I want to preface this by saying that in the beginning I wrote a very short amount of paragraphs about our families journey with glioblastoma. It weighed on me heavily so much that I decided to deep dive into it. I did not give all the hard details to scare anyone or to say this is what it will be like for others. There are people out there thriving and living to the fullest that have glioblastoma. I gave these details because glioblastoma can be so aggressive and so quick like in our journey that we always felt a step behind. I wanted to share details because I would rather someone be able to know some of the obstacles that could arise to create more awareness and educate on the 'what ifs' to allow for better decision making. Please keep that in mind when getting a pretty transparent picture of what our family went through. Godspeed to you and yours.
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Fall and winter of 2021 Ryan had started sleeping a lot, forgetting to show for things planned and was late for work a bunch. I remember thinking maybe he's just in a mid-life crisis?
Saturday, January 15, 2022 Fast forward to my 40th birthday. We rented a cabin on top of a mountain with a few close friends. As soon as he was off shift at the fire department he was headed our way. This is a man who served in Iraq, worked the railroad and knew how to use GPS. He reached out to us saying he couldn't find the place and needed help. I thought maybe the GPS was just routing him to the wrong location. This was just an hour and a half trip near Hot Springs and Marshall North Carolina, close to other locations we had vacationed at previously. With help from his best friend on the phone, he finally made it that afternoon and went straight to our bedroom to rest because of a headache. We ended up going back home that day because of a massive snow storm rolling in and didn't want to chance getting stuck. He flew down the mountain and was super excited about it which was unusual behavior for him because he would normally drive cautiously. That evening he seemed disconnected from me but as a group we had decided to go grab a bite and drinks to celebrate my birthday. He wasn't enjoying being out and just seemed like something was weighing heavily on him so he and another of our friends went back to our house and the girls stayed out to celebrate.
Wednesday, January 19, 2022 He is still having on/off headaches and I finally convinced him to go to the walk-in clinic. They diagnose him with a sinus infection, prescribe him antibiotics and sent him home. I got home from work that evening and noticed he seemed a little disoriented.
Thursday, January 20, 2022 He was one day away from returning to his rotation with the fire department. Meanwhile he is still disoriented and the antibiotics and headache/cold meds are doing nothing for him. I begged him to let me take him to our local hospital and he agreed to go but wanted to go to the VA. We are in prime time COVID pandemic. The ER wouldn't allow me to go in with him. I let the front desk know something is wrong please check him thoroughly. I let them know he was already diagnosed with sinus infection but was not acting like himself, was disoriented and had constant headaches. An hour and half or so later Ryan lets me know that they released him saying it was just a sinus infection. He tested negative for COVID and flu, etc. I asked him to let me take him for another opinion to our local hospital and he said no. He was so worried about going to work. What I didn't know at the time was that his vitals were all over the place. He should've never been released. He should have had further tests done but they were short staffed and only tested for viral infections then released him.
Friday, January 21, 2022 He returns to work that morning. I messaged one of his friends/coworker to let him know what had been going on the last few days, and he refused a third opinion and said he was going to work. The guys were keeping an eye on him and noticed the same mild symptoms. So he worked his 24 hour shift and was called for overtime at another station. I tried to talk him out of it but he was adamant that he just had a cold/sinus infection and he was fine.
Sunday, January 23, 2022 Ryan returns back to his station to begin his normal scheduled shift. I believe he went to rest and when breakfast was ready the guys got him up to eat. He nearly collapsed. They took vitals. His BP and pulse were all over the place. That is when I got the call that they were taking him to the hospital.
This was the day our lives were forever changed. He had a CT and it showed a mass. They were unsure of what it might be and wanted to do surgery for a biopsy and possibly a resection depending on what they saw when they got in there. We were told it could be something minor or it could be a brain tumor of some sort.
Prior to surgery that day we were advised that if they get in there and it's an infection or lymphoma they would clean it up without resection and he would do well with standard treatment for lymphoma. We were also told the worst case could be terminal glioblastoma or the lesser of evils astrocytoma or oligodendroglioma. When he came out of surgery we were told that it was in fact a tumor but they would need to send it off to pathology for further assessment. Mayo Clinic pathology took several weeks to get back to us. By this time we had gotten Ryan to Duke for a second opinion and a second more thorough resection. Mayo Clinic eventually came back with results 'inconclusive'.
