Shannon — friendupdatesmt.com

Previous and Ongoing Updates

September 9th: Hi All, here's another update on Shannon. It's getting harder to have much positive to say. Shannon's platelets were still low today, though slightly better than last week. So we are still on hold for both her weekly Avastin and 6 week chemo. The results of last week's MRI aren't great either. The tumor continues to grow. The results and all the details have been sent to Seattle for her doctor and the surgeon there to review. We hope to hear from them soon. Could mean another surgery or a change in chemo. She's not been feeling very good either. We are gonna try a change in dose for one of her other meds to see if that helps her get more rest. She's having a tough time getting around and with her dexterity. So, she's having trouble communicating both verbally and with text so you won't hear a lot from her. Keep her in your thoughts and prayers!

August 27th: Hi, it's James writing another update for Shannon. I am going to try to do updates a little more frequently. She is still not feeling very well and is having difficulty responding to texts and calls. She appreciates the concern but can't easily respond. She has really low energy and trouble typing. She was supposed to get an Avastin treatment yesterday but it's been delayed 8 days since her platelets were low. That's typical but not a great side effect of her chemo. They've started some meds to help her energy levels so hopefully that starts working soon! I'll try to get another update out in a couple weeks!

August 13th: From James:

Hi All, this is James and I’m writing an update for Shannon again. She hasn’t been feeling up to it so it’s pretty overdue! Shannon is still on her biweekly Avastin treatments and started the Lomustine chemo about a week ago. The two will hopefully work together to make her feel better. The Lomustine will be every 6 weeks. She hasn’t felt that well the last 3 or 4 weeks, mostly feeling different combinations of weak, tired, nausea, or headache. We've been busy getting some trips in she has wanted to do. We went to Atlanta so she could go to three Braves games. You know she loved that! A few weeks ago she got to travel to Wibaux to visit a limited number of family and friends. And last weekend, we were able to attend one of her favorite annual events, RockinTheRivers! She mostly hung out in the camper but did get to see some of her favorite friends and listen to a number of bands. She has really appreciated all the love and support from everyone and it’s very helpful and she thanks you!

June 29th: From James:

It was a busy week ending with a four-day trip to Seattle for an MRI and a meeting with the surgeon and the oncologist. We drove over on Tuesday. Wednesday morning was the MRI and a meeting with the surgeon, Dr Emerson. The news was mixed. He said one area of the tumor seemed a little larger and one area seemed a little better. He seemed generally pleased with the MRI. Thursday we didn’t have anything scheduled so went to the Pike Place Public Market and looked around a little bit. It was packed so we didn’t stay long. Friday we met with the oncologist, Dr Venur. He also seemed happy with the current status of the MRI. We believes we can move forward with additional treatment so Shannon will start a Lomustine chemotherapy in a few weeks in addition to the Avastin transfusions she is currently on. This should all help slow the tumor and make her feel better. Let’s hope it works! We drove all the way home Friday after the appointment. Shannon is feeling pretty wiped out so I’m taking care of this update!

May 28th: I just finished up another infusion round. The Dr said all my lab work looks good so that is a good sign that we can keep moving forward. The treatments will continue to be every 2 weeks. They make me very tired for a few days but other than that the side effects are tolerable. Hopefully everything keeps going positively. One day at a time!

May 13th: I’m doing my best to keep these updates going, I sometimes I just need a little push. Today I had my second infusion. They take about half the day and usually drain my energy; I’m hoping that part will get better. I am getting them every two weeks and thankfully can do them at the new Sletten Cancer Institute right here in Helena. The past few weeks have been going fairly well, I’m feeling better each week so hopefully that is a continued trend. I am starting to taper down the steroids; I’d really like to be completely off of them soon! I’m so thankful for this beautiful weather, it definitely helps keep me in a better mood. Thank you to everyone for the continued support; I can’t begin to explain how much it means to us!

