Category: Luke

Luke Neraas – GBM IV

Home!

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[vc_row][vc_column width=”1/1″][vc_column_text]We spent a few more days after Luke’s release, lodged in a private house between the Mission and Castro districts. Dolores Park was a great, nearby park that provided good fun for the kids – Elsa and our one year old nephew, Renan. Luke was forced to spend the majority of the time laying low and recuperating. We started getting him out with a few small walks around the neighborhood, which was charming with many painted lady, victorian homes. Like many San Franciscan neighborhoods, there were also hills in abundance.

We enjoyed visiting the nearby park and watching it transform into a quilt on Saturday as people came out to enjoy the green lawn with picnics galore. Elsa watched wide-eyed as jugglers, acrobats, tumblers and more practiced their arts in a variety of attire. We also ran across a potentially ‘formal’ meeting of cats & their owners – including a hairless one (cat). Such is city life say these country-bumpkins.

On Sunday a roommate was expected back and we decided to move to hotel digs to keep the family together. It wasn’t easy to find lodging in SF during peak season, but my lovely in-laws accomplished rooms across the hall from one another, medical rates, and deep bathtubs in Japan town for our last few days.

Monday we returned to Golden Gate Park to check out the ocean-side end & drive over its namesake’s bridge – for the sake of it. The beach would have been perfect if not for the beached fishing boat and numerous officials and news anchors milling about, plus the smell of fresh diesel leaking from the vessel. Quite a bummer.

We returned to the east end of the park, but unfortunately missed the botanical gardens again (closed on Monday!). The conservatory looked so much like those on a show Luke once watched about gardening at Kew in England that even I thought it was uncanny. We saw venus fly traps (with dead flies) in the foyer and later a sign declaring that the building was donated by Kew. Ah ha! We enjoyed the beautiful grounds the front of the building instead.

Tuesday was a rough day – potentially from over-doing the previous day and/or from the steady decline of steroids issued to help reduce swelling. We stayed around the J-town neighborhood and found the best local park at the top of a nearby hill and explored the Japanese “box” stores in our zone to admire the culturally different offerings – both plastic and culinary.

Our last day in San Francisco brought us on a late outing to Fisherman’s Warf to take in the aquarium – something Luke wanted to do. The Warf brought a cacophony of languages and accents to our ears as folks lined up to take cable car and bus tours. A lot for anyone to take in, let alone for one recovering from brain surgery. Unfortunately the aquarium was spontaneously closed for an event, but we did get to see some male sea lions playing king of the pier to a cheering crowd and a few big boats before we left the seaside.

We continued on to fill one of Luke’s other requests – China Town. As it was late in the day, we did a drive by of the area. To get to the major one-way street through China Town we fell down the hill two blocks to make our way around. Surprisingly this put us downtown in a canyon of tall buildings. We were awed how close the two were to one another and enjoyed the brief insight into both.

We were fortunate to get a direct flight to Idaho Falls from Oakland on Thursday – a seasonal offering that we were psyched to capitalize on. Anna, Luke’s sister, had stayed to the end and delivered us across the huge Bay Bridge to the airport in a timely matter. We were so thankful for her big-city driving skills and all her help along the way.

My dad picked us up and returned us home where we found that our friends and family had worked tirelessly to fill our wood coffers to the gills – split & stacked, watered our gardens, washed our windows, mopped our floors, stocked our refrigerator, brought us flowers and delivered a delicious chile verde dinner. Thank you all!!!!

By special request, Luke has opted for a quiet weekend of recovery at home after the hub-bub of city life and travel. We spent Friday making upcoming doctor appointments, lining out the future of 6 weeks of radiology in Idaho Falls, and connecting with an oncologist who comes from Huntsman Cancer Center to Jackson twice a month. While we haven’t yet met the new oncologist, we have a good recommendation on him. It also feels good to have a combined team of UCSF & Huntsman oncologist on our side – a regionally successful line-up, we hope.