March 11, 2022 at 8:21 am one day after our daughters 5th birthday and two days before Ryans 42nd birthday he goes under for his second resection this time with Dr. Allen Friedman at Duke. Initially they didn't think it was terminal. The doctor was unsure of what cancer type it looked like from the naked eye. I remember him telling us before surgery, about 80% of the time he could guess and be right about diagnoses but the best thing to do was to wait on pathology for the facts. In the meantime I began to search for a good naturopathic oncologist with 'outside-the-box' treatment options for him along with traditional medicine therapies. He wanted to do traditional treatment but agreed to let me bring onboard my 'hippy-dippy' stuff as my family always teases me about. If I had it my way we would have uprooted to Mexico, haha.
March 25, 2022 We are back at Duke for path results and a treatment plan. He is officially diagnosed with Primary Glioblastoma IDH Wildtype Unmethylated with a primitive neuro-ectodermal tumor (PNET) component. I know that is a lot to comprehend if not familiar with the disease. He basically has terminal brain cancer but being unmethylated means he should have positive success with the standard of care treatment. So at this point we have hope that he can fight and thrive and still have quality of life and a future. I have been researching all the possibilities since day one of finding out he has a brain tumor and now I am determined to know everything about glioblastoma and make sure that my husband is the 1% that lives 20 years or the 5% that lives 5 years, per the literature out there that I was reading. No question about it, I deep dive into it obsessively with the attitude that we would overcome the odds.
We are told that the standard of care treatment could be successfully executed at our local hospital back home. Standard of care is 6 weeks of radiation (30 treatments) along with Temozolomide, a pill form of chemotherapy. We agreed that being with our kids and our family and friends while he does the standard of care was ideal. The neuro-oncologist would communicate with the local doctors to get them up to speed. Duke also sent some of the tumor off for genetic testing to see what treatment options could best attack the cancer. results can take several weeks, so we wait. Based on the molecular markers of the tumor, doctors could match it with other treatment options if standard of care was unsuccessful. His tumor was so mutated that one doctor explained it to us, it's like trying to look at a maple leaf but the leaf was crumpled and unrecognizable so they couldn't even tell if it was a maple leaf or not. Meaning, the glioblastoma was so mutated that it didn't look like 'classic' glioblastoma.
As a family we decided to be proactive and start him on some supplements while healing from surgery. We eventually got him on supplements under the guidance of a naturopath oncologist that we met with through telehealth visits quarterly.
April 2, 2022 Ryan was having severe pain and pressure so we got him to the ER to get a scan and to see if meds need to be adjusted. We found out he wasn't on enough steroids so they increased the dosage. The goal is to get him stable to start treatment a bit sooner. Which in our minds was what was needed to get the disease under control. That evening his sister stayed with him to give me a break. Things took a turn for the worse. Around midnight he began to vomit, he tried to get up and his knees buckled under him. His blood pressure was severely low. His mental state changed. His scan came back and we were advised the tumor was growing quickly and towards the corpus callosum. I immediately sent the scan to Duke for their opinion. They advised no new growth. It looked like dried/old blood and swelling from not being on enough steroids. Local docs were on the fast track to start his treatment.
April 7, 2022 A new nightmare begins. We got a call saying they could do his first treatment in the next hour. I said well he hasn't eaten food or taken his chemo pill or nausea meds per the morning instructions. It was all so sudden. They told us well, do you want to start treatment or not? Ryan and I looked at each other and he said yes and I said okay, let's do it! He quickly got a bite, took his chemo pill and nausea meds and we were off to his first radiation treatment. We only live about 10 minutes from the doctor's office. We were a little halfway home after treatment and I had to pull over so he could throw up. He was nonstop sick the rest of the day. I questioned everything. Did we start too soon? Was it the chemo? Was it the radiation? I was calling local docs and Duke. From the beginning we were advised that the standard of care is very mild. He may have some nausea but nothing major. It was supposed to be very tolerable and nothing that our local doctors couldn't handle.