May 1st: It seems like it has been a lot longer than three and half weeks since the last update. I’ve been slowly feeling a bit better but the process hasn’t been as easy as last time. It was a long day yesterday but we finally got through the first infusion. We had to go back to the hospital a second time but we were able to get the first treatment completed. We will now go back every two weeks for a new infusion. I’m hoping to start gaining some more use of my right hand so I can communicate better but I’m happy to be feeling better each day! I’ll be completing Avastin treatments every two weeks. I’m hoping to start weaning off the steroids soon; I do not like how they make me feel at all. Crossing our fingers that this treatment will help me start feeling better. Thank you to everyone for all the love and support!

April 6th: It’s hard to believe 2 weeks have gone by already since the last update. Those two weeks have been very long and full of every emotion possible. It took us a couple days to make the drive home from Seattle; thankfully the weather cooperated. Once we were home, the anesthesia started to wear off completely and the healing process began. I spend a lot of time in bed sleeping and haven’t been able to respond to messages so I apologize. I think I spent four straight days in bed and then spent 36 hours awake. I’m hoping to get back on a normal schedule soon. I had the staples removed on Friday. There were 20 of them so this scar is pretty gruesome. We meet with Dr. Venur again on Tuesday and will hopefully be able to make a plan for next steps with treatment. We greatly appreciate everyone’s continued support.

March 27th: Shannon is doing ok. She was released from the hospital on Sunday afternoon and we made it to Couer d'Alene, ID that night. Then home on Monday afternoon. She's been spending most of the last two days napping. She's not feeling great but they said she'd probably feel a little worse before she felt better, as all the surgery drugs wear off. We're just taking it day by day for now. She's not really ready to be answering texts on her phone yet but is thankful for all the thoughts and prayers!

March 24th and 25th: Shannon was released Sunday afternoon and we immediately hit the road and made it to Coeur d'Alene, ID on the way home. About half way. We should make it home this afternoon sometime. She's traveling well and I'm mostly trying not to hit bumps! Probably some slick roads in MT so we're not gonna be rushing!

Saturday March 23rd: She's doing well this Saturday morning! They woke her up every hour last night it seems. This morning she got up and did a little walking, and she's been able to keep down food. At this rate, we may be released by tomorrow morning they say. Hard to believe considering what the surgery entailed! Her biggest complaint lately is that her head hurts. I can only imagine! The incision this time is a couple inches longer, probably 6 or 7 inches. She's getting a good nap right now so that should help. Thank you all again for the love and support!

Friday March 22nd: Second update: I've finally gotten to see her. She looks pretty good and is definitely better than after the surgery last time! She seems to have good feeling in her right side so there doesn't appear to have been any harm there. The news on the tumor is mixed. There is definitely some tumor that's come back which is a bad sign, but there was also some scarring from the radiation. The doctor got out all he could up to the point where it was starting to impact her leg and risky to do more. Sounds like pathology results are a couple weeks away to have a full understanding of where we are. Thank you for all the well wishes! Just a reminder that she doesn't have her phone and probably won't be on it for at least a few days!

First update: Shannon was taken into surgery around 830 Montana time to remove what we think is the tumor again. It is supposed to take at least seven hours, and then there is more waiting until she wakes up. The doctors have us believing that the MRI is showing that the tumor is back, but there's a slim chance it could be basically scarring from the radiation that happened previously. We think she is in good hands here. They gave her Gleolan, something that will make the cancer cells glow pink in the dark. That is supposed to help them get as much as possible. So the surgery is in darkness and then, She will have to sit in the dark for about 48 hours afterwards because she can get sunburned just from a light on in the room. Apparently that's a side effect. I got a quick call from the surgery room a couple hours in and they said all is going well. I'll give another update after the surgery is over. Thanks for all the support, well wishes, and prayers!

-James

Friday March 15th: We will be headed back to Seattle on Wednesday for some pre operative appointments and another brain surgery on Friday. Unfortunately, the doctors won’t know if the swelling is from radiation necrosis or if the tumor has come back until they open up my skull again. I feel a little less nervous this time since I know more of what to expect. I’m ready to get the surgery over with so I can start healing; I have a lot of stuff left to do in this life!

