The diagnosis

I am beautiful, talented, and the best mom and wife ever!

My husband wrote that above as he was helping me set up this blog and well, how could I delete it?! Truth be told, he is the greatest husband ever.

About four months ago I started having really painful headaches but they would come and go so I didn’t think too much of it. I chalked it up to a migraine or the fact that I probably had too much wine. They would last a few minutes and then go away. Sometimes they would come back a few minutes later and other times it would be a week. It wasn’t until January that they returned and just didn’t stop. it got to a point where I would curl up in a ball in bed for hours in tears because of how intense the pain was. And by this point they were daily. I finally convinced myself that I needed to go to the doctor. When I first went in they didn’t give me too many answers except that it wasn’t a migraine. So I did a CT and it came back normal. Well, mostly normal. They said I had a venous angioma but it wasn’t anything to worry about. The following week I went back in for a follow up and they still had no idea what was going on  so from there I was sent to a neurologist. After meeting with the neurologist I finally felt like we knew what was going on. He said he believed I had what was called “Hemicrania continua”which is just a fancy way of saying continuous headaches. He prescribed me some meds, gave me some shots to the temple (which are not pleasant) and I thought that was that. He decided to send me to get an MRI just in case because we would rather be safe than sorry. Sure, no big deal. Went in for the MRI, hated it and left saying “good thing I wont have to do that again.” hah. It wasn’t even 3 hours later that we got the call from my neurologist saying that I needed to come in immediately because they found something on my scan and that it would be best for me to have someone with me. I knew right then and there that this was bad. My heart sank and I just broke down. It felt like some tragic movie.

Sitting in the waiting room for those results was so agonizing. I had no idea what they were going to tell us. Finally they called us back. He pulled up my scans and then we saw it. Right smack dab in the middle of my brain. A lesion. That’s what he first told us it was. A lesion doesn’t sound so bad. That sounds repairable. but he handed me my paper to leave and it said tumor. I had a brain tumor. Well this definitely wasn’t a part of the plan. That night I did what every doctor tells you not to do and I got on google and started researching brain tumors and locations and survival rates. I actually found a lot of good information and felt hopeful. The chances of it being benign were so much higher than it being cancer. So that made me feel a little better.

The next step was to meet with a neurosurgeon which was 2 days later. We felt hopeful going into our meeting with her. When we met with her I could immediately feel  the severity of this and she told us I needed to be  admitted to the hospital that night. In my head all I could think was “well that escalated quickly.” We left her office feeling so hopeless. Instead of going straight to the hospital we decided to go home and have some family time. We knew our world was being turned upside down and in that moment all i wanted was to be with Michael and Sarah. it was such a beautiful evening. We went on a walk to our neighborhood pond, had a picnic together and drank wine while we watched the sunset. It was truly a perfect evening. It was so wonderful having a sense of normalcy before the storm.

That night we went to our local hospital and I was admitted. Over the next 24 hours I was poked and prodded, given more medications than I can remember, had even more scans done. Everything was just happening so fast. They were pressing to do some pretty invasive tests when we decided (with some help and assistance from our family members who work inn the medical field) to press the brakes and seek help at a different hospital. As much as I love where we live, it’s not the place I want working on my brain. So we were discharged and headed to another hospital for a second opinion. It took a few days to get an appointment but considering it usually takes weeks we were very lucky to get in when we did. This new neurosurgeon gave us so much hope. She believed this was something very treatable and although she couldn’t guarantee anything, she said she believed that I was more likely to die of Alzheimer’s than this. Hearing that brought us so much relief. She scheduled me for a biopsy 5 days out and from that we would have a final diagnosis and could set up a treatment plan from there.

The biopsy was an experience. When I showed up at the hospital, they took me upstairs to pre op and put a halo on  my head. For those of you who don’t know what that is, it’s an intense piece of head gear that they screw into your head. Literally. They screwed this thing into my head in four places. It definitely ranks in my top 5 least favorite things I’ve ever done. After the screwed this into my head, they strapped me to a table and started pumping me with medications to calm me down and put me to sleep, or I thought. As it turns out, all anesthesia doesn’t put you to sleep. So for my brain surgery, I was awake. The entire time. I handled it well in  the moment because the drugs were good, but man. It was not something I would want to do again  and from the sounds of it, I won’t need to. Despite the location they were able to get two small samples of my tumor to send off to pathology. Now we just had to wait for the results.