We look forward to seeing everyone in the coming weeks and will keep you posted as this uncalled for saga continues. Luke is healing and feeling amazingly well. We’ve gone for a few small local hikes with Elsa – she makes a good pace car for Luke and he’s enjoying taking it slow and looking at things in a macro way.

Thank you all for your thoughts, prayers, energy, physical, emotional and financial help. We are so sincerely thankful your support – from the bottom of our hearts to yours. xoxo

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Released

Posted on by cvitucci

photo 2Early on Friday morning Luke was transferred out of the ICU. He was, by all accounts, the first patient to walk out completely unassisted and caring his own flowers. The nurse that watched him for his two nights in the ICU happily introduced Luke to his new nurse staff. Such a star.

Nothing seems to happen overly quickly in the hospital setting, but nonetheless, Luke was released at 12:30 pm that day – just 1.5 days out of brain surgery. We wondered if they jumped the gun a little…, but they claim it’s standard procedure and he was obviously doing well and eager to be free.

We proceeded back to our current digs – one of Luke’s sister’s frisbee connections that’s good fit through the weekend and booked tickets home for next Thursday – wanting to give him some time to recover before flying.

Unfortunately we had a snafu with the timing and distribution of one of his important meds, which caused a very uncomfortable night, but we’re back on track now. Still the swelling is something to contend with and seems to dictate a distinct routine of general bed rest. Plus, I think he’s still in a little bit of twilight-zone timing after the 24 hour-ness of the hospital routine. Medical staff did say that this should be the cumulation of the swelling and it should decrease after day 3 or so.

A day at a time is the main mantra. And to reiterate – Luke is doing really, really well.  He will be “fine” – his own words, his core belief and one that we can only second. Thank you again for all the kind words and support. Much love to all.

The Next Day

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Luke felt quite a bit better the next morning, except for the continual and heightening problem of exhaustion from lack of sleep and the hole in his head due to the recent 5.5 hour surgery. Nevertheless both the surgeons and nurses seemed pleased with his recovery. His speech and motor skills do not seemed to be impaired, though the swelling from surgery has left him looking for help with the occasional name or word – but we are crazy lucky that they are few and far between and that he is doing so well.

As tired as he was, we got the nurses to promise him some quiet time and I went out to the waiting room to give him further space to sleep for a solid couple of hours. At 2:00 they woke him for medicine and a brief walk around the ICU – easy breezy. Later that afternoon the physical therapist came by and they let Luke change into some comfortable street attire. The PT deemed Luke his easiest client all week as Luke walked cleanly and slowly out of the ICU to tour the 8th floor. He preceded to show us how he could balance on each foot and felt nearly “fine”, aside from the head wound, headache and swelling. Amazing. Certainly others in the ICU did not seem so lucky. The bigger problem in Luke’s case will surely be reigning him in and getting him to take it easy in the coming days, weeks and months.

We spent the majority of the afternoon trying to let Luke doze, which is nearly impossible with all the comings and goings of the nurses. We also patiently awaited a visit from the oncologist. There was a little hubbub about a swollen tonsil – for real?!? Later an ear, eyes, nose doctor would perform a scope and deem it “normal”, though potentially it could be checked again in 6 months – the least of our worries, I’m sure.

Finally the oncologist came by after 6:00 pm. Unfortunately we didn’t have the same affinity for her as we had for our surgeon. She mentioned a few trials that Luke may be eligible for in conjunction with the standard treatment of 6 weeks of radiation and 6 months of chemo. He will have a month reprieve between now and the beginning of radiation. Chemo will begin simultaneously, but he will be given another month’s reprieve from everything after radiation treatment. Both of these we’ll be able to do from our home – likely commuting to Idaho Falls for the radiation. The chemo is oral and given over 28 day cycles, with 5 days on and 23 off.  The whole thing should take about 9 months from surgery to complete. There will be MRI’s every 2 months indefinitely. When we get farther out and if things are looking good, this schedule may be relaxed to every 3 months.

