Day 265, Heavy Hearts

It is with very heavy hearts that we share some difficult news.

Amber is home with us, happy and comfortable. However, after a number of discussions with the doctors, we have come to accept that this disease is progressing extremely rapidly, and there is nothing more that can be done to stop it. She is home with us right now and that is where she will remain until Our Father in Heaven calls her to his home.

We wish we had good news to share, but it is not. In fact, writing this, I am deeply struggling because there are so many raw emotions and thoughts swirling through us — our heads, our hearts, and our bodies — it’s all-consuming of our beings, and of our souls. My being . . . and my soul, was put here on Earth because of my children. I am their mother; their provider, their nurturer, and their protector. And as her parents, this is something that, no matter how hard we tried, we could not protect our child from.

We met with Dr. Gillan and Dr. Martin yesterday (Monday) around 10:30 AM. They brought us into a conference room with a couple of other nurses and a child life specialist. Dr. Martin pulls up the MRI from April on the big screen, which was taken shortly after the first surgery where the original tumor was removed, and then he pulls up the MRI taken this weekend to show us the comparison. The recent MRI will forever be embedded in our minds. Essentially, the entire right side of her brain has been overcome by this disease, this tumor, and the tumor and swelling is now putting pressure on the left part of her brain, skewing and compressing the relatively straight gap that splits the two halves of the brain into a curved hairline. You cannot even see the brain stem or the ventricles, as they have been compressed so significantly. With something like this, an aggressive Grade 4 Glioblastoma, it is hard to say how long Amber has. Dr. Martin indicates most likely days to weeks, but not months.

We’ve had so many doctors over the past few days as well as the doctors at MSK give a surprised “Huh” once they meet Amber, having just reviewed the MRIs before walking in the room, and we now really understand why this is their first word. They all expected to see a little girl in severe pain, barely functioning, and instead find a little girl breathing, talking, smiling, walking, not in pain, and still giving her parents sass like any 7 year old… how is this even medically possible? How is it that she is even still functioning?

Dr Gillan, Dr Martin, and the others at CCMC have learned much about us over the past 265 days, and were prepared to discuss this with us in the way they knew we needed. They were very direct with us, and walked us through what could be considered as options, but explained the downsides of each as they would impact us. The images and records have been reviewed by many doctors at several institutions that we trust, and there is agreement on the options (or lack of) currently available. One option was surgery to remove half of her brain, which is very risky and very likely leaves Amber with a very low quality of life – and, doesn’t cure her of the cancer, just buys more time to find a cure. Another option was to take a chance on another clinical trial, knowing that the trial we did already try was the “most promising” and did not work, and that the only other potentially viable trials will require significant travel, meaning a very high likelihood of Amber leaving this world while she is in a foreign place, nowhere near the people she loves most.

Or, the option that we have chosen – to go home and have her with us, keeping her comfortable and happy, enjoying what time remains with the people who love her. We struggled greatly with this, so much more than I can express here, but have decided that this is the best and only option that makes sense — Home here with her family before going to our ultimate home in Heaven.

Amber is doing well right now. She is very tired, sometimes continues to complain of a mild headache over her right eyebrow that comes and goes, and her right pupil is still a bit larger than her left. The hospital sent us home with anti seizure medicine, steroids, and stomach medicine. Amber might be capable of going to school, but due to her increasing tiredness and not knowing when symptoms may strike, we just feel that it is best for us to be with her at all times. We will have Hospice at our side, and are being educated in pain management. We will make sure she remains happy and comfortable, to the end.

We selfishly want our baby girl to remain here with us on Earth. We know she could change this world for the better. Heaven knows we need that. At first we were mad that what we’ve been praying for didn’t come true; for Amber to be miraculously healed and cured of brain cancer. But perhaps, we actually did have a miracle. Perhaps Amber was supposed to leave us on March 22nd, 2018. But instead, was given an extra 9 months to be with us and to enjoy our time together. And for this time we’ve had, we are truly grateful to God.

Matt and I ask that you still pray for Amber. Pray for her to get through these next days to weeks with comfort and peace, and to embrace the new life that awaits ahead.

