Never once did I intend for this to be a website where I share updates. I’m not the kind of person who started a blog so family and friends could get updates on our personal life and see cute pictures of our kids. In fact, all 6 1/2 years of sharing online, I have worked incredibly hard to keep this a place of inspiration, a place where stories are infused with insights for YOU, my reader. After all, this place is for YOU. I want to help you see the significance of YOUR story. But as I work slowly, but surely towards my ultimate writing and photography goals, I’ve realized that I can’t expect YOU to see the significance of YOUR story unless I see the significance of MY story (which means I need to share my story, too). Plus, life has gotten out of hand with all the medical stuff these past couple months. I started this series about our journey through choroidal melanoma four years ago, and I am COMMITTED to seeing it through. But the truth is, there is so much happening these days that I can’t possibly keep up my routine of writing a medical update infused with inspiration every time we have news. I’ve been debating what to do about this, and although this goes against every fiber of my being, I am going to LET it GO and move along. Today, for the first time ever, I am sharing strict medical updates on my website, IN this post. Because I’ve promised to share updates on my website and I know people are checking in on our family. Even more important, people who are experiencing choroidal melanoma, ocular melanoma, uveal melanoma and all the metastatic versions have found this series through Google searches, and I am committed to keeping our story complete for others going through a similar journey. So with that, here are brief medical updates from the past TWO months!
MEDICAL UPDATE 11.27.2018
Good news and LOTS of updates. We just got home from TWO full days of screening. Seth had three rounds of blood work, an ECG, a meeting with the awesome nurse who heads up the IMCgp100 clinical trial, a lengthy tour of the hospital and facilities, an ultrasound-guided liver biopsy, urine analysis, and a CT scan with oral contrast. The head doctor, head nurse and medical monitor for the research study met today to discuss Seth’s case, review all the data and make a final determination. It was an INCREDIBLY long and grueling day, but we made it through and got the good news around 4:00 that Seth has been officially accepted into the IMCgp100 clinical trial and can begin treatment on Monday, December 3rd! Seth is now off ALL Prednisone. The research team told us they’d need Seth off of Prednisone for two FULL weeks before he could start treatment, but it was determined that the lead doctor had leeway within study guidelines to give the go ahead to start sooner since Seth is off Prednisone and it wasn’t used to treat a brain condition. The IMCgp100 treatment will be on a WEEKLY BASIS, indefinitely, until the treatment isn’t working anymore or side effects are too severe to continue. First three treatments will require inpatient hospitalization. Fourth treatment MIGHT require inpatient hospitalization. After that, it will be on an outpatient basis. We are grateful for my dad who came to stay with us early-mid November, and Seth’s parents who came to stay with us mid-late November. My mom is flying out and will be here for 3 1/2 weeks to help during these first treatments. A meal train is going to be up and running for anyone who wants to help out with meals, random household tasks, child care/transportation, and miscellaneous needs. I will be spending the next three days doing a whole host of random tasks in preparation for treatment starting, and Seth will spend the next three days getting ready for a month-long leave of absence from work. Thank you all for your concern, love, care, support and prayers. We are blessed and surprised by your generosity and kindness.
MEDICAL UPDATE 12.3.2018
After four months with no treatment, the first infusion of the clinical trial drug, IMCgp100, is now complete! Seth was admitted to the hospital at 7:30 this morning in preparation for the infusion. He will be here until at least 10:00 tomorrow morning. Side effects typically set in 4-6 hours after the infusion, so now we are basically waiting around for side effects to set in. This morning, there has been a fair amount of discussion about the pros (and cons) of getting a port placed for ease of infusions and blood draws in the future, but also in case of emergencies such as significant drops in blood pressure. No decision yet. It’s up to Seth. My mom flew in yesterday and will be staying with the kids for these first 4 weekly infusions. Our first meal train dinner was delivered last night before we left, and it was delicious and perfectly timed. Prayers that Seth’s side effects won’t be too severe, that we will figure out a long-term plan for child care once my mom leaves, that Seth’s body responds favorably to the IMCgp100 clinical trial drug, that he is able to stay on it as long as possible, and that the 15 tumors in his liver stabilize or shrink (40% chance of some level of shrinkage; another 10-15% of people see stabilization). Thank you for your prayers and encouragement for Seth and our family as we continue to fight metastatic uveal melanoma. God bless you all.