Luke asked for some statistics, which in retrospect may have been a bad idea. Of course the doctor clarified the stats with the fact that they included everyone from age 20 to 90, but they were clearly awful. In the next breath she did explain that she has patients that are 2, 5 and 10 years out with clean bills of health. Those people are the ones who are younger, healthy, and had aggressive surgery to remove the tumor – all of which apply to Luke who was laying in bed completely cognizant and “looking like a rose” in her words, a day after surgery.

No doubt he’ll be a statics breaker given that he is the Luke we all know and love – so strong, healthy, loving and positive with a lot to live for, but it’s hard not to consider the stats momentarily – which of course sent me off the deep end for a brief moment. Such a roller coaster. I think I was lulled into a somewhat false sense of security with the great outcome of the surgery and the great condition Luke is currently in – the combination made it easy to push the reality of the diagnosis aside. Luke, himself, is in unbelievable spirits and is crazy calm with whatever happens. He plans to adjust his frame of reference for future goals into a 2 year model vs a 20 year model for the time being. We can only hope those will continue to add up.

Certainly exposure to bizarre medical issues, like the one we’re facing, has the tendency to bring up stories from so many who either are survivors themselves or who have friends and family that are doing well years after exposure to something similar. These offer necessary hope. As the Duke doctor said – it’s all about mind set. Luke is all over it and is looking forward to a chapter of healthy living over the next long haul.

Due to a full house, he had to stay in the ICU again overnight, but the nurses were able to finally give him a little more breathing room to catch up on much needed sleep.

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Donations – Thank you!

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[vc_row][vc_column width=”1/1″][vc_column_text]We are absolutely overwhelmed by the support of all of you – emotional, physical, logistical & financial – you all have our backs and we can’t thank you enough.

It reminds me of our wedding – almost 6 years ago –  when our community joined us and promised to stand up and help us make it, through thick and thin. Now you are and it speaks loads to how wonderful all of you are. We are greatly and eternally appreciative.

One of the many sweet comments we’ve received was from someone who remembers one of Luke’s infamous wedding toasts that resulted in a giant group hug with all of the wedding guests. I think we feel like that right now – the calm center of a ginormous group hug. We are hugging right back and know that this storm shall pass and though weathered, we’ll come out on the other side.

Luke is notorious for taking the long way, no doubt this is just one more detour on the road of life – granted it’s a rough and rocky one that I sincerely wish we could have bypassed or could u-turn out of, but I have to believe we’ll stick it out and get to the highway on the other side. With any luck we’ll be taking that all the way to the end of the line at ripe old ages.

Sincerely,

Claire, Luke & Elsa Bird

xoxo

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Surgery

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Wednesday morning brought us closer yet to the next big step – surgery. I rested with Luke in his room and helped to channel all the love coming our way through the big window towards Luke while he calmly rested in a very focused way – like the athlete he is, before a big game. Turns out hospitals are not very amazing about letting their patients sleep much before something like this, which seems to go against common sense. Sleep deprived as he was, he was prepared.We waited for the appointed hour – sometime between 2 & 3 o’clock. However, at 1:30 pm there was a bustle that the time had come sooner than expected. The nice Irish, soccer-loving, nurse, David reported that in 7 years of working here, he had never seen a resident come to fetch a patient as they did in Luke’s case. The resident reiterated this as he wheeled Luke via wheelchair downstairs to the surgery floor, asking if Luke’s feet were on board and noting that this was also the first time he’d done this.

The pre-op room was bustling. We were secured in a small nook where we were prepped by a very nice nurse who shared a story of her husband’s toothache that ended up being the result of a brain tumor and how everything was fine today. Next we were introduced to the anesthesiologist, her resident, the surgical nurse and a few other team members. Everyone was great. The anesthesiologist gave Luke a pep talk about remembering to breathe, the team effort of the process, how hard it might be and how they were all there to help him with anything he might need.

