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Betsy’s Story

Betsy has a very rare cervical spine brain tumor, a Pleomorphic Xanthoastrocytoma, a rare type of tumor, that spread to her brain lining. She was diagnosed on Dec. 18, 2008. 

Here is a youtube link to Betsy's cancer story and love story with Tim. They were married 4.28.2012 http://youtu.be/9598JGT_7IY

Betsy's journey began in Oct. 2008, while she was pursuing her Masters degree in Social Work from the U of St. Thomas/ St. Kate's, with the first of two bouts of meningitis symptoms. The second bout came in Dec. 2008. During this episode an MRI revealed a mass located between the C3 and C7 vertebrae in her cervical spine. The doctors at the U of MN believed she had a dermoid cyst and because of the complications it was causing her, surgery to remove it was scheduled. Dec. 18, 2008, Dr. Hunt performed the surgery, only to find a tumor, not a cyst. During the 6 hour surgery, 80% of the tumor was resected. Surgery stopped when Betsy stopped responding to stimuli on her right side. A biopsy was done on this tumor and it was found to be a very rare Pleomorphic Xanthoastrocytoma. This is a intermediate, grade 2 cancerous and rare brain tumor. To find one like Betsy has, in the spinal cord, is reported only a few times in the literature. Hers was entangled in and around the cord. To make things more difficult after surgery, Betsy had to learn to walk all over again. The deficits the surgery left her with were devastating. She would spend the next 5 weeks in a rehabilitation hospital. She had considerable weakness in her right leg, arm and hand. There was some on the left side as well, but not as severe. She did eventually regain some of her mobility and is walking, but still has neurological deficits today. She has been unable to return to graduate school. Three months after surgery, in Feb. 2009, Betsy had a VP shunt placed in her brain to help remove the spinal fluid from her brain. The tumor leaks protein and gunks up the flow and re-absorption of excess fluid, causing serious build up on the brain. At this time, we received difficult news that the tumor had laid a covering of cells on her brain lining in the area of the brain stem and cerebellum. Immediate chemotherapy was recommended. Betsy began in Feb '09 with a cocktail of Carboplatin & Temodar. This combination caused many negative side effects, including pancreatitis, several procedures to correct it, a need for gallbladder removal, a need for hormone replacement and vertigo, to name a few. This was discontinued and a new combination was started in July '09 of Avastin & Irinotecan. She continued on this for 9 months for a total of 14 months of chemotherapy. Throughout this time, Betsy struggled with the typical effects of chemo, as well as struggling with the deficits created by the resection surgery. She began to have debilitating headaches in early 2009 and they continue to this day. We have yet to find an answer for the cause or a treatment for the head pain. The months of treatments yielded no changes with the tumor. No noticeable growth, praise God, and no noticeable shrinking. It was decided to stop treatment and monitor with MRI's every 3 months. This is where we are today. Waiting, watching, and looking for answers wherever we can, and praying for her recovery and healing. Each day has its challenges for Betsy. Her quality of life in the physical sense is not good. Her attitude and perserverence are awe inspiring. The journey and the fight continue. God Bless you for following along with us and we ask for your continued prayer support and friendship.

UPDATE: Betsy will begin 6 weeks of full spine and brain radiation March 3 2011 to try to slow the tumors progression and its symptoms at Mayo Clinic in Rochester, MN. 

Cards can be mailed to Betsy Elsen  112 Willow Drive  Delano, MN 55328 or DONATIONS accepted at Betsy Elsen Benefit Account Crow River State Bank  710 Babcock Blvd, PO box B2  Delano, MN 55328

Latest Journal Update

Thank you for all the prayers and positive energy!

Hi all, this is Betsy. Some of you may have heard that I've been having some new "issues" lately. For the past six weeks or so, I've been experiencing sudden dizzy spells, some of which have resulted in falls. Tim also got a rude awakening when my whole body began shaking in bed one evening. He said it lasted less than 30 seconds. I don't remember the episode, but felt really groggy afterwards and had blood in my mouth from biting down hard on my lip. There have also been several incidences with varying combinations of dizziness, nausea, tingly shooting pain in back and arms, tremors, weakness, and my right leg buckling.

The alarm bells obviously went off and I've been in close communication with my doctors. Tim and I got home from Mayo Clinic this evening and I wanted to post an update while things are still fresh in my mind. After various testing (blood, EEG, MRI, CT, neurological exams), we received some answers today via my Neuro-Oncologist, Dr. O'Neill. He is the top dog in his field at Mayo, knows my case well, and I just adore him. I say that even after he tortured me by making me lay flat on my back, hang my head off the exam table, and proceed to induce extreme nausea and disorientation by turning my head side to side. But this test and many other clues validated his suspicions.

Tim and I both breathed a giant sigh of relief because there are NO new neurological problems happening--the biggest of which are NO new growth of tumor and NO evidence of seizure activity!