After my surgery, while waiting in recovery, we met with a neuro oncologist. I didn’t think we would get any sort of news until the pathology report came back, but he was able to give us some information. He told us that I had cancer. Not only did  I have cancer, but I had an aggressive type of brain cancer and that the pathology report would tell us how serious it was. I don’t think I have ever felt so hopeless or defeated than I did in that moment. He mentioned I may be able to have a laser surgery to help kill some of the cancer cells but they would have to meet to see if I was a candidate for it. Fast forward 3 days and we have a diagnosis. He told us that on a grade of I-IV I had a grade IV Glioblastoma tumor. The worst. And because of the location and the risk, it was inoperable. Cool. So I have the worst kind of cancer in the worst place possible. Awesome. I would be lying if I said I wasn’t devastated by this news. Hearing that statistically I have 15 months to live is just heart breaking. I’m only 27 years old, I have a beautiful 2 year old daughter and I love my husband more than anything on this earth. How could this be happening!?

The couple of days leading up to now we have been in shock. I have definitely had times of sadness and anger but now that the shock is wearing off, I’m starting to feel more like my happy self. I’ve come to realize that I just have to take everything one day at a time. I can’t dwell on the what if’s because if I do, I wont enjoy the moments that I have now. And even though the odds aren’t in my favor, I know that nothing is too big for God. He is with us and I know that he will see us through.

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93 thoughts on “The diagnosis

  1. This prayer for you and your family : God Father we pray for a healing miracle through the power of your Son’s Holy Name, Jesus Christ! ❤❤🙏🏻 The Perrin family is holding you up in this prayer.

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  2. I don’t know you, but saw a post of your blog on a friend’s Facebook. I’m praying for your healing and strength through this.
    “Then your light will break forth like the dawn. And your healing will quickly appear; Then your righteousness will go before you, And the glory of the LORD will be your red guard.” ISAIAH 58:8

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  3. Thank you for sharing your journey with us. We are praying for you. Love you friend. Michael is right btw. You are an awesome wife, mom, friend, and amazing person.

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  4. We don’t know each other, but have many mutual friends. In fact, as you moved from VA to FL, we did the opposite. When we joined Immaculate Conception parish, I was asked by several people if I knew you. 🙂 Now, I feel a like I do a little.

    While my husband was CC of the 325 TRSS one of our members was diagnosed with Stage IV Glioblastoma at the base of his brain. The following year my stepdad was diagnosed with the same behind his left temple. I won’t lie and say it is not a difficult road, but you are young and strong and will overcome.

    My family will be praying for you and your family.

    Liked by 1 person

  5. Praying…peace, Hope and most of all HIS will! Your story hits home on so many levels. My Mom had cancer, my sister in law had a brain tumor and my daughter has a tramtic brain injury. All I know is God is good even when we are sad, mad and hurting. He is GOOD. LOve and Hugs from our family to YOurs!!!

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  6. Hello there….as some of the others have shared, I don’t know you personally, but Amanda Newman does, and she cares very much for you and your family. As you know, Amanda will soon be wed to Kyle Reynolds, my (very handsome) Grandson. Amanda has asked us all to be in prayer for you, and that is something we are very good at, and very willing, too! We serve the same God, and we know that He will be with you through this whole journey. He keeps reminding me of one scripture…Jeremiah 29:11…”For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you HOPE and a future.” God does not forget His people, so I pray that He remembers you and hears you when you call upon Him for His help in your time of need….God is the ultimate source of the best and the worst! Prayer will change you completely…..and we are all in this prayer vigil with you. Prayers for your strength in this difficult time. Blessings, in the name of Jesus Christ, our Redeemed and friend. Pat Schofield

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  7. Hi Stephanie,

    I am Kelly McDaniel’s mom. I have actually met you before at Dina’s or Dodie’s. My husband, Frank Di Fiore, and I and our Sunday School class are praying for you and your family. As well, as Kelly mentioned before, our extended families are praying, also. You are receiving prayer from all over! May “The Lord bless you and keep you; The Lord make His face shine upon you, And be gracious to you; The Lord lift up His countenance upon you, And give you peace.” Numbers 6:24-26 NKJV.