At 2:30 pm they wheeled him away after a small pause at the “kissing corner” where I sent him off with the obvious. One of the last folks we met before they took him away was a lovely gal from the research division of Dr. Berger’s office. She wanted to save a few select samples of the tumor for future research. Of course Luke agreed, but she wanted to more fully discuss the research, process and his case with me.

We made our way up to the sun-filled surgical waiting area and talked for an hour or more about his case, the nature of brain tumors – each one is like a fingerprint, totally unique. They are working on matching MRI imaging to specific parts of the tumor, i.e. if there is a section of the tumor that might grow faster on a molecular level, might it also be visually different. This would help doctors know more before they go in and/or in lieu of waiting for pathology results. She was an incredible lady who’s mother died of a brain tumor at age 45 – leading her to study medicine.

After our meeting, I was shocked to see how much time had already passed. At 3:55 I got an update from the surgery team that they had completed the mapping stages and were beginning the “surgery” aspect. I headed for Golden Gate Park, as directed by Luke. We both agreed that being in the park would serve us both better than spending the entire time in the waiting room. He promised to imagine me in the Japanese Tea Garden and so I went there as requested. It was a beautiful with so many shades of green. I continued to wander the park, finding the big trees and taking comfort in their magnificence.

The surgical team gave me hourly updates and at 6:15 I got word that they would likely be done in an hour. I eagerly awaited Dr. Berger outside of the surgical area as directed. Around 7:15 pm I got another call that things were taking longer than expected, but that all was okay.

The anesthesiologist came out at some point, saying that all had gone well and that Luke had told them that he was tough and had done a great job. A little before 8:00 pm Dr. Berger appeared. He explained that the tumor’s edges had been distinct and had not infiltrated any of Luke’s language or motor areas. He was able to remove everything he could see and supposed he got 99.99%. Of course there will be cells that have already divided and are not visible, which is where the radiation and chemo come in. However, these have the best chance of being the most effective when there is little left to attack. There was a small issue with Luke’s low heart rate, that when increased effected his blood pressure, but Luke, himself, did a wonderful job. Dr. Berger is an incredible individual and by all accounts a terrific surgeon.

He walked me up to the Neo-ICU where we intercepted Luke being wheeled through the hallway. He asked that I wait a few minutes for them to get him settled and further stabilized. Momentarily he waved me into the ICU to officially see Luke. He was enshrouded in blankets and resembled Mother Theresa. There was a suction draining off excess blood from his head, but all in all, he looked good. He gave me a “Hello honey” and readily remembered my name and was able to talk, though his head was in all kinds of pain, as expected. They had said that the first impression upon waking would be indicative of his recovery and it all promises to go very smoothly.

It took some time to get a handle on the pain, but eventually they were able to decrease it enough to allow him to doze. By midnight we decided he was in good hands and I decided that I was officially tired. Anna & I retired for the evening.

Thank you everyone for your support across the board!  We are so grateful for our community of friends & family – near and far. There is a huge sigh of relief to be on the other side of this first stage – step 1.

xoxo

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Tuesday

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Between 1 hour check-ups by the nurses, janitors, constant blood draws to measure his sodium levels (prevents seizures), and a 4:00 am high-definition, color MRI scan, Luke has gotten little sleep since checking into the hospital yesterday afternoon, but is in fine spirits. All the nurses have been terrific and some swing by just to chat since they heard how nice he is from their fellow crew members – the ‘blue team’ as Elsa refers to them.

He is calm and focused, ready for the surgery ahead. He is assembling his inner strength and channelling the energy we’re all sending his way. You can feel it in his presence. He’s ready and no doubt will be great.

This afternoon they did another calibrating MRI and mapped out Luke’s head with a dozen or so sticky life-saver-esque foamies called fiducials. Later we met with Dr. Perry, the neuropsychologist, who will be attending tomorrow’s surgery. He walked us step-by-step through the entire procedure in a very thoughtful and precise manner. He will be communicating directly with Luke as Dr. Berger maps Luke’s brain with a laser pointer of sorts.