James will take over updates. Last time I couldn't look at my phone for days so I'm expecting the same this time around.

Again, we sure appreciate everyone’s support ❤️

Friday March 1st: We are back from Seattle. It was a very quick , less than 24 hr trip. I’d planned to go by myself but since I didn’t feel good all week James flew with me. It’s very frustrating that Alaska Airlines can charge $850 for a direct flight that takes less than 2 hours ugh! I’m thankful he was with me since the news wasn’t great.

The perfusion scans show new growth where the previous tumor was removed. There’s a slight chance the new growth is radiation necrosis but the dr didn’t seem like that was likely. It’s more likely that the chemo isn’t working on my tumor and that I have been receiving the placebo in the trial instead of the vaccine. Dr. Venur will meet with the Tumor Board this week to discuss next steps. I’m fortunate to be doctoring at such a wonderful hospital. I feel like I’m getting the best treatment options and also kind and compassionate care.

We’ll have a videoconference appointment with him on Friday to make a plan for the next steps. Even though this was a frustrating appointment, I’m doing my best to try to stay positive. We appreciate all the positive support from everyone.

Monday February 19th: As of my last update, we weren’t supposed to have to venture back to Seattle until March 28th. Unfortunately, I ended up in the ER last Monday, February 5th with a seizure. It was a small seizure caused by swelling but we had to make sure we followed protocol with the clinical trial so it was a very long day! I was put on a higher dose of the steroid to combat swelling, which was causing the seizures. I have since started tapering down the steroids but I do have to make another trip to Seattle for some special scans on February 28th. The doctors said one of three things is causing the swelling/seizures. It could be that the swelling is still a result of the radiation; we’re still in that timeframe. The swelling could also be caused by the trial vaccine. The other possibility, although not what we want to be happening, is that the tumor has grown back. We are keeping a positive outlook and looking forward to good news after the scans at the end of February. Thank you for all the positive thoughts and prayers!

Friday February 3rd: I received the fourth vaccine today and we hit the road to hopefully beat the storms home. We wont need to go back to Seattle for 8 weeks now that I’m considered “primed” with the vaccine. We tried to wean off the steroids again but I ended up weak with headaches so I evidently still have swelling. I don’t like how the steroids make me feel but the headaches and weakness are worse. I’ll start the next round of chemo on Sunday. It will be a higher dose for 5 days.

I did have another challenge last week. My annual mammogram and follow up led to a biopsy. Thankfully the results were benign. I’m continuing to stay positive but some days are better than others. Hopefully the steroids kick back in soon. James and I are so very grateful for each and every one of you.

Friday January 20th: Today’s appointment in Seattle went very well. My bloodwork looked good. Hopefully my platelets continue to stay in good levels. My body seemed to tolerate the higher dose of chemo. Let’s hope that will be the same for the next increase in dosage. Other than a little nausea and fatigue, the 5 days of oral chemo wasn’t so bad. I’ve started to taper off the steroids but that will be a slow process. We go back to Seattle in 2 weeks. If all my bloodwork looks ok I’ll start another round of chemo and receive the 4th vaccine and the appointments will move to every 8 weeks. Thank you for all your support. It’s really helps me stay positive!

Friday January 5th: What a busy couple of weeks with Christmas and another whirlwind trip to Seattle. Today we met with Dr. Venur, reviewed my bloodwork and I received the 2nd vaccine shot. I will start back on a higher dose of the oral chemo medication on Sunday. Since this is a higher dose than before and everyone reacts differently, I’m not sure what to expect so we’ll just take it one day at a time and hope for minimal side effects. For those of you interested, below is a link to info on the clinical trial I’m participating in. Yes, there is a 40% chance I’m getting a placebo but regardless I’m still getting the regular standard of care with the oral chemo that I’d have received outside trial so it’s worth the chance.

https://www.mimivax.com/survaxm

I’ll be back to Seattle in two weeks and will post an update then. Thank you again to everyone for the amazing support we’ve received ❤️ Thank you James for being by my side through every step of this journey, I couldn't get through any of this without you! Since I can't drive yet he's had to drive the entire trip to Seattle and back 3 times in the last month!