    Our Love and Prayers, as Kelly said, without ceasing!
    Susan Di Fiore and families

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  8. Stephanie….it’s Sue Bechtol, a member at St. Mary. I always went to 6:00 pm mass on Sundays, since I knew you would be singing. I had tears in my eyes as I read your blog. Please know that God performs miracles every day and you are on LOTS of prayer lists for that to happen.

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  9. Someone i work with forwarded this to me

    I am a neurosurgeon who specializes in glioma surgery.

    About 50% of my patients have been told their Tumor is inoperable and while that is occasionally true ..
    It usually is not and in many cases we have removed tumors deemed inoperable safely.

    Surgery does not cure gbm but its a key part of having a good outcome for several reasons. I would be happy to look at your films and offer an opinion

    Liked by 1 person

  10. Stephanie, thanks so much for sharing your story. There is much to learn here for anyone reading. You don’t know me, but I am in the Toast of Tampa Chorus with Karen. I will watch for your posts and will continue praying for healing and continued strength for you and your family.

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  11. Wow. That’s all I can say. You are so courageous, and Michael is right, you are a wonderful mom and wife, I can just tell. 🙂

    Praying for you. Thanks for sharing your story with us.

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  12. Stephanie,
    You don’t know me, I’m a friend of Tara’s, I was amazed and touched by your strength while sharing your story. I believe in the power of prayer and will lift you and your family up in my prayers.

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  13. At our church, we pray, “For these intentions and all we hold in our hearts…”

    Stephanie, it was beautiful to hear your name spontaneously coming forth from many lips this weekend…
    And while we are praying, I also realized that when we say your name, we really mean the three- you, Michael and Sarah.

    Your blog is creating a ripple effect in prayer. As people share your blog on FB, it opens many others who you do not know to include you in their prayers. For in this moment of time, it reminds us of our humanity -fragility in body with strength and courage in mind and heart. How perfect to title your entry with FAITH, HOPE AND LOVE…

    God holds you, Michael and Sarah in the palm of his hand… ❤🎵❤🎵❤

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  14. In the name of Jesus Christ, I release full healing into your brain. Specifically the area of your brain where this tumor is; down to the molecular level, be healed in Jesus name.
    We rebuke that tumor and command it to be gone.
    Holy Spirit fill up Stephanie with your presence, with peace and with the love of the Father.
    Angels assigned to Stephanie and her family; guard that place where she’s at and continue to establish and maintain the presence of heaven, keeping all unclean spirits out, in Jesus holy name. I rebuke cancer and declare you have no sway or power in Stephanie’s life.
    Holy Spirit, more of your peace, your healing presence and love.

    My name is Lawrence and believe God wants to heal you. Let me know if you’d like me to call and pray with y’all.
    watersword7@gmail.com

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  15. Stephanie, I’m so sorry you guys are going through this. I know God loves you and your family! We are praying for you. All our best! We are thinking of you and have great hope!

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  16. Stephanie, my name is Erika Yepes and I am Alison’s aunt in Thailand. Please know that you will be included in the prayer book at Our Lady of Mercy in Nonthaburi, and our Faith Formation team will be praying for you and your family. Sending prayers and love from Bangkok.

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  17. Stephanie, this is Lynda Pasternak I live near your Mom & Dad. Was praying for better news and will keep the prayers coming for you and your family. Stay strong and may God bless you and your family.

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  18. Stephanie, I am speechless. I can’t imagine anything you’re going through. I’m praying for a miracle of healing. God can do anything! I’m so sorry you’re going through this. Thank you for letting us all know. Let us know how we can specifically pray for you.

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  19. Stephanie, I saw your blog on Renee Dallaire Eckert’s page and after reading it, I must ask what do you mean you aren’t a good writer?? I am moved and in awe of your bravery and honesty. You and your family you have built are beautiful.