First they will put Luke under in order to cut out a section of his skull. His head will be secured and he will be laying on his right side to maintain the open access to the left side of his brain. Once readied, they will “wake” him up. Dr. Berger will point his laser around the brain area and everyone will be looking for physical reactions to the trigger points of the laser. Luke will be able to respond as to whether a body part is experiencing tingles, numbness, or anything else that they cannot visually see. Then he will be told to count in a slow, controlled, orchestrated way – they practiced – to 20 or 50. They may do this a few times. All the while Dr. Berger is laser pointing and registering the the outcomes.

The next step will be going through a set of simple b/w line drawings – rooster, table, cake, car, etc. They practiced by going through the slides today. Dr. Perry took notes on any pause Luke took, what he specifically said and more. The best was when Luke was shown a picture of a sea lion. Luke responded as much and Dr. Perry prompted him if there might be something else it might be called, Luke offered both Steller Sea Lion and California Sea Lion. Seal is what he was looking for, but Luke informed that in fact the animal pictured there clearly had ears and was a sea lion, not a seal – Dr. Perry promised to look further into it and will likely be adjusting that slide and/or title in the future. Pretty funny.

The last test will be focused on reading and was composed of a handful of simple typed words – no longer than five letters. Dr. Perry stressed that Dr. Berger could be pointing the laser at any possible time, disrupting the thought process. So if he misses one, not to focus on the loss, but simply the next slide.

The mapping process takes 1-2 hours before they even begin to remove the tumor. The anesthesiologist has the power to bring Luke to full conciseness and/or knock him out as needed. Because of the location of Luke’s tumor they may perform most of it while he’s awake, allowing them to continue to map as they extract the walls and edges of the tumor. Apparently the brain itself feels no pain. Dr. Berger is also renowned for his patience, exactness and diligence in removing everything he can from the tumor’s edges – this will be especially important if the tumor’s edges are not distinct. Obviously the more they remove now, the better chances of the chemo/radiation getting the rest.

The entire surgery could last 5 to 6 hours and there will be quite a few people in the room between the neurologists, nurses, machine operators, etc. Once finished they will replace the puzzle piece of his skull, which will apparently readily heal itself and then suture/staple up his scalp. They will give me regular updates and we’ll be able to greet him on the other side. He will spend the first night in the ICU and then move back to a room on the 8th floor for at least another 2 days.

Swelling of the brain from the surgery may affect his language skills and memory, but as the swelling decreases it should come back. If his speech is much worse, they suggest a therapist to speed up the recovery process. The brain is amazing and Luke is one smart cookie. He is ready for the challenge and knows that he will be okay. He is incredibly strong inside and out. Here’s to a good night’s rest in preparation of the big day.

Thank you all for your love and support – it’s amazing and we are entirely grateful.

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UCSF

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Thanks to Siri, we successfully navigated to UCSF, where they readily took us in. Anna took Elsa to the nearby and amazing Golden Gate Park during our appointment. Dr. Berger saw us directly and agreed with the immediacy of the tumor at hand. Because of the location of the 3 cm tumor, in the left frontal lobe, there is risk of impacting Luke’s speech with the removal of the tumor. Speech, intellect, and emotional centers of the brain are all dangerously close to this location.

Because of this they will use brain mapping during surgery. Dr. Berger “has extensive expertise in intraoperative mapping of the brain to identify the sites of motor, sensory, and language function and thereby avoid their involvement or injury during surgery”. This means they will basically remove the tumor while Luke is “awake”. Another neurologist will interact with Luke during the surgery to help identify when they are close to those locations and steer clear of them.

A quick hour later we were able to meet back up with Elsa and Anna and tour the park ourselves, which allowed for some fresh air and leg stretching – always a good thing. The park is absolutely beautiful and full of a variety of attractions – a great kid’s park, an aquarium, museums, greenhouses, tea gardens, etc.

