Day 191, Big Hope in the Big Apple (and some Big Sadness too)

Amber’s Way continues on, with all fingers pointing towards the West to NYC as we get ready to embark on her next step in fighting this cancer.  Amber has an early morning set up with MSK on Monday to first take an X-Ray of her port, then a Brain and Spinal MRI.  Then on Tuesday, she has her first infusion of the drug pembrolizumab.  We are not sure of the time yet as we have to wait until Monday afternoon for MSK to give us a call when they have a bed available for her on Tuesday.  Initially I was very upset when finding out that we have to go back into NYC for not just one day, but two.  Still trying to get the dampness and exhaustion from Tuesday’s trip out of my bones.  However, for Amber’s sake, we are trying to make the best out of this situation and decided (partly for our own sanity and energy) to spend a couple nights in a hotel (thank goodness for Matt’s hotel points!) and try to see some sights in our down-time.  Of course I’m still freaking out a bit because of her missing school, and us not being home on school nights with after school activities with the other kiddos.  Thank God for grandparents though!

Matt and I pray that we are going the correct way with all of this.  We pray that God’s plan is this one, and that he is gently nudging us towards where we are supposed to be going.  Amber’s Way is God’s Way and we pray for Big Hope in the Big Apple.

 


Matt and I have often written our posts in detail about our Hope and Faith, and other positive things we try to draw from all of this.  But we also feel immense sadness.  We want to share some of that sadness, in very raw truthful detail below.  We know that many are going through this with us, or experiencing this (or something similar) in your own lives and families, and can empathize with the same deep sadness.  This is the emotional highs and lows, spiritually and physically, of an incurable disease that a loved one is battling.


 

I know Matt posted a few days ago about our feelings, but I can’t reiterate it enough. Sometimes, the sadness is all-consuming.  It’s been very emotional and trying on Matt and me.  We honestly struggle every day.  It hurts us so deep for our youngest daughter to have to go through something like this . . . for any child to have to go through something like this.  For Amber though, she is the coolest of cool.  This spunky girl is so laid back and nonchalant about everything it makes me wonder if she honestly understands the severity of what is going on in that little noggin of hers.  And truth be told, yes — yes she does understand it, almost completely, at a six-year old’s level.  When we ask her, she tells us she knows she has cancer, and that she has a tumor regrowing inside her brain.  She tells us how we are going to be making lots of trips to New York to go get medicine to (hopefully) make the tumor go away.  She ‘gets it’ all too well with a mature understanding that is quite remarkable for a (just about) 7 year old.  She gets it all, almost.

One thing that I don’t think she quite grasps OR RATHER, perhaps I am too scared to even ask her, is if she knows that her cancer is deadly.  Ugh, even just writing that word makes my eyes swell with tears.  We’ve talked about death in our house at times, especially when loved ones pass away, which unfortunately for us, is all too recent with the passing of my cousin this past December and the passing of Matt’s younger brother two years ago.   That was tough on the older kids especially, but also understandable for them in the grand scheme of things; there’s life, and then there’s death.  But to have to talk and speak freely about the fact that, according to the research and statistics, Amber is probably going to  . . .  (not survive).  How do we do that?  We’ve talked about it with the older girls (which I’m not sure they even get the magnitude of (yet)) but how does one have THAT conversation with the sick child that is so innocent and young in all of this?  How?  A beautiful little girl who is not so little anymore, growing up before our eyes, even with this behind-the-scenes horribleness growing inside of her.  Amber’s at a point in her life now where the years are more meaningful because they are the youthful years that will stand out and will be remembered.  Great, wonderful, and fun moments and experiences of her life that she will hold in her memory and heart for years to come.  But How?  How to tell her that she’s probably not going to make it past a few more years?  Or that she’ll probably never experience high school or college?  How?  How do we tell her that she’s probably not going to fall in love, and get married, and have her own babies to take care of and love?  How do we tell her this? . . . How?  

I’m not actually looking for anyone to give me answers, because I know when the time comes, Matt and I will figure out what to do.  Really, I’m just venting.  I’m stomping my feet, screaming loudly, and beating my fists against my sides having a grown-up tantrum about why life is so unfair.

Cancer and Death.  That should NEVER EVER have to come up in a conversation with a beautiful innocent child.  The thing that hurts the most is simply knowing all of the good, the beauty, the glory of what Life is — especially with these upcoming milestone years — that she is probably never going to get to experience any of it.  She’s being short-changed a potentially amazing life, and that sucks, big time.

