I always considered myself a strong person. I faced every hurdle that came my way without hesitation, and with courage and hope. I live a life with Ankylosing Spondylitis so every day can present a new adventure. To be honest, I wasn’t sure when I started this post if I was ready to share something that has consumed so much of my life recently. I was wrestling with the question if I was exposing to much. I realized if I have learned anything from having a chronic illness, it is never good to keep emotions bottled up. This new issue wasn’t even AS related, and those with AS know, this is a rarity for us. I thought if at least 1 person could relate to the crazy roller coaster ride I’m on and can find some relief in knowing they are not alone, it would all be worth me sharing this story. I am so used to hiding behind my smile due to AS, but this new test was more than my face could shield.

My story starts about 3 1/2 weeks ago. I really was in a happy place. It finally seemed as if everything was on the up and up for my little family. My AS medicine seemed to be doing the trick, we were settling into our new home and enjoying summer. Then all of the sudden, our world was turned upside down. We found out my daughter would have to face a huge challenge and she was only 12 years old. The doctor found a mass on a MRI and they told me she had cancer. They believed at the time it was of the muscle (Rhabdomyosarcoma), near the orbit of her left eye. When I heard that word from the doctor I literally felt like I was spinning downward. I had to sit down, catch my breathe, and walk back to the room where my daughter sat with no idea of what news was about to be delivered. I knew now more than ever no matter what emotions I was feeling I had to be strong for her. We walked in and she sat there with the innocence I had always wanted to keep for her, within seconds we would give news that would change her forever. I took a deep breathe as the doctor shared the finding with her. As tears poured from her confused eyes, all I could do was hug her and tell her she could win this fight. It wouldn’t be easy, but I would be by her side. My heart was breaking for her and this was something I couldn’t make all better. I was her mother, I was supposed to protect her from bad things and this demon that popped up had no idea who it was about to challenge. We would conquer. The wonderful doctors that cared for Alexandra were as aggressive as my mind set was so we instantly hit it off. Within days she was scheduled for her biopsy. We went to the hospital and she was so brave. A young girl who had never had surgery hid her fear with the smile I displayed for so many years. I saw so much of myself in her. You hear these horrible stories of other people’s kids and your heart aches for them, but you never expect it to happen to your own child. It was a nightmare I couldn’t wake up from. The biopsy was supposed to take 45 minutes and as I watched the clock and the 2 hour mark hit, I started to wonder what was going on. Were they able to take out the mass? This could be good that it’s taking longer. Then the doctor walked out, his head down and my fear set in. He told us that the good news was, most likely, it’s a vascular tumor and not muscular. He said in most cases this is a benign tumor, but we would not know for sure until we got the pathology report back. As we began to be happy, he began telling us about how she was bleeding horribly during the surgery (which is why it was taking so long) and they were not able to get all the biopsies they had hoped. They would have to depend on the 1 they did get to find out if it was malignant or benign. He then began rattling the list of things that could happen if we do not act soon. She could face blindness, life threatening surgery, internal bleeding and as he kept talking I went numb. I couldn’t hear anything he was saying. All I could think was…is this the good news?? This is MY daughter, not someone else. She has to be okay. He promised us he would get her through this fight. The doctors were very thorough by doing 3 pathology reports. It was benign! They diagnosed her with Lymphangioma, which is a vascular tumor of the blood vessels. They said she was definitely not textbook as how it presented itself, but we were all relieved she would not have to battle a malignant cancer. She has quite the long, challenging road in front of her, but we will get through this together with hope and a positive attitude. She will face many tests, treatments and surgeries, but I have seen her bravery and I know she can conquer anything that is thrown her way. She is her mother’s daughter. We do not take NO for an answer!

Through this nightmare I have been reminded to appreciate the little things in life. I learned how precious each moment can be with my children. The important role that the power of prayer, hope and faith play when it feels as if your world is crashing down. I learned what it means to have the right support system in place for my family. I know I should conquer what I can, but at the same time, know that some things are beyond my control. I was used to medical issues for myself, but when it comes to your child, it’s a whole other ball game. I have learned that my daughter, at the young age of 12, is one of the strongest people I know. She is facing so much unknown ahead, and is doing it with the courage of someone 3 times her age. She has already decided this new challenge will not stop her from doing all the things she plans in the year ahead. Her strength and hope to conquer what she can is simply inspiring. I will protect her with every ounce of strength I have in my body and soul. I may not be able to make this bad experience go away, but I can help her stay positive. I tease her about being an AmeriCAN, but in this instance, it is extremely important for me to continually remind her that she is stronger than any health hurdle that will present itself. She may have to live with a tumor, but she never has to live for it!



  • Jennifer L. says:

    Oh Amanda! Prayers for your sweet girl. What a curve ball life has thrown your way. Prayers, prayers and more prayers. Please keep us posted. You are cared about very much, as is your family.


  • Michele says:

    Tear…I love you guys! I am so grateful having u in my life and to be going through your whole life’s journey with you side by side. We have been friends now for over 20 years and I have to admit, Alexandra having to go through all of this hit me pretty hard. It’s as if my own child is going through this…and I feel so helpless sometimes being so far away. You know u can ALWAYS count on me for support or for a shoulder. When u don’t have it in you to be strong at that moment or u just don’t want to…I PROMISE to always hold u up. I will never let u fall and NEVER let u go through anything alone. Bassy…u are stuck with me forever and ever…amen! And I would never want it any other way!

  • Mary Beth says:

    I’m so glad you shared this story. You are so strong, and Alexandra is her Mother’s Daughter! I am so proud of both of you. I will contiue to pray for complete healing for Alexandra, and for you : ) Now go do some yoga!!


  • Cookie says:

    Dear Amanda,
    I know that our friendship has just began, but please keep me in mind anytime you need someone to vent to or a shoulder to cry on. My grandson was born blind, suffering from a rare terminal illness. So I understand the fears and hurdles of dealing with this. I have a closed mouth, big ears and a loving heart that you are welcome to anytime night or day. If ever needed please email and I will be happy to give you my number so you can have a shoulder to cry on. Sometimes it is easier to let our fears out with someone you don’t have to be strong for. I have battled cancer five times along with AS. so I am here any time you need a friend. Remember to tell your daughter it is GOD’s destiny she is to fulfill, not the doctor’s. Best wishes and much courage and faith and love being sent your way.

  • Sandy says:

    Your writing is so strong, powerful and inspirational. I hate that Alexandra, you and your family are now going through this horrible battle…but as you said…you are all SO strong, and I know you will all make it through this. I’m sorry we aren’t closer (in distance), but that will only keep us so far apart. I know I don’t have to tell you, but please don’t you dare hesitate to call me at anytime day or night if you need anything! I am here for you now, just as I was 30 years ago! This hurts so bad because, I love you and your family (my 2nd family) so much!! Continue to stay strong and positive, and lean on your friends and family to be able to keep you strong and positive….that’s what we are for! LOVE YOU!

  • lisa says:

    I hear every word you are saying. Thank you so much for sharing.

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