April 8, 2022 We got Ryan into neuro oncology early that morning to rehydrate and get him IV nausea meds to help prepare his body better for his next radiation treatment that afternoon. I had to hold him steady as we walked in. He was very disoriented. I asked the nurses and the neuro oncologist if this was normal. We had no idea but something just didn't feel right. Everyone reassured us this can be normal for some and it should calm down as treatments go on. We were advised once you start treatment you don't stop. So we go to the second radiation treatment. He seemed to handle it better this time. When we go home, he eats normally and hangs out in his recliner. I was sure to keep the anti nausea meds in his system.
We were fortunate that the fire station Ryan worked at was just a mile from our home. The guys and gals there reassured us that anytime we needed them do not hesitate to reach out. Later in the evening I had to call for help. Ryan would freeze in place like a statue then would shake then would freeze again. He would stare and be unresponsive then would start trying to change the tv channel again. He got up then fell and I couldn't get him up on my own. The guys from the station got there, got him up and into bed. They evaluated him by checking vitals and asking questions. He acted as normal as possible while his brothers were there of course because he wanted to appear strong and fine. He promised them he would stay in bed and rest. His vitals were a little off but nothing super alarming at the time.
After they left he went back out of bed. I somehow managed to help him back to our den on the other side of our house. He was 6'2" and about 235 lbs and at this point we hadn't needed any equipment for him to get around with. He's back on the couch and having the same unusual symptoms. This time he was sweaty, clammy and had to use the bathroom. I had to run and get tupperware for him to go in because I physically couldn't get him to the bathroom in time. I got a hold of his sister and we got the fire department back to the house to help transport him to the ER. We found out he was seizing really hard. The hospital let him lay there seizing for hours, though he appeared calm he was seizing. They got him into a room and I believe gave him a pain pill for the night for headache and that was all.
April 9, 2022 In the early morning he had a grand mal seizure and was rushed to neuro ICU where he was then intubated and put into a medically induced coma. Thus far this was the most horrific day of our lives. I have never prayed so hard in my life until that day. I knew then what it meant to truly pray to God. His sister and I just sat there and cried and prayed together while we waited for news. We thought this was it, we were going to lose him but he was a fighter, a true warrior.
April 10, 2022 They took him for another scan. The doctors were having talks of a possible biopsy, third resection then changing their minds. It seemed like a cluster. Myself and the family were concerned with all the complications he had been having and questioned what really had caused them. Too many mistakes seemed to be happening all around us. We were told by the local radiologist there was nothing more they could do for him. I told all of them that they would not be treating him any longer for anything major concerning his glioblastoma treatment plan. Between our family and Ryan's work family we got a plan to get him back to Duke where we felt the experts of glioblastoma were.
April 14, 2022 He is stable enough to be transported by ambulance. It's later evening, he is loaded up, I have my car loaded up and we head to Duke. It's about a 4 hour drive. We admit through the ER. I have never experienced an ER of this size and it seemed like pure chaos. Nothing like being on the hospital side of Duke at all. His mental state is fragile. I slept straight up in a chair in a very small room until we waited for transport to our room on the neurosciences floor. He literally thought he was in a war zone from all the commotion in the ER halls. I felt so bad for him.
April 15, 2022 Duke neuro oncology orders an MRI and reviews it with me. While at our local hospital he had seizures so long and so hard for hours that his brain herniated, meaning his brain was trying to push itself up and out of the skull. This caused so much damage on the back of his brain that his vision was severely impaired and his mind jumbled. He didn't know my name but knew I was his wife. He lost the part of brain function that signals facial recognition. He only recognized voices but wasn't always sure who it was, he just knew it was familiar. Duke offered a 3rd resection to relieve pressure and clean up the tumor site. Ryan didn't feel comfortable with another surgery. I was terrified to do any more radiation but we met with Dr. Kirkpatrick at Duke who took the time to talk with us and explain how radiation worked, what went wrong back home and made a promise that he could properly care for Ryan and successfully get him through radiation treatment. The temozolomide was discontinued due to liver damage. The goal at this point was to carefully get him through radiation and try another chemo later. He also had severe sugar spikes and had to be put on insulin shots. This was caused from the long term/high dose steroids given to relieve swelling and pressure on the brain.