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  20. Stephanie you do not know me. I am part of a prayer group that your prayer request and blog link came to. My husband battles on, not the same cancer but you are now at the top of our list. I’ve sent your blog to all our prayer warriors across the country. We have found the chaplet of Divine Mercy to be so very powerful. We will start the the novena for you today and will pray the chaplet for you by name. Put your name at the foot of Mary undoer if Knots.
    Christ’s peace, Christ’s mercy.
    Gods blessing
    Loretta Hinger

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  21. Good Morning Stephanie, My sister works with brain cancer clinical trials research protocols. Presently , the current one she is working with is closed to enrollment but wants you to know that there are many out there. Without knowing the specifics about your circumstances she is limited as to how to direct you but states that you should go to ClinicalTrials.gov. All clinical research has to be listed on that website and whether or not they are still enrolling subjects, closed to accrual, etc. She said living in Florida will provide you with many research centers. She is also holding you in prayer..Let me know if you any any questions for her or if there is anything else I can do. Love and blessings to all of you.

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  22. Stephanie, I met you as a little girl playing with my niece Amanda. I am praying for you everyday. i believe in miracles and hope with all my heart you get one. Follow every chance you can. Dont ever give up.

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  23. Stephanie and Michael,
    Words can’t express how much I want to see you in person just to give you all a big bear hug and tell you everything is going to be okay. Because truthfully, I believe that everything WILL be okay and that God will see you through. God can do the impossible. We love each of you so much and just want you to know that we are praying for you on a 54-day rosary novena. Please feel free to send us any and all intentions that we may offer up for you (Michael and I are friends). May God give you strength, courage, perseverance and most of all hope.

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  24. Hi Stephanie, we don’t know each other but I saw this blog post shared on the MCCW page. Please know I am among the many praying for you. I’m so sorry you are going through this. God bless you and your sweet family. ❤️

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  25. Stephanie, You and your family are in my daily prayers, and you are remembered at Mass and adoration time. Praying for you to be healed!

    Blessings
    Lisa

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  26. Sending you many thoughts and prayers and will continue to be praying for you. If you want to look into alternative medicine at all, I recently have watched and followed the truth about cancer series on facebook and it has changed my life, all 9 of his videos can be watched online or ordered . I Will be praying for you and your family. Cherish every moment with your sweet family God Bless

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  27. A friend shared this in her timeline asking for prayers.

    I loved you guys the second I saw that photo about halfway through, because that’s what courage looks like. As does the act of writing this story.

    I hope you won’t stop writing. Turning thoughts and feelings into words has unique way of creating order from chaos and turning life’s hardest things into ultra-power gifts for other people who need them.

    And all because you took the stuff most people hide on the inside of themselves and shared it with others.

    Thank you for hitting that Publish button.

    It mattered.

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  28. Dear Heavenly Father,
    Please Bless Stephanie and her family with Your Holy Spirit. Be with her as she undergoes treatment. Guide the medical staff to do everything they can for Stephanie and extend Your healing hand to make her well. Father God, please use Your Devine Power to heal Stephanie, and keep her family strong. We ask for these Blessing in Christ’s Name. Amen

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  29. Hi Stephanie,

    It’s Ellen Ratti from St. Mary of the Assumption in Springboro. Jim and I were heartbroken to hear of your diagnosis but so glad that you have God, your family (especially Michael & your beautiful daughter) and your friends on your side. All of us here at St. Mary are praying hard for you and your family; we remember our time with you with great love and thanksgiving.

    May God bless you abundantly and hold you close in his loving arms,
    Jim & Ellen Ratti

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  30. Stephanie,
    This is Crystal Dawn’s dad. Her mother, Pam, and I have been praying for you and your family. We are looking forward to seeing your interview tomorrow night. It is exciting to see God’s grace and love supporting you in this trial!

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  31. Hi Stephanie,
    I saw an article on People and felt compelled to reach out. I have an acquaintance who was 19 years old when she was diagnosed with the same exact tumor as you, she is 21 now. She had her surgery at MGH in Boston and was also given a poor outcome. She is, from my understanding, “cancer free” now as well. I think it would be really cool for you both to connect if you wanted to talk to someone going through the same exact thing as you. I know she was doing a lot of homeopathic remedies as well to shrink her tumor post surgery (she was also left with a small amount of her tumor after removal).
    You can tell her an old friend put you in touch.
    Will keep you and your family in my thoughts and prayers

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  32. You are amazing!! Having been touched b y glioblastoma (my mom, aunt, best friend, and presently.my sister,I am astounded by all that you endure. Your strength is overwhelming. MY prayers and best wishes are with you for all of the days of your.life❤

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