2023

Saturday December 23rd: Hello everyone! It has been a while since the last update which was November 18th, the day I finished up radiation. I’ve spent the last few weeks working on getting into a clinical trial at The Fred Hutch Cancer Center in Seattle. We traveled to Seattle and met with Dr. Venur last Friday, December 15th for blood work, tests and evaluations. On Tuesday I was told I qualified for the trial and we had to be back in Seattle Thursday. This clinical trial is called SurVax and I was fortunate enough to barely make the deadline to get into it. I received my first shot yesterday then we headed home. Unfortunately, bad weather and accidents rerouted us through Leavenworth, WA so we only made it to Spokane late last night instead of all the way home. We are now on our way home and looking forward to having all our kids home for a few days. We will need to be back in Seattle every two weeks for eight weeks then every 2 months. I will start back on the oral chemo pill at a higher dose than last time on January 5th. I will take it for 5 days then take 23 days off. That will be the cycle for at least six months. I will have blood work done each visit and MRI scans every 2 months. We are so very thankful for everyone’s continued support; it means so much to us. Special thanks to my cousin Staci for opening her home to us 😊. I’ll be updating on this page as much as possible since it is a bit easier for me. I still have some minor deficits on my right side which makes texting a challenge sometimes. We are continuing to stay positive and do everything we can to fight this! James and I thank you all, Merry Christmas!

Saturday November 18th: Yesterday I finished up the last day of 6 weeks of radiation and oral chemotherapy. It was a long six weeks; I was very tired and have some really nice random bald spots on my head. I was fortunate to not have any other issues until the last couple days where the brain swelling caused headaches and nausea. The oncologist put me back on a high powered steroid for 10 days. I now get a few weeks off of treatment. I’ll have another MRI on Dec 12th, meet with radiation oncologist on Dec 13th then meet with medical oncologist in Missoula on Dec 14th. I will then start 6 months of higher dose oral chemotherapy for 5 days with a 23 day break each month. I’ll also have an MRI every three months. James and I want to thank everyone for the continued support, it means so much to us!

Friday November 3rd: Hello everyone, this is Shannon doing the update. I’ve been feeling much better, just tired. We met with the oncologist yesterday. My blood work looks good which means my body is tolerating the chemo pill so we don’t need to make any changes thankfully. He was happy to see my energy level but reminded us that the last two weeks of radiation and the 2 weeks after I’m finished will likely be the worst. Monday I will start week 5 of 6 of radiation and chemo. Thank you to everyone for all the love and support. James and I appreciate everything!

Friday October 20th: Hi all, Week number 2 of radiation and chemo pill is complete. Shannon is starting to notice increased fatigue but thankfully no nausea. One of her coworkers gifted her a stuffed llama. His name is Lucky and he’s been riding along to every radiation appointment. On Fridays, Lucky gets to go into the appointment and the staff love him! We’re hoping the next few weeks continue on the same track of minimal side effects.

Friday October 13th: Shannon has successfully finished her first week of radiation and chemo medication. She had some issues with the chemo pill the first couple days but is doing much better now with anti-nausea medication. So far, she’s had no major side effects but the doctor said that wouldn't probably happen until after a couple weeks of treatment. Thank you to everyone for the support, prayers, meals, generosity, and all!

Friday October 6th: Shannon is set to start radiation and chemotherapy on Monday, October 9th. This is earlier than expected but the doctor feels she’s healed enough to get started. Thankfully the radiation can be done in Helena since it is 5 days per week for 6 weeks. The chemo is in pill form. Hopefully everything goes smoothly and her side effects are minimal. Thank you for all the continued support, it is greatly appreciated.

