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, Matt, Brianna, Marie, Ryan and Amber, you continue to be in our prayers. I’m so very sorry.

  2. Your cross is the heaviest burden a parent can carry. I am so saddened by this. Find in your heart to ask God to help you in your hour of greatest need.

  3. This is heartbreaking for you all. Thinking of you and praying. May Amber be as comfortable as possible. 💚

  4. Sending as many prayers as the universe can hold. If there is anything you need please don’t hesitate to ask. We love you all very much.

  5. Caron,
    I am so sorry to hear this. May you and Matt find peace and calmness in these coming days. I am sorry I haven’t been a good friend and stayed in touch. As a father of a 6 and 3 year old girls this tears me apart.

  6. So sorry to hear. Continued prayers from us. All of our love to you, Amber, and your entire family.

  7. Caron and Matt words seem inadequate to describe how deeply saddened I was to read this news about Amber. I am so very sorry …. please know we will continue to pray for her and for you and your family for God to give you all the strength to get through this most difficult time. It takes courage, bravery, deep love and unwavering faith to make the decision you have made for Amber…. God placed this beautiful child into the right arms when he sent her to you. I just wish God’s plan included more time for Amber here on earth within your arms. Much love strength and peace to you all.🙏🏼💔

  8. Caron and Matt,
    Words can not express how I feel right now. My family and I will continue to pray for all of you. Please know that if there is ANYTHING that we can do for you, please do not hesitate to ask.

  9. Oh Caron, Matt, I have grown to love you and Amber and the rest of your family, the doctors and nurses and other medical professionals who have walked this difficult road with you. I pray for you and for healing… Of the heartbreak and the pain you are going through. May the Lord and His Holy Mother and all the Angels hold you and give you strength.

  10. Caron and Matt…
    All I can say is that our prayers are surrounding you, your family, and especially Amber.

  11. Caron and Matt,
    I’m so very sorry to hear this, and my thoughts and prayers are with you and Amber. May God give you strength and comfort during the precious time that you have together, and know that you are surrounded with love. If you need anything, please let us know.

  12. Matt, Caron, my heart is just heavy for you. 💔 I’m praying for your strength and for mercy yet again! I’m here for you anytime you need reprieve. It would seriously be an honor. I love your kids and my heart hurts for them too so much. Amber, you are loved by so many people. I love you kiddo. I’m praying for God to watch over you and carry you during this time. Matt, Caron, I will be in constant prayer for her comfort and good pain management as you care daily for her. Loads of Love. Donna Anderson

  13. Our hearts are breaking with yours, beside yours. I want to scream, to cry out, but you two are stronger and wiser so we’ll take your lead and thank God for the blessings and miracles you’ve seen already. We pray for strength, for peace, for comfort and for patience for now, down the path your family walks and until we are ultimately united in Heaven.

  14. Hi Matt & Car on,
    How I have been praying, hoping, begging that Amber’s cancer would have left her body after the treatments that she has bravely undergone this past year and that all of your family has also been through. I lost my best friend to cancer of the brain back in 1997 and I prayed that no one that I had ever met would ever have to go through what he went through, especially a beautiful young girl such as Amber who is from such a loving,caring family as yours.
    I just got home from my hospital stay and read your recent Amber’s way and it was all I could do was to finish reading what you wrote.
    The doctors layed out you’re options and no one can tell you what to do but to make Amber as comfortable as possible for what ever length of time when there are no other real choices is the most difficult decision to make yet the most loving humane medical treatment that anyone could ask for.
    No one knows how long anyone is on this earth and unfortunately Amber’s time with all of us may not be as long as we all hoped and prayed for, so to enjoy your love for each other is never wrong. As the doctors and Hospice have explained, they will be there for you and Amber while you are there for each other,for what ever period of time Amber can be with you. With Hospices help, you will be allowing the most loving, humane and dignified way for Amber to be with you.
    Please know that you have so many friends who will help you and your family, most of all to help Amber in anything that we can do for you, errands, driving all of you to where ever you have to be or just sitting and listening to you and Amber as you talk about what ever is on your minds or reading to Amber,etc. Just call us,we are only 10 minutes away.

  15. I am so sad to hear that, our faculty will continue to pray for all of you. Please keep us informed & if you need anything, do not hesitate to call us- Luis Pabon Dance Arts Centre.

  16. Karen & Family, as I read your blog I am balling and reminising how painful it was for me and my family when my 13 year old brother had lymphoma and passed at the age of 13 in 1973. Although your story is a bit different the story, emotions and pain is the same. She knows she is loved and many people will be praying for her including my family. God Bless ❤️🙏🙏

  17. Caron and Matt,
    There are no words to express how very sorry we are to hear this news. Please know that we commend you both for handling this with such grace and dignity for Amber and your family. She has been very lucky to have you both in her corner doing what is best for her. We continue to pray for you her parents, for Amber and your entire family with hope that you can spend the rest of her time together in peace. God Bless all of you!
    Much love from Angela, Bill and Benjamin

  18. Caron and Matt, and girls….words seem so empty right now, trying to send comfort and hugs on a screen….you are LOVED and prayed for and cried with and held in deepest and dearest tenderness for the journey you are on together. Your reliance on God in the most difficult circumstances and the grace you exemplify even being honest about the anger, the tears and the thoughts you’ve had arriving at the decision you’ve made for the next season you face is a powerful encouragement to others going through their own struggles. May God continue to keep you all in the palm of His hand and give you His peace that truly does transcend human understanding. …and I pray with all my heart that Amber continues to be as painfree as possible ….. we love you!

  19. My heart is hurting. I’m wishing you all peace in this next step of your journey. Sending all of my love and prayers!