21 thoughts on “Day 191, Big Hope in the Big Apple (and some Big Sadness too)

  1. Raw, emotional, gut-wrenching, and truthful. I can’t even imagine…no, strike that, I CAN imagine it because of Noah and Autumn.

    Just thinking about losing either one of them makes my heart drop out of my chest. Without them in my life, there IS no living. And if Melanie and I (God forbid) ever lose one of them, how–as a parent–can you even think about going on with your life? But you HAVE to…right?…because of the other child(ren). You can’t be selfish in your all-consuming grief. As a parent, you have to continue providing the strength and courage and fortitude, showing the other child(ren) that death is a necessity of life, just as night is needed for day and hate is needed for love.

    You can’t choose what the universe/God/Fate has planned for you, and you can’t stop the inevitable from happening. You can only continue trying to make the right choices for you and yours, and hope that the Big Man in the Sky approves. We all have a reserved ticket for the Afterlife, but it’s how you decide to get there that matters.

    God Bless you both, Caron and Matt, and don’t ever lose sight of the fact that Amber is a beautiful, intelligent, inspiring, and strong-willed PERSON because of YOU. You BOTH helped create her, bringing her beautiful light into this world, and allowing it to shine on so many of our lives. She is an inspiration to us all and a Child of God.

    💜

  2. Cancer SUCKS!
    Maybe all you can do is make the years she does have here on earth amazing for her, for you & Matt, for the whole family.

  3. Caron & Matt, I don’t know you, we’ve never met, but BOY DO I KNOW YOU…I have felt & am feeling every emotion you talk about…..My child is a 34 year old man, with a similar diagnosis….He is still my baby boy & I absolutely melt down every single day…I panic at the thought of losing him….I just cannot understand how or why this happens to people…I, too, have seen some extraordinarily beautiful things happen along this journey. I recognize the gifts & am beyond grateful for them…..I pray for a miracle because I want my son healthy here on Earth. I wanted nothing more than to be a grandmother….that is so not important anymore…I want my son to survive this hideous disease….It is time for the statistics to change & who better to do that than your sweet, beautiful Amber & my sweet, beautiful Justin…Thank you for sharing your journey, it really has helped me a lot on mine….Amber and all of you are in my prayers….One day I would like to meet you….Although Justin lives in Maine, I only live a couple of towns away from you….

    Prayers for all of you in the next stage of the journey….

    Sue
    🙏❤️🙏

  4. Amber is so strong and will never give up the fight. She’s going to fight this disease to the bitter end. Although I’ve only known Amber for a little over a year, she has taught me to live my life to the fullest. Trying not to let what is small compared to what she’s going through get me down. Her hugs, little butterfly kisses (that’s what she’s been giving to me the last couple of days) and hand squeezes have brought so much happiness to me especially this week when I’ve needed them the most. I am so thankful that all of your family have come into mine and my family’s lives.

  5. I went to NYC yesterday and lit a candle at St. Patrick Cathedral for Amber and your family. I took a picture but don’t know how to upload it here. Keeping you all in my prayers that God shines his light and mercy on you.

  6. I am constantly in awe of the eloquence with which you and Matt share your news and feelings. As always our hearts are with you, Amber and the whole family.

  7. My heart is ripped to shreds for you all. I admire you for your strength and it is that whether you recognize it or not. I pray for many more years for you and yours and Amber❤️❤️❤️

  8. We continue to keep all of you in our thoughts & prayers! We send positive, healing vibes your way!
    ❤ Russell & family

  9. Bless you for sharing your raw, honest feelings. They need to be expressed. We pray for Amber, and her family and all those involved in lhe care of Amber.

  10. Dear Caron and Matt,
    Thank you for your heartfelt post. My heart goes out to you on this very difficult journey that you have with Amber, not knowing the outcome of all of this. Amber is such a wonderful child with such great spirit. Please know that you are in my prayers daily and I pray for a miracle every day. You are one beautiful, strong, and loving family!!

  11. Sending you lots of love and prayers! Good luck on Monday and Tuesday. Hopefully this process works for Amber. You and Matt are doing a awesome job. Meg and I are here for you , Matt and the kids! If you need anything let us know !

  12. I have no words… sending hugs … tight hugs… to you all…. prayers…. prayers of hope, peace, and strength… (although, I don’t know anyone more strong than our sweet Amber and her amazing parents)! ❤️

  13. 🌻✝️ Praying God will calm your fears and bring complete healing to Amber. May your faith grow each day through this cross you must bear. Thank you Jesus for helping to guide the direction of Amber’s care.

    Oh Lord, please bless Amber with Your grace and mercy. Give her strength to beat this cancer so that she will be a guiding light for others who may need your healing touch. 🌻✝️

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