Thursday Sept 28th: Hi All, The news was not great today. The pathology report showed Shannon had a GBM tumor which is cancerous and very aggressive. She will start radiation and chemo six weeks after the tumor was removed, so around October 16th. The radiation is 5 days/week and the chemo pills are 7 days/week. That will go on for six weeks. After that, she takes the chemo pills 5 days a month for another 5 or 6 months. Then we see where we are at after that. Thank you all again for the thoughts and prayers along the way. It's been so comforting. And the meals and generosity have been overwhelming! I'm not sure when the next update will be as this will take a bit to digest and I'm not sure when we'll know more.

Wednesday Sept 20th: Hi all, sorry it's been a while since we've had an update but there's not a lot to update on. We’re still patiently waiting on pathology reports. We see the oncologist on the afternoon of September 28th. Shannon is moving about the house more every day and is slowly starting to reply to messages. Thank you to everyone for your continued prayers and for all the food delivered and generosity; it’s greatly appreciated!!

Wednesday Sept 13th: We are back from Missoula and unfortunately there is no pathology report back yet. The CT scan looked good today and the neurosurgeon said Shannon is doing very well considering the tumor he took out. The doctor has now referred us to oncology for chemotherapy and radiation pending the pathology report. We will know more in the next couple weeks about what to expect. Today was emotionally draining and disappointing for Shannon. She's very tired. At this point we’ll continue to take one day at a time. Thanks again for everyone's thoughts and prayers.

Tuesday Sept 12th: Shannon has been progressing slightly each day. She still tires very easily. She’s starting to move about the house a little more and is staying awake for longer periods of time but continues to nap a lot. She’s starting to look at her phone occasionally but please do not expect messages returned quickly, it’s a lot on her head. We will be in Missoula all day Wednesday for follow up appointments with the neurologist team. Thank you everyone for the continued support and steady stream of food, we are so appreciative.

Saturday Sept 9th: Shannon's had two somewhat good nights and is improving more each day! The headaches are beginning to subside as well so that is great too! She was even able to wash her hair yesterday, which she was so happy about. We have an appointment with the neurosurgeon this Wednesday and we'll see what the future holds. We again thank everyone for the well wishes, offers of help, and generosity that you've shown us! She's not much in the mood for visitors yet so we'll abide by her wishes.

Thursday Sept 7th: Shannon is feeling a little better each day. She is still really short on energy. She tried her first shower since surgery yesterday and it really wore her out. She's still not allowed to wash her hair yet. She isn't sleeping real well yet due to the pain and pressure at night so we are working on that. She had a bout of nausea yesterday too but that also seems to have subsided. Thanks again for all the well wishes and meals. We greatly appreciate it and it is surely helping. She's still not up for visitors. We can let her decide when she is.

Tuesday Sept 5th, evening: The day has gone ok. We got home yesterday evening. Shannon slept for a while but was awake from 11:30pm to 6am. Kind of a long night. She fell asleep around 6am and slept until noon. She's been awake most of the day since then. So hopefully tonight will go better. She says she's feeling pretty weak, and hopefully will get stronger soon. She's already mostly able to slowly get around on her own. She's still not ready for visitors. I will probably drop down to one update a day or less as there shouldn't be much going on besides improvements each day.

Monday Sept 4th, evening: Shannon is doing ok and has been released from the hospital. She's doing so well considering what she's been through in the last week. She's exceptionally worn out and needs to rest. We are still trying to get the pain under control at times. She is not ready for any visitors and sometimes sleeping in the front room so even dropping by isn't a good idea right now please. She asked that I tell everyone she can't get to her phone right now so please don't take it wrong if she hasn't gotten back to anyone. We've been giving her all your well wishes and thoughts and prayers. It has really lifted her up. Let's hope for a good long sleep tonight!

Sunday Sept 3rd, evening: Shannon had a good day. Not a ton to report. She's out of ICU and in a regular room. Tomorrow we'll get results from the MRI and a physical assessment. There's some chance that if it's all good, she will be able to come home for a bit to await pathology reports. She has a great attitude and that helps so much!