  20. Caron, I am so sorry to hear this. I totally believe you are doing the right thing and have made the right decision. God is in charge of her time here and I pray however time that is, will be blessed for your family. It is Christmas season. Do it up big. My family and church and youth group will continue to pray for a miracle. We love you and thankyou for being so transparent and vulnerable. Your strength during this trial so far has been amazing. God certainly did pick the best parents for Amber. You and Matt are her true superheroes.
    God bless you! ♡♡♡♡♡

  21. Words cannot describe how we are feeling for all of you right now. We wish you all comfort & peace. Continuing prayers for you all.

  22. My heart breaks. I am praying for peace and comfort for all of you. Your grace and strength through this unimaginable time is an inspiration to us all 💜

  23. Caron, Matt and family, our love and prayers are with you during this unimaginable trial. We have been blessed to have been included in this journey with you. We pray that our Heavenly Father will carry you through these days and that Amber will spared pain and suffering. Goodness, words are so inadequate to truly convey our sorrow that you must bear this. We cry with you. We hold you in love and prayers.

  24. Dear Smith family, our hearts are broken as we read this entry. Words escape us. Please know you are in our prayers and thoughts and will continue to remain there. We pray for Amber to enjoy this season with you and that she will remain happy and pain free. We also pray for your other children and the two of you to remain strong for each other. Your acceptance of God’ s will is amazing. We feel such sadness as parents ourselves and look towards your inspiration as you
    remain kind and graceful. God bless you all in these hours and days of need.

  25. We will pray for comfort and peace, and to embrace the new life that awaits ahead. ❤️
    The Cahills

  26. I am so sorry to hear this news; it is heartbreaking and infuriating at the same time. You have made the best choices for Amber throughout this journey. She belongs at home, with everyone she loves, in her comfortable place. I will be praying for all of you and I hope that you can spend this time with Amber doing wonderful things; hugging, laughing at a funny movie, baking cookies, just being together.

  27. Matt: I am heartbroken over this sad update.
    As you know, I have been in the exact same difficult place and I know the pain all too well.
    Amber and your family are in my prayers.

  28. Caron, Matt and family – our hearts are breaking at the cross you are all being asked to bear. We are sending prayers to all of you for comfort, peace and strength.

  29. Matt and Caron, I know that this is heartbreaking news about little Amber. I can only pray and know that God will give you the grace that you need on this very difficult journey. My heart goes out to you and your family. As always, all of you are in my prayers and in the prayers of all of the Sisters of Charity daily.

  30. I’m so sorry. My heart breaks for you. May God give Amber comfort and you strength during this time.🙏💔

  31. We are so very sorry this is so heartbreaking. Remember God will be by your side in this greatest time of need. We will be thinking and praying for you all.

  32. So sorry to hear this terrible news. I know it must be difficult for your entire family to endure. Praying for Amber’s suffering to be minimized as she goes through this.

  33. Caron & Matt,
    May the time left to be with your Amber and family together now and after be surrounded by God’s pure light.
    She will always be your angel 🙏🏻
    Sincere prayers.

  34. I ache with you and want to say my will be done, work a miracle.
    I pray you continue to say God’s will be done. Amber will always be your light in the darkness. Amber is the WAY leading us all Home.
    Sister Rita

  35. What an incredible hard decision to make…
    Our hearts ache with yours for being so powerless. We pray your strength and love carries you through it all, one step at a time.

  36. Matt, my thoughts and prayers are with you. Wish I had words to help ease your pain.

  37. Dear Matt and Caron,
    Amber has changed the world. All of us are made more compassionate by her spirit (especially the sassy part) and the depth if your family’s love and faith.
    The days ahead are Holy ground. May you know you are all carried every step of the way.
    with love,

  38. Love to you and Matt and sweet Amber. I think of you daily. As a mom and doctor, please know that I think you have made the right choice for your family. The nurses that choose hospice as their calling are truly angels on earth and will care for your little girl like she’s their own! Praying that all of you find tiny moments of joy that carry you through the weeks to come.

  39. I love you all so dearly and I’m so sorry to hear this news. You’ve all been so brave and strong and I can’t express enough how moved and inspired you all make me.
    I wish I could do more, for now- I pray for continued guidance from God for you all, and for comfort for sweet, sassy Amber.
    Rachel Postovoit

  40. You all have been faced with an extremely difficult decision to make. I admire your courage. Sometimes when you cannot control the outcome you certainly can choose the best path to travel. You and Amber have struggled these last several months with hope and prayer in your hearts. I am sure that as tough as it has been it has provided you with more time with each other. Seven years is not nearly enough time but at least you have those seven years of spunky Amber memories to hold on to. My prayers are with you for peace and comfort for everyone. Much love to your entire family.

  41. Our prayers are being said for you and your family. (Jenny Villa has asked us to pray.) We are parents of 8 children, one of which is in Heaven with our Lord. We understand. Much love is being sent to you from our family.

  42. My heart is breaking for you all. I know you have the grace and support to get through this. And I know it is and will be very hard. I am so glad you have such a strong support system. My thoughts and prayers continue to be with Amber and your whole family.

  43. 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

  44. 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.

  45. 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.

  46. 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 .

  47. 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.

  48. 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.🙏🙏🙏

  49. 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!

  50. 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.
    Erica L. Coutu
    [email protected]

  51. ✝️🌴 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. 💜🌴✝️

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

  53. 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.

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

  55. 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.

  56. 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….

  57. 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.
    Jan en Rikie Deurenberg
    The Netherlands

  58. 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.

  59. 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.

  60. 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!!

Comments are closed.