Day 5 - BROKEN
Tonight Brian and I just sat, holding each other. Processing the hard moments that today brought... acknowledging that our arms were empty as our baby still sits on a ventilator in our room.
Despite our hopes that today would be the day we got to hold him and get him off the ventilator, we were unable to do so. Tests turned into more tests, and the safety of taking him off the ventilator was in question by the end of the day. So, I did not get to hold him today. I'm going to bed in this giant PICU room, so far away from him.
After 4 very long and unexpected days of intubation, I was so excited about today being the day. I made myself wear real clothes for the first time (ok, ok, a sweatshirt and lounge pants, but it was a big step up from the robe!!!!!), and put on makeup. I told myself that today would feel normal again. And today is ending with heartbreak.
He's with me, but he's not in my arms.
Today was the official diagnosis day. We learned that his neuroblastoma is NOT the 4S strain that we hoped, which is the low risk neuroblastoma. The scans today showed the cancer is on his bones, which makes it a stage 4 intermediate risk diagnosis. They are very concerned that the tumor is pushing against his lung and affecting his breathing. Additionally, we have the risk of kidney failure as one of his kidneys is completely encased in the tumor. They want to start treatment immediately. They said the size and location of the tumor means that he is more than likely in pain. This is absolutely horrific to hear, and breaks me. I just want to take it away. I want my baby to be healthy and safe.
To add insult to injury, there is an additional genetic test we won't get back for weeks. This test tell us if his neuroblastoma is in fact not intermediate risk, but high risk. The idea that there is a piece of the puzzle out there that could make this moment worse feels like a living hell. Every time we have sat down for a meeting it has been bad news. EVERY. SINGLE. TIME. Our faith is shaken and we are not feeling confident that the worst news isn't yet to come.
We've had a lot of broken moments during our short time here... When the ultrasound tech let it slip that he had a tumor before we even knew anything could be wrong with him. Walking up to our room where they were putting us for further testing, and realizing that we were in the Children's Cancer Center. Seeing the MRI scan that showed his perfect little body, and seeing one entire side of his abdominal cavity was a tumor. Taking him in for an MRI scan, and then hearing a Code Blue come over the loud speaker. I'll never forget the hot panic that came over my body as I realized that it was for his room, and finding out his airway had collapsed when they attempted the scan. Sitting with him for 12 hours trying to keep him calm while being prevented from feeding him so his stomach could be empty for the tests and scans. And now, 4 long days of seeing him hooked up to more tubes than I thought was possible.
I've cried harder than I knew was possible. I've felt my body go numb and seen stars when people tried to talk to me. I've felt so broken from a conversation that my physical body felt like I had been hit by a train. I've looked in the mirror only to see someone I don't recognize. I've seen the love of my life sob so hard he can't stand, just from trying to read our baby a story.
Only a week ago I was blissfully unaware of this tumor. And so crazy happy with my newborn. After a really difficult pregnancy, that newborn stage was everything I hoped for and more. He was and IS the absolutely perfect baby. And now we are ending today and we just feel destroyed. Shattered. BROKEN. We are trying to cling to hope but only seeing anger.
Cancer didn't you get enough from me? You already took my Mother what more do you want?! Why are you here again????
But I know that I know THAT. I. KNOW. that my God can handle my anger, my questions, my crying, my broken heart.
After meeting with our Oncologist this afternoon he ended the meeting by saying 'Ultimately it's not in our hands. It's in His hands. He already knows how this is going to go.'
Praying for a better tomorrow.
Comments (32)
You don't me, but I somehow clicked on a link that brought me to your page. My. heart. breaks. and aches. for. you. I have had sorrows in my own life and understand the depth of pain and grief that comes with news like you have received. Again, I don't even know you, but so much of me wants to reach through the screen and give you a hug. I don't feel I have any words to comfort you other than that I am going to be praying for your precious, precious family and following your journey. I am going to rally my friends to pray for you as well. Isaiah 43:2-3 When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you. For I am the Lord your God, the Holy One of Israel, your Savior. Psalm 56:8 You have kept count of my tossings; put my tears in your bottle. Are they not in your book? April Emery in Beaver Falls PA
Heart wrenching! No words can comfort your broken heart. I pray for peace.
