Help Alex Beat Brain Cancer- Round 2!

I was really starting to think that my days of being the family cancer spokesperson were behind me, but sadly, cancer has other plans.

Almost 5 years ago, as many of you can surely recall, I posted the gut-wrenching news that my younger brother, then 28 was diagnosed with brain cancer. Through love, prayers, the great support of his family and friends, talented doctors and modern medicine, Alex was able to be under close surveillance and ultimately became tumor-free, such a blessing.

Perhaps with a false sense of this new-found freedom from the evil that is cancer, we carried on. Routine scans would happen about every three months, and getting good news was commonplace...until it wasn't. I suppose we knew deep down this brain cancer could rear its ugly head once more, but I liked believing it was gone for good. It felt like it was a mission accomplished, crossed off the list of ugly life things to deal with, a hurdle jumped never to be an obstacle again. But alas, here I am, once again trying to find the words to tell all of you, the people who have shown they cared and have been supportive from 2018 on, through the highs and lows, that it's back.

Now to get you up to speed from what has been the whirlwind of the last few weeks...

Here goes. Like the good patient he is, Alex was getting his routine scans roughly every three months under the care of his neuro-oncologist, Dr. Khan at Aurora St. Luke's in Milwaukee. We have grown to have a great relationship with Dr. Khan and he has truly been a blessing to our family. They were considering spacing Alex's MRI's out longer than 3 months but had their eye on a spot on the scan from October, but it was hard to tell if it was tissue necrosis from the round of radiation or perhaps something to be more concerned about. So they continued with the three-month scan pattern and Alex had another MRI in January, just last month. They were not satisfied with what they saw on this scan and were concerned, so they scheduled additional CT imaging to be completed.

It was when the additional imaging came back that we knew something was up and maybe we needed to be on guard for what may lie ahead. Dr. Khan said he was going to share Alex's case once again at the weekly tumor board conference as he had in 2018 for a group of neuro specialists to take a comprehensive look at what was going on. Following that conference, Dr. Khan referred Alex to see Dr. Swanson, a neurosurgeon at St. Luke's.

Last week Wednesday, we met with Dr. Swanson at St. Luke's. He pulled up imaging and we reviewed the scans as he pointed out the areas of concern and that we needed to figure out what this tumor was to plot the appropriate course of action. It was then that Dr. Swanson shared confidently and humbly that he would be more than willing to do a biopsy of this tumor, but even better would be to remove it. He continued saying that it's located in the insular region of the brain a very difficult and complex area to operate on and he (along with other neurosurgeons at St. Luke's) would not be comfortable operating on this tumor, but he knows someone that would be; Dr. Mustafa Baskaya at UW Health in Madison.

Dr. Swanson studied under Dr. Baskaya and knows that not only has he done this type of brain tumor surgery, he specializes in it. He was confident that Dr. Baskaya would take Alex on as a patient and could resect most if not all of this new tumor. He spoke incredibly highly of Dr. Baskaya, saying in his profession they all know who they would go to for their care if they were the patient. He said without a doubt he would go to Dr. Baskaya if he were in Alex's shoes. He closed the visit by saying, he would personally email Dr. Baskaya and his team to make the referral and anticipated them reaching out to us soon. And if after we met Dr. Baskaya, if we decided that wasn't the best option, we could always have Dr. Swanson do the biopsy and go from there, but the best outcome lies in tumor resection.

Later that day, during a well-deserved nap, Alex missed a call from UW Health. It was Dr. Baskaya's team reaching out to get him on the schedule. By the next morning, Alex was scheduled for a consult with Dr. Baskaya at 1 pm on Monday 2/6, and Dr. Baskaya would be able to dedicate an hour to him in between his OR and clinic time. Alex took the appointment.

Having not spent a lot of time in Madison, aside from a state swim meet or a fun weekend or two back in college, I navigated my way to meet my mom and Alex at the UW Health Neurosurgery clinic on Monday afternoon. Within minutes, we were meeting with Letty, the NP who works with Dr. Baskaya and then Dr. Baskaya himself. Now I have never met this man, but my internet stalking skills have afforded me the privilege to learn so much about him. I read every single one of his google and Facebook reviews, and every single one was 5 stars. I watched youtube videos of news clips where former patients have named their babies after him. I watched an entire hour-long international lecture about operating on "inoperable" brain tumors. I hardly understood what I was watching, but I was determined to see if all of the good reviews I read were right. Now I only met the man in life for all of 15 minutes, but I can tell you that I get it.

