged in and rather personally restricted himself to bed and/or the house with a very low level of communication. Last Thursday morning (7/2), after his Wednesday afternoon’s acupuncture, he woke up and said, “I’m back!” I looked at him and thought – he kind of is!  Exhale.    Breathe.         Thank goodness.

Thankfully it’s mostly been an upswing since then – in fits and starts and slowly, but an upswing nonetheless. Over the weekend he seemed to have rebounded somewhat from last week’s low – emotional, physical and phycological. He’s thankfully re-engaging, re-motivating and re-activating. He caught some fish and found an antler shed on our annual 4th of July float on the Teton River – good signs.

Monday he walked a mile in 1/2 hour (an incredibly relaxed pace for Luke). Tuesday he weed-wacked, ran 3 miles (felt slow), stretched (a few minutes), and fish/floated a section of the Teton river with friends. Wednesday was acupuncture.

Communication comes and goes, but sometimes it’s fine and sometimes it’s completely absent… That it can be fine helps me believe that it could be fine again. Overall, I’d say things are improving, but better is becoming more and more relative…

We continue to ride the wave and hope we’re turning the tide. This is incredibly rough stuff. It’s been hard enough being sad, but it’s even harder to see Luke sad. We are working to inflate what we have as big as we can – just like we always have. Nothing is written in stone and miracles happen. We’re hoping our tactics gain purchase against this rotten disease.

We so appreciate everyone’s support – I’m super behind on Thank You’s, but please know that we so appreciate everyone’s efforts on Luke’s behalf and for our family during this crazy time. It’s all been incredibly helpful — Please keep the good vibes coming. There will be an MRI during the first part of August that will likely dictate the next steps.

Until then we hope and assume that him feeling better is another good sign. He’s starting a steroid taper and tapering off of one of the old seizure medicines as well.

We’re looking up at the base of an impossible mountain. Holding hands and putting one foot in front of the other.

This Post Has 4 Comments

  1. Dani

    We’re thinking of your beautiful family daily. We love you so much. Todd and Dani

  2. Sarah Kaiser

    The Kaisers are sending you all of our love and best thoughts. Please know we are happy to have Elsa Bird over to play any day!

  3. Brenda

    Sending so much love your way! And strength and prayers and hugs and anything else that we possibly can – from so far away. Xoxoxo Your story is so tough- we just don’t know what to say. One thing is for certain- you guys are so good at living life fully and filling it up with great adventures. Hugs. Love the neeleys!

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