Sweetie, I am praying, for Redden and for all of you. It is easy for me to tell you to have faith, and that no matter what happens, God's plan is perfect, but I'm not living through this, as you are. Still, I do implore you to have faith, and know that when you feel at your lowest, you can count on the prayers and support of those who love you.
I know there are no words that are going to make you guys feel any better. None. This sucks, and I am sharing in the anger that you are having to go through this at all. But I do know that God is big. Huge. And can do amazing things. I wish I could put my arms around you all and squeeze you tight. But my hope is that you feel God's presence -- HIS squeeze around you and through you.
So much love, and sadness, and hope running through me right now. Last night, I spent some time on the Sloan-Kettering site. I was amazed to see that there are some for real super hero type treatments for this. I am praying that intermediate is the worst news you will get. I remember those conversations, each worst than the last. I remember leaving Jonas in the NICU when I was discharged and being stuck behind a vehicle with a woman taking home her healthy baby, with balloons and a video camera. Something important broke in me that day. I didn't know enough to use God to take my anger and my fear. I love you and your family so very much. I can help shuttle kids to the Language Garden or bring you trashy magazines and some plates to break. Anything. Beth
Oh Beri my heart is just aching for you. Praying for that sweet baby.
Beri, I am an old friend and former work colleague of your sister in law, Lauren. I've known her for 10+ years and she's one of my favorite people on earth. Over the years I, through Lauren, have been privy to much of your life and its special moments, from your wedding to Brian to the arrival of your three perfect boys. While we've never met in person, I feel I've shared a few of life's journeys with you as I've married and had three kids of my own in a similar time frame. My heart goes out to you and Brian and especially to precious baby Redden as you begin this unimaginable journey. You are in my thoughts and prayers daily. May you find the strength you need in your faith and in each other. God bless.
You don't know me - my daughter is friends with your sweet sister Hanah... But I am a believer. I have added your family to a prayer wheel I am part of. And I personally will pray for ALL of you everyday. May our merciful God give you strength and comfort you through this journey. May you feel His loving arms constantly. xoxoxo DHutz Greenville SC
Beri... my daughter is a friend of your sweet sister Hannah... I am praing for your family each day and have added your story to a Prayer Wheel... I love April's verses from Isaiah 43... May our Merciful God give you strength and comfort you during this journey. Praying for healing, peace and understanding. DHutz Greenville SC
Words cannot express the sadness I feel for you right now. I know we don't know each other well at all - just neighbors with boys - but I felt that our hearts connected that day I met you and your boys on the playground. And now, when I read this, I just want to reach out and hug you and tell you everything is going to be okay. This just sucks and I'm crying as I write this, because never have I seen someone so radiant as you were pregnant with Redden and then to see your pictures of pure joy and perfection after his birth. Beri - you're right. He is absolutely perfect. I hate cancer. There is nothing that makes me angrier and you certainly have every right to feel every emotion you are. You're right - God CAN handle it. We are all here for you and are surrounding you with prayers and abundant love. Thinking of you so many moments.
God has a way of turning beauty from ashes. I can't imagine how painful and terrifying this is for you! However, I don't need to know and I know the person who does know pain, suffering, and heartache. His name is Jesus and he died for your little one and what the doctor can't do, God can! He is the GREAT physician and today I join my faith and pray for your little one and yourselves. God will give you peace, that surpasses all understanding and watch what He does with the ashes that have been spewn all over the past 4 days. You are a conqueror and the Lord WILL bring you those this. It is His mercy and grace that will sustain you. Father God, I "Thank you" for this family, this tiny little one whom you have given them specifically . I call on the that name which is above all names, great physician, the God that healeth thee, El Shaddai, whose says " to call on me all ye that labor and are heavy laden" and I will give you rest. Father you said that healing is the children's bread and I ask that you would open the gates and windows from heaven and that you would pour out a blessing and pour out your spirit onto and into this child and family. Spring up a well! God, I'm believing your word and ask that you would do what NO other power can do! Amen, and Amen!
