2017 Race for Hope - DC

#FunkCANCER
#FunkCANCER

#FunkCANCER

I am uniting with others to make a difference in the fight against brain tumors. I am passionate about this cause, so I’m taking action and need your help. National Brain Tumor Society and Accelerate Brain Cancer Cure are making strides for a cure - but more needs to be done. Please join in my effort!

Join us in saying #FunkCANCER! and everything it does to disrupt life as we know it.

Background:

A Miracle for Marie Funk

March 26, 2003 was one of the happiest days of my life. That was the day Marie and I held hands as we nervously and happily said our wedding vows to one another. That same day, twelve years later, we again found ourselves holding hands, nervously and anxiously sitting in an urgent care center, waiting to hear results from a CT scan that was performed on Marie after experiencing a mild seizure. We waited, imagining the worst.

The entire next week was a blur. We switched into “survival mode” the moment the doctor told us the CT scan revealed a brain mass. Six days later, Marie was back in the hospital where doctors performed a successful craniotomy to have it removed.

On the seventh day, I walked into Marie’s recovery room. Through tears she spoke, “It’s bad news. I have stage IV cancer.”

As the father of three little girls and being the one lone male in an all-female household – I always believed nothing could surprise me anymore. I was wrong. Nothing could have possibly prepared me for that moment. The blur of that past week just stopped as I took in what Marie said. In the blink of an eye, my world, our world, flipped upside down. Everything is different.

My wife was diagnosed with Glioblastoma Multiforme (GBM) – the deadliest brain cancer known. GBM is comprised of highly malignant cells that are extremely aggressive. Some of you may have heard of GBM, as it has been in the news a lot lately – from a young lady advocating for a person’s right to die with dignity, to Duke University conducting a crazy, yet possibly effective new treatment of injecting the Polio virus into the brain to try and kill nasty GBM cells.

Marie’s pathology reports revealed her tumor was comprised of high grade malignant cells that will most likely cause the rapid growth of additional glioblastoma tumors. Her team of doctors decided her course of treatment after the craniotomy would be a combination of intensive radiation and chemotherapy. Future treatments may require her participation in an experimental clinical trial.

Our three girls, Krista 10, Kara 6, and Kaylee 2 need their mother for many years to come. I need my wife in this world and will do everything and try anything to make that happen. We want Marie to make the most of every moment of every single day. Therefore, we humbly ask for prayers and support with the hope that she will live a longer, more productive and happier life.

There is a long road ahead of us. Luckily, Marie’s strength and youth are on our side. This, along with your support will help her face this ongoing battle, because currently, GBM has no cure. The chance of reoccurrence is 100%. Marie is determined to not be part of that statistic and beat all of the odds as a survivor. Please join us in raising money for Marie’s medical expenses. And if you do not know Marie or her family, please help us raise money for a woman who is a strong believer in Christ, loving wife, mother of three beautiful daughters, and only child to Patricia and Mark LaWall. Your generous support, love, and prayers for our family are more than appreciated.  

"But when Jesus heard this, He answered him, "Do not be afraid any longer; only believe, and she will be made well." Luke 8:50

“Don’t worry about anything; instead, pray about everything.  Tell God what you need, and thank Him for all he has done.  Then you will experience God’s peace, which exceeds anything we can understand.  His peace will guard your hearts and minds as you live in Christ Jesus.” Philippians 4:6-7

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Bless you and thank you for all the love and support. Your support has helped with medications and Marie’s new Keto diet. We’re too early in the game to have received the first medical bills but know they’re on the way – Thank you!

Marie’s been feeling a pain in her side and Dr. Lewis felt it best that she have an abdominal CT last Friday. It’s hard to make the assumption everything will be okay after it failed us so completely last time. So pray for no more bad surprises and good news on these results.

Before the CT we met with a genetic counselor to discuss what different suppressor gene’s they will be testing Marie’s DNA for. I’ll post the list and documents later for those interested. This was both an enlightening and scary endeavor. This brings the new complexity of knowledge that our children and mother in law could suffer a similar early age cancer. While GBM isn’t dominant or hereditary early age cancer does appear multiple times in Marie’s maternal line. The results should be back in 3-4 weeks.

Marie starts 6 weeks of chemo and radiation Tuesday and is hoping to be one of the lucky ones that don’t experience side effects.  Prayed up and fingers crossed!

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Week one of Chemo and Radiation is OVER!  Five more hopefully quick pain free weeks to go!  Then on to DUKE  

This has been a rough week emotionally but we're thankful the results came back !!!negative!!! for the liver screen and abdomen CT; praise God we're only battling one beast.  

Last night Marie and I broke the news to our two oldest Krista and Kara.  We couldn't be more proud of the way they handled it and the maturity with which serious questions were asked.  It's true what they say kids know more than you'd ever think and it's wise to include them in the Team effort.  I say team effort because I've been relying on many of your txt's, phone calls, and emails for support and plan on doing so for a long time to come.  Marie and I have been enjoying some great friend therapy - I can only hope we continue to stay in touch.  

Much love to new family and old friends that have always had a place in our hearts.    

I don't recognize more than half of the names that have donated and many of the ones I do recognize are blasts from the past and brought back terrific memories.  I can't begin to thank you all enough or begin to tell you how much this means to us.  