Dr. Baskaya carried himself with confidence, but not in the cocky arrogant stereotypical surgeon way. More in the way that he knows what a blessing is to be so gifted and what great power and responsibility that yields to do good with such talent. He showed us scans, talked to us about the areas of concern, and spoke about his approach. He said he was disappointed we didn't come to him 5 years ago. Trust me, I am too, but we didn't know and he was glad we're here now. He said he is one of about a dozen surgeons in the entire world who routinely and safely perform brain surgeries on these exact tumors. He has done over 150 of them, all with success. He told us that his goal is maximal safe resection, that he will try to get 80% of the tumor out and if that works, then, while still in surgery, try for 90%, 95%, 100%, sometimes even more than 100%, to create the best outcome possible. He shared there are ways to tell if something he is cutting into could be unsafe or cause permanent damage or paralysis and that his goal is to take as much tumor out as he can while doing so safely. So after 15 minutes, we had a plan. We shared all of the wonderful things we had heard about him and he thanked us, humbly clasping his hands together, pointing to the ceiling and stating he's "guided by Him from above." We knew we had made the right choice.

Within 15 minutes, we had a surgery date (2/15/23), orders were placed for lab work and by our luck they were able to get Alex in for a same-day MRI. Now, if you've ever needed an MRI, you'd know that it's near impossible to get one same day, but everything was aligning for Alex.

So if you've made it this far, or if you took my previously mentioned time-saving tip and skipped to this paragraph, this is where we stand: Alex will undergo a lengthy (6+) hour craniotomy on Wednesday, February 15th at UW Health University Hospital in Madison. Dr. Baskaya (our new fave person) will make a large incision along Alex's hairline to gain access to begin carving away and carving away at this no-good, very bad new tumor. With surgeries of this nature, there is a laundry list of inherent risks, but Dr. Baskaya is confident in this case the reward far outweighs the risk. Following the operation, Alex will spend at least one night in the ICU and then be moved to a general floor of the hospital for another 2-3 nights. Once the tumor is resected, it can be sent off to be biopsied to determine the grade. Typically when these tumors return, it's not uncommon for them to go up a grade, making them even more dangerous; all the more reason to take them out! Now, the typical course of treatment following tumor resection is to follow up with radiation. If you recall, Alex already underwent a full course of radiation the last time around, and there is a lifetime limit on how much radiation treatment a person can receive. However, (and I feel like I sound like I'm making this up because what are the odds) we were told at UW Health they invented using pulsed reduced-dose radiation therapy for patients who have a recurrent brain tumor. Needless to say, I think we're in good hands.

Beyond the events of next week, I don't know what to expect. A month ago, I wouldn't have expected any of this. I'm confident we have a great plan, but could still use your help. Prayers, well-wishes, good thoughts, and positive vibes all go a very very long way and the support of all of you means the world to Alex and our family. However, this wouldn't be a fundraising page if Alex couldn't also benefit from your helpful funds and the sharing power of social media. Trust me, I hate asking. I cringed at the thought of even creating another Go Fund Me page again, I thought my work here was done. I was cool with only crowd-sourcing funds once in my life, but cancer is evil and cancer is expensive. Hell, who are we kidding, even eggs are pricey these days. At the current moment, Alex is insured, but has deductibles to meet and medical debt that he's already collected since his initial diagnosis after years of routine MRI's, anti-seizure meds, etc. With the news of this new tumor, he had to quit his new job he was so excited about and move back home with my mom...just what every 32-year-old man wants to do. Lucky for Alex though, we have a saint of a mother and she's sure to take great care of him. This upcoming surgery, multiple nights in the hospital, and who knows how many trips to Madison in our future, if there's anything you can do to help, know it would be endlessly appreciated. Thank you all for your support over the last nearly 5 years and onward as we begin this new quest. We'll keep looking forward as that is the only direction we're headed and I'll do my best to update you along the way. From the bottom of my heart, thank you.