April 17, 2022 After much discussion, Ryan decides to do the third resection. He has all his pre-op bloodwork to make sure he is healthy enough for the surgery. His body had other plans. His blood clotting factor came back high so we go back for him to have an ultrasound. The ultrasound showed hypercoagulated blood clots in his legs, arms and under his collarbone in the main artery which means surgery is not safe. He now begins blood thinner to hopefully dissolve the clots. Once this is stable the plan is to begin radiation as surgery is off the table.
April 30, 2022 At this point we are back at the hotel we stayed at when at Duke and Ryan began his first day of radiation treatment with Dr. Kirkpatrick. We decided to live in Durham while he completes treatment. Our parents keep our kids and our family and friends help keep everything running smoothly back home. They would visit some on the weekends in Durham to give me a break and bring the kids to see us. It takes a village and we were blessed with the best village.
Treatment went well like Dr. Kirkpatrick promised. Ryan began to have some improvement with memory and putting his thoughts in order. I did have to seek help on getting him assessed for antidepressants and anxiety meds. He began to have agitation and awful thoughts and some aggressiveness. This was completely out of character for him but can be common with GBM patients due to the affects the cancer and treatments can have on the brain. If this happens to you, seek help. Even if you have to let a nurse know when your loved one is back for treatment etc., find a way. We also took advantage of behavioral and physical therapy while living in Durham. We were educated on a device called Optune but Ryan wanted to try chemo first once we were home then try Optune if it didn't work. Optune is a device worn on the scalp. Arrays that look like giant band aids hooked to a pack that can be carried around. The idea is that it disrupts the cancer cells from dividing and growing by delivering low intensity electric fields. The hope is to cause cell death, killing off tumors and/or preventing regrowth. We did not start Optune until September.
Duke has an awesome neuro ophthalmology department that was able to check the damage done in Ryans eyes from all the trauma. They weren't able to fix the vision loss but they were able to make some suggestions on his glasses prescription and supplements that might help. Everything was a blur for him from the seizures. Ryan wanted to do the least invasive treatment options moving forward.
June 8, 2022 Radiation is complete and he got to ring that bell. Our family was so grateful that Dr. Kirkpatrick was able to help him complete the treatment safely and successfully.
June 10, 2022 We are all packed up and ready to head home after a few more appointments. We got home that evening to get back to our new normal. We hope and pray that from here on out we have the best doctors onboard to continue an integrative approach to giving Ryan as much time as possible with us and with quality of life. We continued to have Duke neuro oncology lead the way with Ryans treatment plan and found different local facilities to help administrate this plan.
We spent lots of time in our backyard. He loved sitting on our back deck that his firefighter buds and stepdad rebuilt. The kids would play and the pup would run. We took a few small trips when able. We shuffled to weekly doctor appointments, adjusted meds, weaned off some meds and had periodic scans. It was a juggling act to keep Ryan and his body in a good place and 'stable' but we did it. It was a great summer overall. We spent time with family and friends and just soaked up all the moments.
July 21, 2022 Ryan began an alternative chemo option called Lomustine a couple weeks back. We had to monitor his platelets as they can drop and if it drops too low they will stop treatment. We chose to add in papaya leaf extract to help with his platelets so he can hopefully continue with chemo. In August he began to have some physical effects from the chemo. More noticeably he had left side weakness but also some overall body weakness. We checked into it. It can be side effects from chemo and/or side effects from the cancer itself and necrosis. It always seemed that it could be a million different causes and never easy to pinpoint. We just always tried to find the sweet spot of keeping him stable.
August 4, 2022 He's four weeks into Lomustine. Last 3 days have been hard. Body weakness, falling (which is new) since April when he had initial seizures. confusion and paranoia got worse like it did months ago. Took him for CT, showed swelling, tumor progression, small bleed. They want to start Avastin. They said Avastin and I cried. I cried because so many others I read about in my support group shared stories of going on Avastin to extend the quality of life when things are bleak. It seemed in a lot of cases like the final option offered toward the end. He was also on blood thinner so this creates a double-edged sword. He could throw a clot or bleed out. We don't start avastin immediately. Full disclosure there are 'thrivers' on Avastin long term and it has been successful for many. I don't want to sound all doom and gloom but was being honest with myself based on our journey compared to others that had similar stories.