MEDICAL UPDATE 12.10.2018
Port was placed this morning, and IMCgp100 infusion #2 wrapped up around 12:35 pm. Similar to last week, Seth will be in the hospital until tomorrow mid-late morning. Typically, side effects start kicking in 4-6 hours after the infusion is done, but last week, Seth’s side effects didn’t start until 10 hours later. Severe nausea treated with IV anti-nausea meds caused severe whole-body restlessness which took a couple hours to clear before he was able to sleep. Low blood pressure (not too bad), fever (not too bad), body aches & headache, pink sunburned-looking skin, dry and itchy skin all week and slightly sore forearms all week. We’ll see what this week’s infusion brings. Just hoping and praying that this treatment is effective in shrinking or stabilizing the 15 liver tumors, and that Seth is able to stay in the trial as long as possible. Thank you for your kindness, your love and your support.
MEDICAL UPDATE 12.17.2018
It was a long and difficult week between treatments, but yesterday Seth was back to his normal self. IMCgp100 clinical trial treatment #3 is DONE! We are in the hospital waiting for side effects to kick in. First week, side effects kicked in 10 hours post infusion. Last week at the second infusion, side effects kicked in 5 hours post infusion. We are currently sitting 1 1/2 hours post infusion, and everything is still fine and dandy. This is Seth’s last scheduled inpatient hospitalization for this clinical trial. If everything goes okay today and tomorrow, infusions will continue indefinitely, every week on Mondays on an outpatient basis, until it stops working or side effects are too severe to continue. If you have any questions, please let us know. We appreciate all of the amazing support and kindness everyone has extended during this 6-month journey through metastatic uveal melanoma. Requesting prayers for a better week for Seth this week. Thanks, everyone.
MEDICAL UPDATE 12.24.2018
It’s 11:00 am on Christmas Eve and we just finished Seth’s 4th IMCgp100 treatment. Metastatic Uveal Melanoma does not take a break for Christmas! On our way home, anticipating side effects will kick in by about 3:00 pm. We are praying for 1) Side effects to happen even though it’s Christmas Eve, because side effects mean the drug is working the way it should. 2) Side effects won’t be TOO debilitating. 3) That Seth will be able to enjoy SOME of Christmas Eve, and that he will be able to enjoy ALL of Christmas Day with my mom and our three kids. 4) That Seth will have a good week between Christmas and New Year’s. 5) That he will be prepared to return to work 4 days/week starting January 2nd, and that transition back to work will go smoothly as we continue the travel and weekly clinical trial treatments. May the Lord bless you and keep you close this Christmas. Thank you all for your love, prayers and kindness. XOXO
MEDICAL UPDATE 12.31.2018
Clinical trial treatment IMCgp100 #5 is now complete! The two big kids came with us this week since they’re still on break and we wanted an opportunity to demystify the experience for them at least a little. Last night, Seth and Cooper went to a basketball game right after we arrived, and Elsa and I ate at an Italian restaurant. The worst of last week’s side effects set in 8 1/2 hours post infusion, and lasted for 5 1/2 hours. Today, we’re hoping for a lessening of side effects since it’s New Year’s Eve and we’d like to enjoy some time with the kids. We’d also like side effects to start lessening more quickly now because Seth returns to work this Wednesday, and is hoping to pull off a 4-day work week if possible. Thanks, ya’ll, for your love, prayers and support. Have a Happy New Year!
