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Cycle 5

So  brianas last admission will be tommorow! She will finish up cycle 5 of immunotherapy. Cycle 6 will be out-patient and at home meds! We are so proud of Bri! I cant even put into words how far she has come, not just with treatment but with being a toddler and  learning patience after MANY, MANY hours of waiting in exam rooms or waiting rooms or pharmacy lines. She has missed out on a lot of childhood normalcy in this last year but she has also had to grow up very quickly. And we couldn’t be more proud with how smart, loving, caring, polite (when shes not on steroids or accutane lol)  she has already proven to be. She doesn’t even need to be told to stick her arm out for blood pressure, or open her mouth for temp, she can now take all her meds by mouth, she even takes her shot like a big girl! I can go on and on about how amazing she is and how excited we are for the "end of treatment" to be so close. But the raw honest truth is, its absolutely terrifying. Its not even close to the "end" of treatment. This cancer isnt considered to be in remission until the five year mark, because honestly it can show back up at anytime. Neuroblastoma isnt just a tumor you can remove and its gone, all it takes is one tiny immature cell in her body that decides NOT to mature like it is supposed to and RELAPSE. Which I have to believe are harder words to hear than cancer. I cant imagine having to start over again. We have already promised her only ONE more week in the hospital,  no more feeling yucky all the time, no more tubies, etc. We can only pray and trust in God that we will never hear the word relapse. We stay as positive as we can, but that doesn’t stop that horribly scary voice in the back of your mind from thinking WHAT IF…. I try and keep all of the posts on this page factual and positive. But I just need to say that if you have never had a child in your family with cancer, you don’t understand how horrific it is. Some things we have heard, seen, or had to do on 6A (pediatric cancer pod) will forever be burned in our minds. The kids screaming and  moaning in pain or out of fear, the parents crying in the hallway after being told to go home on hospice, being at a toddlers funeral! I wont go in  to more detail because its to hard to even write or think about, but parents and children are living this everyday and they shouldn’t be! So all we can do is just keep fighting for our children. Its very easy to take things for granted daily. I know how hard it is to keep my patience with Bri sometimes especially when her meds cause terrible mood swings, but then I feel guilty for being angry with her because I know there are so many parents that would do anything to have their child back here on earth even for a second. So just hug and love on your kids and family!! Life is to precious and short.

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Comments (5)

  • Judy Bolyard
    Judy Bolyard

    God bless and be with you all!!! Prayers never ending!!

    11 months ago · Reply
  • Edi Worthington-Platt
    Edi Worthington-Platt

    Beautiful testimonial. Bri will remain in my prayers.

    11 months ago · Reply
  • Teddy Haas
    Teddy Haas

    We will keep on praying and praying! God bless you all!

    11 months ago · Reply
  • David A. Wildermuth
    David A. Wildermuth

    Dear Matt and Ashely, My heart breaks when I read your fears. God has a plan for you and Briana. We have been so inspired by this young tiger and your faith and commitment that we will be with you all the way. Our prayers now are that you will finally enjoy her childhood days and trust that He will provide. We love you and will always support you!

    11 months ago · Reply
  • Regi Cagle
    Regi Cagle

    These are such strong and honest words. Even in times of weakness, you are even stronger than you can imagine. Continued strength, Prayers and love to all. You are surrounded by God's light and that of friends and family.

    11 months ago · Reply

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