Week 52.

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A lot of people have told me I need to write a blog to keep track of my son’s path as he starts chemo to stop the growth of his Spinal Cord Tumor. ONE person said this to me “You need to be an advocate to others that are going through this, show them that they are not alone and that they will make it through this.” These words came from my daughters VPK teacher Ms. Mari. I went to this preschool and so have my kids now, its like a family. When my father in laws health got bad and I was still in school they made sure my kids could be there, and be taken care of the way I would have if I were with them, and for that I am FOREVER grateful. Lylah’s teacher said something to me no one else would. That I needed to talk about this and put our story out there.. So here it is…..

Long story short… Since May (2016) of last year Bennett had a MRI of his brain, which turned into a MRI of his spine, that showed a “widened cervical spine” and it needed to be watched. November (2016) that widened area had turned into a tumor which we (I) found out about on December 16, 2016., by December 19th a surgeon told us it needed to come out and that he had scheduled the surgery for the next day; But after seeing Bennett and seeing how he was walking, talking and acting like a normal 2 year old he could let it go until after the holidays. January 5th 2017, Bennett has his laminectomy to remove the tumor in his spinal cord at C4-C5. The biopsy showed us that it was a Grade II Diffuse Astrocytoma. Everything post op went amazing, we were only in the hospital 4 days, very minimal therapy was needed for Bennett. He was doing amazing, walking, talking and running around like a 2 1/2 year old should be. His follow ups were scheduled for April and we went on with our lives.

April 19th 2017, Bennett had his MRI in the morning and a follow up appointment at 11:20. His MRI was finished at around 10:00 A.M. and we decided to go up to his Surgeons office to see if they could get us in early. As soon as we got in the office I felt anxious and just wanted to go home. ( Not knowing why and figuring I was having a moment we just sat there and patiently waited. ) The Dr. comes in and is pulling up images. His MRI’s from December 31st, January 6th, and now April 19th. I could see the tumor was back. I couldn’t find the words to put together. My husband just looked at me like “What did the Dr. say that i didn’t hear.”. I started crying as Bennett’s surgeon just looked at me shaking his head and said “Yes, it’s growing back.” I honestly can’t remember the rest I know I asked him what do we do now? Chemo? Radiation? More surgery? But i can’t exactly place everything together, it’s all such a blur.

Bennett had surgery to place a port on May 2nd, 2017. On that same day he started his first treatment of chemotherapy (Vinblastine) . He will have chemo every week for the next year. 51 more weeks of this and then fingers crossed we won’t have to face this monster again. They’ve told us his hair will start to fall out around week 3-5, and we plan to shave it off before it falls out. Tonight my son had his first fever of 100.9. To me that is terrifying, Lylah is almost 5 and I’ve never owned a thermometer because she’s never had a fever and neither has bennett up until this point. Even though it was only 100.9 and we don’t have to take him to the ER until it reaches 101, it absolutely felt wrong, feeling his little head and knowing he was “hot” and theres nothing I can do from the outside. I love my little man so much and I have to find the good in his tumor, in all of this mess. My happy, loving, wild little man can’t go through all of this just because, there has to be a reason, and I’m convinced its because someone else needs to hear his story, our story, and what we’re going through and will go through over not only the next year but the rest of my son’s life he will have to follow up with his tumor.

I’m not sure how this is going to go, week by week, but i know there is no way we’d be able to make it through this with out the support from everyone. Not only family and close friends, people i haven’t talked to since high school, people who weren’t even my friends in high school, to people i’ve never even met telling me they’re putting Bennett on their prayer list across the country and everywhere in between. It’s amazing what the power of prayer can do and i can’t even begin to thank everyone enough for all of the Love, Prayers and Support in a time like this. Thank you to everyone so much.

5 thoughts on “Week 52.

  1. My children are CPEEC graduates, and I have heard your story. Your family, Bennet, his medical team, and your support group areall in my prayers. Keep your eyes on God, he will carry you and your sweet baby when you can’t carry yourself. I am an occupational therapist who specialized in spinal cord injury for many years. If any needs arise that I can help with from that perspective, please let me know. I would be honored to help in anyway. For now, I will do the most powerful thing I can for you and your sweet boy…I will pray. Mari and Jill know how to contact me if I can help in anyway.

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  2. Oh goodness….what a sweet boy. My heart aches for you all. My prayers are with you all. Praying for Bennett’s team, for you and your husband and for Lylah. We love seeing you all at school and dance! 🙂 Please if there is something/anything that can be helpful, we are ready! Praying.
    Erin Johnson (Isla and Gabe’s mom)

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  3. I am Molly Ebersolds sister from Boston. You and your strong little man are an inspiration to any and all who may be facing this same upsetting situation. I don’t know you but from reading your blog i can tell that you have the strength and tenacity of a Mommy that will stop at nothing to keep her baby happy and healthy. My hope is that your love and faith will help you through this bump in the road. My love and prayers from Boston.

    Kathy Lally

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