Dr. Berger’s office indicated that they would likely check him in later in the afternoon to secure a bed and get the ball rolling for surgery as soon as it could be scheduled. We spent the majority of the afternoon there and grabbed some lunch before heading back to rest and collect a bag for the hospital check-in. At 3:30 they let us know they were ready and an hour later we checked into his new temporary digs, which offer beautiful views from the 8th floor. The nurse on duty was wonderful, as I imagine they all will be.

An important note is that Luke is feeling good right now – with a 0 pain level.  He is in good spirits, though we are all still reeling with the news, he purports that he will be fine on the other side as well. We all must believe with all our hearts that this will be the case. He is currently scheduled for surgery tomorrow (Wednesday), but we are prepared for anything. One day at a time.

Again, we can’t thank you all for your support and love enough. It means the world and will surely help the outcome. Pictured above is a heart cloud that appeared as I rounded a corner on a quick bike ride I took the afternoon before our departure from home. Clear evidence that we are seeing and feeling the love flowing our way. Thank you!

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The Beginning

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A week ago on Monday, July 21, a sudden, severe and worsening headache drove us to the Teton Valley Health Clinic mid-afternoon. Nearly dismissed as a migraine, a CAT scan was ordered to be certain. It was quickly followed by a MRI. These tests brought up the unbelievable news that there was a mass of some kind in Luke’s head causing the undue pain. We went home to unpack from our recent trip to MT and re-pack for points unknown – Idaho Falls or Salt Lake.Since time was of the essence (they recommended travel by ambulance), we opted to drive ourselves to Idaho Falls and check into the ER there, as ordered. They were expecting us upon arrival and we were well received. They admitted Luke, we briefly met with a surgeon and then we were transferred upstairs for the night. Finally, they were able to stabilize the intense pain in his head.On Tuesday morning I helped cut his curly locks before they shaved his head for a final, calibrating MRI. That afternoon brought him into surgery where they cut a dime-sized hole through his skull, above his left ear, and extracted 8 core sample for biopsy. A painful night followed, as one might expect after a hole has been drilled into your head.Wednesday morning brought full relief and Luke was eager to get home. It would likely be Monday before pathology results were in and while we anticipated the worst there was no reason to dwell on what we didn’t know during this time in limbo – we are cup half full people. With steroids to keep the swelling in his brain down, Luke was feeling A+ and went on to mow and weed-whack our entire property the next day, while I simultaneously unpacked from the MT wedding we’d been at that Saturday and hospital detritus from our stay there, depending on which bag I pulled from.

Thankfully the pathology came back Thursday afternoon, but the news was not good – a primary brain tumor, glioblastoma glioma, stage 4.

I spent most of Friday on the phone identifying our next route of care. Through a variety of recommendations, combined with our western location and the fastest possible availability to see a specialist, we were serindipidiously lead to UC San Francisco and the renowned care of Dr. Mitchel Berger. I can’t thank our PA in Driggs enough for her care, consideration and follow through in helping us narrow down our options and move quickly to establish our next necessary steps.  Thanks to her forethought to include Duke, the nations leading neuro-oncology facility, we received a personal call from the nations neuro-oncology guru, Dr. Friedman. It was totally unexpected and reassuring. It was also like talking to a superstar. He assured us that Dr. Mitch Berger is the best on the west coast and to ignore the statistics. People can beat this and that’s the mind-set you have to have going into it. Perseverance – our Alaskan motto will come in handy. Luke is definitely one to beat the odds. His call helped us finalize our course, in combination with the fact that we were able to secure an 8:30 am appointment for the following Monday – as in 3 days away.

We spent Saturday at home securing the homestead for our imminent departure and packing for an indeterminable time away. Of course we couldn’t have done either without the help of our local friends and family – for all of which we’re thankful and greatly appreciative. We left home on at 5:30 am on Sunday and after a brief stop in IF to pick up a MRI disc, we were on the road to Salt Lake to catch an afternoon flight to San Francisco. Luke’s sister, Anna, sweetly and thankfully flew in ahead of us and shuttled us magically to the hotel. 15 hours of travel and one tired family landed after being blown in a whirlwind to the Pacific coast.

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