MEDICAL UPDATE 1.7.2019
Seth’s weekly clinical trial treatment continues. IMCgp100 #6 is now complete! Last week, side effects were the best he’s ever had, with the exception of nausea, headache and terrible itching that kept him awake during the night. Seth was on full-time short-term disability all of December, returned to work on Wednesday, and will go on intermittent short-term disability starting this week with a 4-day work week. First three days back at work went surprisingly well. Best and most normal three days we’ve had since October. Saturday and Sunday, Seth was back to his “new normal” with more fatigue and needing to keep his activity level and rest in check. First set of scans since starting this new treatment are scheduled for January 27th. Please pray that this treatment is effective, that scans will show stabilization or shrinkage of the 15 liver tumors. Pray for continued energy for Seth’s 4-day work week. Pray for endurance, health, clarity and peace for me as caregiver. Pray for endurance for us as a couple and family as we realize the weight of indefinite weekly travel for treatment. Thank you very much for everyone who has helped out with meals, love and prayers from a distance, child care, and for those who have helped out with generous financial contributions so we can make it through this time of uncertainty. God bless.
MEDICAL UPDATE 1.14.2019
Seth just finished IMCgp100 clinical trial treatment #7. Last week’s side effects were similar to the week prior, and were much more manageable. Seth laid low in bed all Monday night after we got home. This was his first 4-day work week on intermittent short-term disability. It was a long week, but everything went fine. Seth is due for another follow-up appointment for his primary eye tumor, so I am working on getting a referral and clinic notes sent so we can transfer care and get scheduled with a new provider in Portland. Biggest prayer request moving into the next two weeks is that scans on 1/27 show stabilization or shrinkage of the 15 liver tumors. Thank you very much. God bless.
MEDICAL UPDATE 1.28.2019
Yesterday, Seth had the first set of scans since he started the clinical trial, IMCgp100, for metastatic uveal melanoma. GOOD NEWS! There are still 15 tumors in the liver, but NO NEW tumors have developed since Seth’s last scans in early November. They only shared details about two of the biggest lesions. The central lesion is “more necrotic,” meaning it looks like some of the tissue is “dying away.” The other lesion is “stable” in size. So we will continue the weekly infusions until the next set of scans in 8 weeks, and will go from there. Good news for now! Seth can stay on this trial and we will keep on keeping on! (In other news, we went out for a special fondue dinner last night after scans. We very purposefully stayed away from all seafood because of Seth’s fish/shellfish allergies, but this morning, Seth woke up with swollen eyes, swollen lips, and must have had a swollen tongue because speech was impacted. We reported to three providers here at the cancer institute. They checked with the head doctor of the study who gave permission for Seth to proceed with infusion #9, but did give him Benadryl and want him to take it for the next few days. Hence why MY picture is featured today, NOT Seth’s!) Thanks, everyone, for your care, concern, love, prayers, and tangible gifts of support to keep us going during this journey. Thanks and praise to God for giving us more time.
MEDICAL UPDATE 2.4.2019
Clinical trial IMCgp100 infusion #10 is done. We are waiting through a series of post-infusion vitals, Seth’s port will be de-accessed, then we will be cleared to make the drive home. Today happens to be World Cancer Day, so let me take a moment to provide a little education on Seth’s specific type of cancer. Every year, 6 in 1 million people are diagnosed with ocular melanoma, a very rare eye cancer. 50% of those patients experience metastasis, so the type of metastatic melanoma we are experiencing is INCREDIBLY RARE. Only 3 in 1 million people completely understand what Seth is going through right now. His cancer is considered an “orphan cancer,” meaning it is so rare that it doesn’t get much attention or funding for research. But as far as we know and have been told, the trial he is on is specific to his diagnosis of metastatic uveal melanoma. We are grateful that he is able to continue on this trial for the next 8 weeks, and we are hoping he will be able to continue for another 8 weeks after that and beyond! In other news, Seth landed a HUGE deal at work this week, so it is possible to live with metastatic uveal melanoma AND make major business deals at the same time. Way to go, Seth!