73 thoughts on “Day 265, Heavy Hearts

  1. Caron and Matt, I can not imagine myself in your shoes you are as strong and as brave as that supergirl of yours. We will be forever touched but her grace, beauty, spunk and determination. We love you guys. Family is not only what your born into but the people who touched your heart and you all have made a huge impact on ours. Please like family reach out if you need anything. We will continue to pray for Amber and all of you.
    Love The Kunkle Family

  2. Ever since March 22nd we have been praying for you and your family. The prayers will continue, your strength is amazing. Our prayers will storm heaven.

  3. You have glorified and magnified God and God is very pleased with you.
    God will bless you because of this
    God will not be outdone in love and generosity And praise.
    Rest assured of God’s love and care and protection of you and Amber — And the rest assured of my prayers as well.

  4. We are so very sorry. We continue to hold you in our thoughts and prayers so that Amber and your family find comfort , peace and continued strength .

  5. You don’t know me, but Marc Richter is my cousin. I just read this post on facebook…I am so terribly sorry for what your family is going through, and I am heartbroken for you. There are no adequate words, but I pray that God will give you peace beyond understanding, and that all of the precious memories you’ve made together will bring you comfort and strength in the midst of unimaginable pain.

  6. Oh, I’m so, so sorry to hear this sorrowful news. My heart is heavy. I will continue to pray for you your family and especially Amber. May God look over and bless all of you.🙏🙏🙏

  7. There are no words that will ease your pain. Know that we continue to pray for Amber and each of you for continued strength and peace. We are just up the road if you need anything. All our love!

  8. I am having a difficult time putting in to words the thoughts and feelings that I feel for you all right now. While I was only Amber’s teachers for about a month, I learned quickly what a dynamic little girl she was, warm, affectionate, smart and spunky! From reading your latest passage Caron, I see that even you and your family as faithful as faithful can be, struggled with what was happening to your little girl, and I understand that. It is sometimes hard to fathom the ‘why’ behind some things, and this is an easy one to think that of. I am glad to see that you found the positive behind it, you got 9 more months with her and possibly more. I feel blessed to have met Amber and the rest of you. Please know that if you need anything, anything at all, please do not hesitate to let me know. Tell Amber that I am thinking about her and that she is a blessing to all that know her.
    Sincerely,
    Erica L. Coutu
    [email protected]

  9. ✝️🌴 May God give you the strength of a Palm. I was so sorry and sad to read this post. I know that our plans are not always God’s plans. Amber and her journey in this life has touch my heart. 💜 Our time here is but a blink of an eye but eternity is forever. I will continue to pray for your family and that God will reveal to you His purpose for this heartache. Thank you for sharing Amber’s life. She had made a difference in my life and so many others. 💜🌴✝️

  10. Your family is an inspiration to many.
    God bless all of you.
    God always works all to the good, Romans 8:28
    Louise

  11. Russell and I are so absolutely heartbroken for your family. What an incredibly strong, brave, and sweet girl. We are so sorry that you are going through this and send all of our love your way.

  12. You and all your family are in my prayers. I pray that Angels surround you all every moment of the day.

  13. Matt and Family, we am heartbroken over this news. My wife and I will keep your family in our prayers. Please know that, as both a fellow Red Hatter and a credentialed Minister, I am available if you need someone to talk to. May God be with you all during this incredibly difficult time.

  14. I so admire the strength and courage you all are showing… My heart goes out to all of you. I wish I knew some way to make things oh so much better for you all but I don’t. I am here if I can do anything. I will continue to pray for you all. God Bless….

  15. For Amber
    From our daughter Rian we heard of the serious illness of Amber. We followed your blog and admire how you handle this very difficult situation. We wish you strength for the coming period.
    Regards,
    Jan en Rikie Deurenberg
    The Netherlands

  16. I am completely heartbroken. Your family is in my prayers. I pray for Amber to be comfortable and happy and for you ALL to find peace in this crazy, ridiculous, incomprehensible situation. There are just no words to adequately convey what I’d like to say to you.

  17. I cannot even imagine what you are feeling. We have been and will continue to pray our family Rosaries and offer our Masses for Amber and your family. May you find comfort.

  18. My wife and I are praying for the entire family and especially for Amber-such a wonderful child who for the past year always had a loud “Hello Mr. Costello” for me whenever I was in school. I feel blessed to have had any interaction with her-as would anyone else!!

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