August 25, 2022 Ryan had his follow up MRI to see if the chemo is working. Lumostine had done nothing. Tumor progression. They are moving to Avastin and Ryan is going to try Optune. He was so tired. He had so much body weakness, brain swelling, frequent headaches again. We still had our off-label protocol onboard and would adjust the repurposed meds with guidance from our integrative oncologist. We didn't know what else to do. If Avastin got the disease under control they would try to add Carboplatin in October at the next MRI. I felt like I always had a backup plan but I was running out of options. They said his gbm is so aggressive and the genetics of it looked like a mutated combo of GBM and PNET which we had been told weeks earlier. His markers on his Caris report didn't match with a single treatment option. I just thought, how does it not match any of the possible medications out there?
September 22, 2022 We finally get to start him on Optune. He wanted to hold off when it was first presented as an option but at this point it seemed we were grasping for anything they would offer to fight the disease. We also added in supplements to try to help his vision or at least prevent further damage. He had a jumbo pill case that I organized everything in. I've never seen someone take so many things. It goes back to that saying 'throw the kitchen sink at it', meaning everything and anything. The protocol he was on attempted to attack the tumor in four different ways. He was on medication and supplements to treat it as if it was a fungal, bacterial, viral and/or parasitic disease. So lots of pills daily. He was such a trooper with it all. Sometimes he would stub up and tell me no with medication or taking a shower. It was frustrating and funny at the same time. I would call his mom, dad or sister to help me persuade him to do the things he needed to.
October 8, 2022 8 weeks prior we had been told that the tumor was progressing from the right frontal lobe to the right temporal lobe. He was using and walker and wheelchair due to seizures. Thanks to Avastin he had become more stable. We were so happy for him to get some quality of life back. We also added a special breathing treatment with perillyl alcohol. It is supposed to cross the blood brain barrier and kill cancer cells directly. He had been very dedicated to using Optune. The Avastin made him sleep more and he was having some confusion but more mobile. In October we also got him down to 2mg of steroid which is really good for a gbm patient. Steroids keep the swelling on the brain down but wreck havoc on the rest of the body, causing severe weight gain and 'moon face' to patients.
Dec 8, 2022 We are back at Duke for follow ups. His neuro ophthalmologist said his optic nerve was thinning at an accelerated rate. It was caused by either damage from radiation or cancer spreading through the optic nerve. GBM was crushing our spirits again. They scheduled him for an MRI of the optic nerve to confirm. We then go for the follow up with neuro oncology. We got wonderful news that he is "stable"! No new growth was detected and his inflammation went down even more around the tumor sight. Next step was to come up with a game plan to get him off one of three anti-seizure meds he was on. It was causing too much sedation and he wasn't himself. We were thrilled. It was a breath of fresh air. We had such a good night hanging out at the hotel. He seemed so happy and more like himself. Now the focus was to get his eyes working better.
That night after the eye MRI I'm laying there and go review the brain MRI and low and behold there's a new spot on his lower temporal lobe. It says it in the notes with measurements and is confirmed again in the eye MRI. I feel like our neuro oncologist (NO) had given up on him and most definitely wasn't honest about what he saw. There were no other treatment recommendations besides avastin. We deserved transparency so as a family we could better decide next steps. At this point that NO was moving to another department so Ryan would have the NO that we had requested from the beginning. It took over a week for me to get a response from the previous NO about missing the new tumor on the scan. He apologized to me over the phone for overlooking it. I just couldn't believe I found this on my own, me, with no medical background had to address the new tumor site with the doctor. It blew my mind.
January 31, 2023 Ryan had his one year anniversary since his first resection on the 23rd. Things had slowed down. It was like we were on this slow moving coaster waiting for the next twists and turns. We had enjoyable moments but there was always a fear in the back of our minds of what was around the corner. We found a trial and were told he would qualify so I began the paperwork to sign him up and we would be off to Virginia for the trial. During the trial he couldn't maintain the repurposed meds he was on he was going to be allowed to continue the Avastin which was his body's security blanket. Having new hopes of being offered a trial we then received a call to let us know that he would have to discontinue the Avastin. It really crushed us. We decided against the trial as Avastin was his lifeline. More harm could be done going off of it so the trial was out. Then there was talk of offering him targeted high dose radiation. They don't call gbm a beast for no reason.
