How the crazy started: Initial Diagnosis and timeline updates

7CM Brain Tumor, Right frontal lobe

on August 5th 2019 I had a seizure at church as I was finishing the last class  in a church planting certification with my husband. I was taken to Paoli hospital that evening . They found that I had a 7 CM tumor on my right frontal lobe. It is so large that the right hemisphere of my brain has moved a little further away from the left hemisphere. And they believe that caused the seizure. The neurosurgeon said the mass had to be removed due to size but he also has to first rule out cancer so the brain tumor has to be biopsied he did a full body scan to look for other signs of cancer and we praised God that it was clean other than a kidney cist that he wasn’t  worried about.they remeasured the mass an found that it shrunk to 5 CM then to 3.5CM in just a day. As a friend pointed out, prayer was the only intervention at that point. I was scheduled for brain surgery on August 16th to remove and biopsy the mass at the Penn Brain Tumor Center in Philadelphia. After confirming the glioblastoma(GBM4)diagnosis on the operating table, which is considered a "terminal" cancer, with a 100% chance of recurrence within 20 years, I was injected with with a cold virus engineered to seek and destroy cancer. So far, the virus is doing its job. You can look the trial up on clinicaltrials.gov under ABTC-1603. The pathology showed the tumor to be methylated wildtype (See the jargon for more info)

Side view

Clinical trial protocol ABTC-1603

after surgery I started 6 weeks of daily radiation, chemo, and immunotherapy all at the same time. Though this disease is considered "terminal" within 12-18 months, I have met , 20 year survivors, 10 year survivors. While still I met others who didn’t make it past 2 months of their diagnosis. SO, I have been learning to live in the tension between consolation and desolation, always planning for the worst while still airing on the side of hope and living life without limits. Only God knows when He will return or will call Me Home, and I plan to keep running the race without hesitation

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  Post surgery, the green cross hair is the resection cavity where they injected the virus. The red is swelling.

Whether you have a diagnosis or not, tomorrow is promised to no one.  I now understand more deeply why it is important live as if every day is your last day. I hope that I used my remaining time to encourage others in faith, to care for those in crisis, to invest in growing my sons character, to loving my husband more fully, and serving the Lord. I have chosen to celebrate the time left instead of mourning the time lost.Thank you to everyone who has encouraged me in times of discouragement.

Timeline

• 8/5/19 Seizure
• 8/16/2019: craniotomy and resection. Biopsy confirmed glioblastoma (IDH WT and MGMT promoter methylated), and injected with ABTC-1603 Virus. 
• 10/7/2019 Completed intensive 6 weeks of intensive chemo, radiation, and immunotherapy. 
• Nov 2019 I started maintenance Temedor (Chemo). 5 days on 23 days off, 1st of 12 months
• December 2019 my MRI showed I was cancer free. What an mazing Christmas gift.
• 2/14/20: The scan showed I was still cancer free! I went back to work the following Monday, and then we went into COVID-19 Quarantine Shortly after.
• 4/7/20: Praising God for another cancer free scan. We celebrated our 10 year anniversary on the 17th in quarantine, but still there was no place I would rather be.
• 5/18/20: Threw back out just sitting in a work chair. I had to sleep in my office for a week, until 5/22 when I started PT. I could walk again after 1 PT Session.
• 6/11/20:10 month scan is Cancer free. Scar Tissue and swelling are present, but within normal parameters. Five days later, I received the official MRI report that identified an anomaly that warrants a spinal MRI. The Anomaly could indicate GBM on the spine.
• 6/23/20: 3 hour Spinal MRI showed no evidence of disease.

• 8/11/20: 12 months cancer free! MRI looks great, the anomaly is unchanged, so my oncologist is confident it was just radiation scaring.13 months from Diagnosis was 6 days ago.

• 8/16/20: 1 year CRANIVERSARY! 12 months cancer free! We celebrated by letter boxing (Kid version of geocaching).
• 9/20/20: tomorrow I start round 10 of 12 Chemotherapy. I was accepted into a leadership training program at my job, and also accepted into Chaplain school through Johns Hopkins. It feels good to be making long term plans. 10/1 is my next MRI.
• 10/1/20: 14 months cancer free. Johns Hopkins did the pinning ceremony this month, and I am looking forward to finishing the leadership class next month., next MRI 12/11.praying for another great Christmas gift :)
• 12/11/20: Best Christmas gift (After Jesus), 16 months cancer free! The next MRI is on 2/12/2021 That is a huge one. Many people with this diagnosis only live 12-18 months. Please pray with me for a clean 18 month scan. Next milestone after that is 2 years. After 2 years the risk of recurrence drops, but never goes to zero.
• 1/1/21: Its New Years Day, and I have mixed emotions. I am thankful to have lived to see 2021, but I mourn the lives lost in my support groups. nearly every day there are 2 or more who die. It becomes overwhelming. Then on top of that there have been 346k COVID Deaths. two were parents of cousins, and one was a dear friend whose wife is also positive and was hospitalized the week of Christmas. I didn't expect survivors guilt, but celebration and mourning can coexist, so I choose to celebrate.
• 2/12/21: 18 Months CANCER FREE!! This is a major milestone in the life of GBM Survivor. In March I graduate from my first Chaplain unit. God is Good. The next major milestone is 2 years. At that point there is a slight drop in recurrence risk. Please be praying for the next 6 months of more clear scans. Please also be praying for other GBM Patients that they receive the same blessings.
• 4/9/21: 20 months cancer free! 2 more appointments before hitting the 2 year mark. Please pray for more clean scans.
• 6/10/21: 22 months cancer free. I have been struggling with anxiety and sleeplessness. Between treatment and Covid I am finally wearing down. Unfortunately, counselors are all booked due to the Covid surge in demand.nothing a little medication can’t help with. We all need to make our mental health a priority, and not a stigma.
• 8/13/21: 2 years cancer free! my MRIs now go from every 2 months to every 3 months.the 17th is the 2 year anniversary of my craniotomy. As we say in the GBM community, it’s my craniversary. :).
• 11/5/21:Another clear MRI. I am so thankful that our statistical diagnosis is NOT our individual prognosis.
• 12/16/21: Clear Scan
• 2/4/22: Clear Scan
• 5/6/22: Clear Scan (I can get used to this)
• 6/6/22: Partial Seizure on left side of face
• 6/9/22: MRI, EEG, and Opthomology all clear. We think the partial seizure was due to cough medicine used due to allergies. Decongestants lower the effectiveness of Seizure medication. What a relief.
• 8/8/22 Celebrated 3 years of survival on the Royal Caribbean Oasis of the seas.
• 8/16/22: 3 year craniversary
• 8/18/22: Clear 3 year scan. I told the Dr, I still want to come ever 3 months for monitoring.
• 11/27/22: This scan found 3 spots that appear to be in the radiation zone. The Dr. presented my case to the tumor board. They all agree it needs to be monitored, but is not overly concerning. I have to go back to ever 3 months now, which I am OK with.
• 1/20/23: In this scan the spots grew, but not at a consistent rate as GBM. The Doctor and Dr of radiology agree it looks like it may be brain swelling and scar tissue, but they can't rule out cancer, So I go back in 2 more months. If there is more growth they may want to do another biopsy, but they are not in easy to get to places, so I am praying for Godly intervention as he has done these last 3 years.