It turns out that damage to my inner ear is the culprit. This is ultimately another effect of full brain radiation, specifically the "boost" I received near the nerves of my inner ear. My headaches, past ear trauma, and the tumor itself contribute to the problem as well. Granules have formed in the tubes of my inner ear, which block fluid movement, similar to a kidney or gull stone. When the fluid flow is inhibited, the glands in the inner ear cannot send clear signals to the brain regarding balance, movement and spatial recognition. Not cool. This is the reason for the dizziness. The weakness and tremors are also due to my brain not receiving clear signals. The body loses ability to compensate for previous trauma when the slightest miscommunication happens. Our brain's alarm system kicks into high gear to let us know something is not right. It is so amazing to learn about how intricate our bodies are, and to think about all the functions taking place inside of us 24/7. We are truly uniquely and wonderfully made, that is for sure! I just need to work on trusting that we'll all be knitted back together perfectly once we leave this imperfect world.

So what now? Well, we have to wait it out a bit and see if my system can adjust to another aftershock of radiation. I admit, I was hoping for a more immediate resolution! However, if the symptoms do not resolve or get worse, then we'll explore medication and a form of physical therapy that is used for people with vertigo. I am told that induces all kinds of unpleasant body functions in an effort to restore balance in the inner ear. With that in mind, I am more eager than ever to tap into God's "inner ear" for a different kind of intervention. :)

So...the journey continues. I do still feel a bit unsettled, but thankful at the same time to have received some insight. I prefer it much more than the furrowed brows and blank stares that I've gotten in the past, hehe. But in all seriousness, thank you to my brilliant doctors, supportive family, and faithful prayer warriors. You all make me feel loved and and never alone. And what is better than that? 


I love you, Toni, and will never forget you. I can't wait to hear your laugh and sweet singing again. Lord, please be near to the hearts, minds and bodies of those who I know are suffering right now, in ways that I cannot comprehend. Please stay near as we face our temporary battles and help us to not lose hope in a broken world.

24 people hearted this


12 Comentarios

Mark Fussell
Well Betsy, another issue but at least you know why! I am glad you have an answer and are so articulate in describing what is going on. Our best wishes to you from us in Washington.
Love Mark, Judy, and Erik
1 person hearted this
Brian Czock
By Christine
Hello Sweet Betsy!

I'm so glad to hear you received some answers that were unexpected yet better than what was probably feared. Thank you Lord for the care and thoroughness of her doctors!! I wish we could just ream out the tubes and it would be all better for you! In the meantime prayer warriors lifting you up will be doing the work while waiting on a stop to the side effects. Jesus does hear our prayers and is actively interceding on our behalf! Prayers for strength, endurance, peace, steady feet and a happy heart that knows she's loved by so many! Love you Betsy!! xoxoxoxoxo
1 person hearted this
Sandy Daron
By Sandy

You are such an amazing woman!!! I am SOO very thankful the problems are not directly due to the tumor or growth. What a relief!! Poor Tim...he must have been so worried.

I pray inner ear will improve and those granules will shift.


"When you’re facing a tough time, think about these three things: your relationship with Me, My promises in the Bible, and past experiences of making it through hard times. Remember that you and I together can handle anything." -Jesus Calling for Kids by Sarah Young "By his power we live and move and exist." -Acts 17:28 (ICB)

Love ya,
C.O.L.E.s Foundation (Caring Openly, Loving Eternally)
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Email: sandy@colesfoundation.com
1 person hearted this
Ronald Zachman
By Barb and Ron Zachman
Ron and I will keep you in our prayers. You are such a trooper and I admire your positive attitude and trust in God, who can do all things. I know that Grandma keeps you in prayer as well...
1 person hearted this
Darlene Sundheim
By Darlene Sundheim
Wonderful news. Praying for relief and may God bless you with peace and joy during this holiday season. You are so beautiful.
1 person hearted this
Renee Elsen
By Renee Elsen
Betsy, I was so relieved when I read this news. Thank you for posting all you did. I shared it with Jeannie. The spirit God has given you has never left you. I love you Bets. Renee
1 person hearted this
audra popp
By audra popp
Well---sorry you are experiencing this! Not great news 🙁but I'm thinking you were expecting worst. That dizziness stuff is scary cause it feels like you're in a bubble-spinning around but no one else is. Scary also because of the potential for falls. It just limits what you feel you can do. Unfortunately everything foreign to our bodies comes with side~effects! I love your term "aftershocks" ~ very fitting!! You are in the best of hands for sure. I will pray intently that God is listening to your prayers in "His inner ear" to fix yours.
1 person hearted this
Ted May
By Ted May
You face this situation with characteristic courage, understanding and faith. God watch over you.
1 person hearted this
Lori Elsen
I am so incredibly humbled by your grace and strength, sweet daughter of mine. I love you so much.
2 people hearted this
Sandy and Cliff Simon
By Sandy and Cliff

So happy to hear you have some answers. You are amazing and strong. Love you both.
1 person hearted this