February 27, 2023 We are at Duke again. He had a 3D MRI/CT then a one time high dose targeted radiation treatment on the new tumor site. This caused his mind to completely shut down. He was so confused. He didn't know where he was or that we had just eaten dinner. I got him another meal. Nothing too heavy so he wouldn't be miserable but he again asked when dinner was after eating the second meal. The next day before we headed home I spoke with his doctors. They advised there wasn't much they could do about it. They said his symptoms could be from another seizure but if his vitals were ok we could go home.
April 3, 2023 He was sleeping a ton and eating like a bird. Early on I had prepared our bedroom for him to be able to stay home through this journey. We had an adjustable bed. Ryan's parents added a walk in shower on our side of the house and added safety handles to it and beside the toilet. I'm so thankful we were able to prepare for his needs and keep him home with family. It's what he wanted so I was going to make it happen. Death used to scare me so much but it comforted me knowing he would be at home in his own bed surrounded by so much love.
In early April, we could tell that the Avastin was no longer keeping the disease/symptoms at bay. He began having more weakness each day, nose bleeds and vitals were swinging all over. He was clammy and bug eyed.
It was late April, his favorite spot was his recliner. He would rest there with his eyes closed most of the time. He'd listen to all of us around him, the TV and enjoyed his music.
I remember thinking, there has got to be an outside-the-box alternative. I started searching. I found a clinic that was willing to try to do some alternative therapy options. I got him there but his poor veins were so worn she couldn't even get an IV in. She tried and tried and tried. He sat there calm and just took it. He was indeed a warrior. It was so late in the fight that we couldn't do the treatment. We returned home and continued with repurposed meds and what we already were doing.
May 13, 2023 Ryan started to decline some. We had another MRI at Duke. We were advised that it was 'stable'. I look at it and see cancer all over. I began reading up on how to prepare myself mentally for the inevitable.
June 5, 2023 Ryan took a turn for the worst in that last 24 hours. He was extremely off balance and spaced out with very unusual behavior. I was worried he was having a stroke so I took him to our local hospital for a CT scan. There were no signs of a new stroke but we were given the devastating news that it was more tumor progression. The MRI then confirmed glioblastoma had gone from his right frontal lobe to the right temporal lobe and now had traveled its dreadful little 'tentacles' down deeper into his basal ganglia. He had lost left side mobility. We are advised it is time to get hospice onboard. In the beginning of this journey I prayed for a long term quality of life for him. With glioblastoma I was thinking give him 5-10 years please. I would now begin to pray for him to have a peaceful transition.
June 16, 2023 I am told he now had diabetes insipidus caused from damage to the hypothalamus and/or pituitary gland. Just confirming the cancer was spreading more. He began morphine and liquid ativan to keep stay comfortable. A couple of days later, his breathing began to slow. We are spoon feeding him applesauce with just crushed supplements/meds that the integrative oncologist thought were important and we were feeding broth and soup. Soon we weren't even able to give him that and in the coming days he would begin to have a soft rattle, no longer speak or open his eyes. I was overjoyed if he would squeeze my hand.
June 20, 2023 There was pink sediment in his foley tube. I had to ask what this was. I was told it was his kidneys shutting down. The rattle was still there but not too loud at this time.
June 21, 2023 Ryan gained his wings at 8:23am. The last five hours leading up to his final breath was anything but peaceful. The hospice nurse tried to comfort us by saying that he had already left his body and felt no pain. It did not ease my mind. It was the worst thing I had ever experienced in my life. Five hours of body convulsions and death rattle. I wouldn't wish this on my worst enemy.
He fought for 16 long months. He showed courage and strength each step of the way. If I had to, I would be by his side and do it all over again.
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If you were able to read this, I want to thank you for allowing me to share our family's story and Ryan's journey with glioblastoma. I know it is not easy to read, I cried while writing it. I hope that our journey can somehow guide others in making better decisions and prevent them from some of the setbacks we experienced. In our case and a lot of cases this disease happens so quickly you have to make quick decisions. I hope that I can help someone else feel more confident in whatever choices they make in their journey and have less guilt when the unexpected arises from those choices. It has taken me a long time to work through the emotions of guilt and the 'what ifs'. I am still working through it today. Do not hesitate to reach out and if I can help others in their journey it would be an honor to do so.
There are a lot of great resources out there and support. I am here to help.
Submitted by LeAnn