Much love and Gods blessings,

The Funks

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A Mother’s Day update:

The family spent a great day pretending all is well and enjoying every moment.

This week a little more than a month after surgery it’s been confirmed, Dr. Kader removed 98-99% of the tumor. This is the best-case scenario! Dr. Kader was surprised by the horrible diagnoses after removing the tumor; unfortunately pathology tests don’t lie.

Our hope is for a less aggressive form of a very aggressive disease. People keep telling me - find every bright side; I’m working hard at it. 

Blessings,

Will

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Marie graduated chemo and radiation this week!

She’s doing wonderful. Today she planned a garden in the backyard and spent most of the day out with her Mother without much fatigue.

Following a strict Ketogenic diet is the most challenging part of life at the moment but fewer restrictions since Chemo’s over is making her life easier.

One our family’s best friends have come through in a huge way. She has a direct connection to not only someone that was treated in the initial Duke trial but Dr. Friedman, the man in charge of the program! Small world doesn’t cut it for this bit of luck - this is proof of God’s hand in our life.

Marie’s scheduled for a follow up MRI July 7th at Kaiser in Tysons Corner closely followed by a trip to Duke University for evaluation and trial placement.

We can’t thank you enough for all you’re support has helped with and for being such wonderful friends and sources of strength.

God bless,

Will and Fam

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#at Duke…there is HOPE

This trip has been a success and we’re so thankful to everyone that helped us make it to the Preston Robert Tisch Brain Tumor Center at Duke in NC.

Marie’s doctors and support team in Virginia are terrific but there’s a noticeable difference when dealing with a specialized team. That knowledge will be leading us to check out John Hopkins Brain tumor center but we can’t imagine a better program than was witnessed at Duke.

We approached Duke to have Marie placed in their active clinical trial system and see if she was a candidate for any trials currently underway that may have been overlooked. We’re leaving with a renewed sense of HOPE and the knowledge that Marie now has an active file that will be reviewed and watched over by Dr. Vlahovic, one of four Neuro-Oncologist that work for Dr. Freidman. Knowing that a dedicated Brain Tumor specialist will be reviewing future MRI scans and a phone call away for any question we develop is a great feeling to have.

The first 15 minutes with RN Sharon Smith gave us more HOPE than we’ve received from all the time spent with doctors back home. Sharon started the appointment with, “You’re new scans look amazing, wonderful, everything we want to see in a post OP/chemo scan.” Just hearing the message delivered like that was much better than our current Oncologist’s brief email (the MRI scan showed no new tumor growth.) From that point on Marie didn’t stop smiling and neither of us could’ve been happier with what they had to say.

Great bits of new information! 

Marie’s tumor is/was a Primary tumor, meaning it originated in the brain and didn’t develop from another cancer located outside of the brain. Her tumor tested positive for the IDH-1 marker which means GBM developed from a smaller grade tumor and evolved to a Grade 4. This is better than when a tumor starts as a Grade 4 but we’re still trying to learn more about what this changes and why it matters. (It does impact the trials you are eligible for) It also explains why there were so many misleading queues at the onset of her diagnosis and why the surgeon was surprised with the GBM pathology report. We’ll never know how much of the tumor was high vs. low grade but the team at Duke believes the low-grade tumor cells largely out numbered the high-grade tumor cells. The appearance of the tumor noted by the surgeon and the tumor failing to show up after contrast on the scans both are positives that lean more towards low-grade tumor cells.    

The Polio Vaccine will likely not be a good fit for Marie, which is a good thing. Should the tumor come back Duke is working on a very promising immunotherapy for what they believe causes Maries specific form of GBM. With the grace of God Marie won’t have to worry about this for years to come and in those years this new treatment will be perfected.

Both the doctor and nurse both said they had no doubt Marie would be their patient for a very long time and that they had many long-term survivors. That’s something you don’t read anywhere! Praise GOD!

Dr. Vlahovic thinks Marie's current treatment plan is perfect for her. It starts Monday when Marie takes the first of twelve five-day chemo cycles that occur every twenty-three days.

We want to thank everyone again for the Prayers, well wishes and for the contributions that helped make this trip possible. If nothing else comes from this trip its elevated Marie’s mood and outlook more than I thought would ever be possible. For that I am so thankful. She deserves so much more than I can give her and am so glad to have the family and friends we have helping to keep our life in one piece.

With LOVE and Thanks,

Will

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Last April Marie was recovering from a successful craniotomy at Virginia Hospital Center. 

This past year’s craziness of doc visits, MRI’s, Chemo, medications, depression, group therapy, Duke visits, weekly tests and the list goes on; would bring most to their knees.  Not Marie, her mood is terrific and today she told me she’s feeling stronger than before the diagnosis and I’d like to add looking more beautiful than ever.

Along this journey we’ve noticed growth and strength in our marriage and a unity amongst family and friends that’s miraculous in itself. 

As we brace for the stress of this Tuesday’s MRI (8th in the journey thus far) we take your prayers and well wishes with us, lifting us up, reminding us that we aren’t alone on the path.

We love and appreciate all that our wonderful family, friends, and coworkers do for us daily making life endurable.

Love & Thanks

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