Sunday Sept 3rd: It's been a really good morning. They switched up her pain meds and she's doing so so much better today. She slept pretty well and woke up hungry. She jokingly said she ate a 9 course meal. She gets to get out of ICU and back to a regular room soon. Her mobility is back so well that she may not have to go to physical rehab. There still needs to be a physical evaluation and an MRI zoster today. But that all means there's a chance she could get to go home pretty soon instead of staying here a couple more weeks. We are not out of the woods at all with what might be coming with cancer but this is definitely one great hurdle to get behind us. She's certainly not ready for an onslaught of visitors yet but it's headed the right way! Thanks again everyone for your love and support.

Saturday Sept 2nd, evening: Hi all, it's been a long day of recovery. Shannon has had a lot of discomfort, a bad headache, and hasn't been able to keep any food down. She is getting around well still, and can stand on her own, but likes to have a hand to hold to help keep her steady. They decided to keep her in ICU for an additional night since she had such a rough night yesterday. So I had to leave at about 7 PM and can't go back in until 9 AM tomorrow. Hopefully tomorrow night she'll be in the regular room. She's been allowed to have a few visitors and it brightens her day so much. Hopefully it won't be much longer before she's doing better and it won't just be a few very select family members that can see her. Thanks so much to Robin and Sam who have taken such a load off of me in helping to keep everybody contacted about what is going on and who have been there.

Saturday Sept 2nd: Good morning. Just a quick update since there wasn't a lot new overnight. All is going pretty well. The doctor just stopped by and said she did great and he was able to get most of the tumor out. You can never get 100%. Shannon had a few heart palpitations (atrial fibrillation) last night but that seems to be done and they don't seem concerned about it. She's still very tired and hasn't been able to keep anything down because of the anesthesia. Her mobility is remarkable considering how bad it was when we got here. Sounds like she was even able to walk over to the bathroom. The largest concern is whether it is cancer or not. Can't be sure until pathology is back from University of Washington. Shannon will probably stay in ICU (intensive care unit) one more night and then transfer back to the regular hospital area she was in before surgery.

Friday Sept 1st, 8:30pm: James' update: Shannon came out of surgery pretty well, the doctor said she did great, and that he thought he did a really good job of getting as much as he could. The best news is that she has great mobility on her right side and good feeling. So the doctor didn't mess up when he got it out! The other news is not great. The doctor still thinks it was probably cancer, but we won't know until we get back the full test results. I got to see her and she's still pretty groggy, but she looks good and was moving around well. Her biggest complaint is that her head hurt! I can certainly see why. I am not allowed to stay with her in ICU so I am kicked out until 9 AM tomorrow morning. They are very restrictive on visitors in ICU, so hopefully she'll get moved back to the regular hospital room soon.

Friday Sept 1st, 5:30ish: She is out of surgery and in the recovery room. Doctor got out as much of the tumor as was safe to remove.

Friday Sept 1st: Last night went pretty well. Hard to get to sleep for both of us. She slept pretty solidly from about 11pm to 6am. The boys and Shad and a few other family members were able to visit with her yesterday which raised her spirits so much. She was up for a few minutes and mobility has even improved more than yesterday! She has an MRI around 8am this morning and then we'll wait for her to be called back to surgery. Could be as late as 1pm. I'll get the good word out as quick as I can after the surgery is over. Thanks for everyone's love, thoughts, hugs, and prayers. She and I. very much appreciate them.

Thursday Aug 30th: Here's the latest this morning. She slept pretty well and has a lot better mobility and feeling and her mental awareness is better. Steroids are probably kicking in. She ate a good breakfast of blueberry pancakes and bacon. Physical therapy and a shower is all that's on tap for today. Tomorrow she will have an MRI mid-morning and then go to surgery by about 1pm. It will take about 2 1/2 hours. Risk isn't bad for the surgery itself so that is good. Afterwards she'll be in ICU for a day or so and then will be in rehab here for around 2 weeks. We probably won't know for sure whether it's cancer or not for 10-14 days. A lot depends on that. I'll keep everyone posted as well as I can.

Rest in peace beautiful!

July 21, 1976 - September 18, 2024

Previous and Ongoing Updates

2023