Dearest Beri and Brian Such devastating news, I'm so incredibly sorry for the pain you are both going through. No words of mine could do any justice to the way you are feeling, I'm just so sorry. I hope and pray for you and your family. I hope you get to hug and kiss your little Redden so very soon. Prays, love and hope x x
We love you Beri and Brian and Redden and N & A. We pray for comfort, Lord, for everyone. For answers. For healing. For rest and wisdom. We are there with you in spirit, Beri, and grieve with you. We will stay here with you through it all, and pray with hope.
Beri and Brian, When I saw Brian's post on twitter my heart broke for you. Somehow I did not even hear the news of your beautiful (and 3rd) baby boy! He is just adorable. As a mom, I just cannot imagine how you are coping but please know that you are in my thoughts. I am hoping good news comes your way soon. Sending love, Lindsay Pumpelly
Oh Beri! My heart is broken for you but prayers of peace, hope and healing to you and all of your family.
Dear Beri ~ I am a friend of Kelly & Pete. Sending love, light, blessings, and strength as you fight this battle. All love, xo Maggie
Have you met June and Michael Gossling and their son Grant at CHOA? Grant is three and also has neuroblastoma. They are a strong Christian family going through much as you are. Please try to meet them. I too am a believer and know God will care for you well and will hold you close. Thank you for the privilege of praying for you.
I am praying for you and your precious baby and family. I've posted this on my church choir web page to support, pray and encourage you. You are not alone. We are with you. And God is with you every minute through this. Below is a comment from a choir friend..... "What strength this precious mom had to write this...she knows that she knows that our God has this. And I know it too. Praying for a mighty rush His Presence to consume this family and may this baby be healed for His glory for all to see!! God can do this-even at this fragile place! Let's pray through- for all we know that are threatened by this disease. By the blood of Jesus, in the blood Jesus and through the blood of Jesus it will be done."
Beri, I hope another day brings you more information, and hopefully a second of peace. I shared your story and now I think half the State of Florida will be praying and sending positive healing energy Redden' s way. I never told you how much I like his name. It's the name of a fighter.
Beri, Sending your family prayers for strength, healing and peace during this time. I am a friend of Lori's and met you at C's first birthday party. Our little girl was born on 12/12. At 10 days she was admitted to PICU for RSV. It was touch and go for her, we had so many prayers for her and one stands out. An older gentleman from our Church prayed to God and said: "You are this child's doctor and you know exactly what she needs". I would recite that prayer constantly and eventually we received good news. I can relate to not being able to hold her and those darn monitors. And not being able to nurse. No one should have to see their baby laying there with machines and tubes. So many prayers for you all.
Beri, I just saw a post from Shawn. Many prayers for you, Redden, Brian & the rest of your family. Will add you and family to our prayer list at church & my Prayer Warriors email list. As you said, "God knows how, why & when." He'll get you through this like he has before. Hugs.
You don't know me, but I'm Hannah Sides' cousin. Her post on Facebook led me here and tears are streaming down my face as I write this. I'm the mother of three boys and can only imagine the agony you're going through. But I know that God knows EXACTLY how you feel and is suffering through every second of it with you and your precious family. "In everything by prayer and supplication with thanksgiving let your requests be known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus" Philippians 4:6-7. I will be praying for Redden and you and your family, for healing and strength.
Brian and Bari, we send our prayers for you and your family. We were so excited when Lucille posted the wonderful news that her newest angel had arrived and so sad when we got the news of the terrible road you are traveling. We will keep saying prayers for you two and Redden and your others guys and the rest of your family and we have asked others to put him on prayer lists in lots of other places. Many are holding you close.
Beri and Brian, I am with you. I have been and will be praying for you everyday. Prayer group at work and my small group will be standing in the gap and fighting this war with you. There is no expectation of what you have to act like, be or do. You two are given full grace and room to be as angry, scared, tired as you are. I want you to imagine several people holding hands in a ring around your family. That ring is surrounded by 100s more rings of people holding hands around you...all of them loving, praying and cheering you on. We are with you. When you feel alone...think of being in the middle of that ring of power...when you don't have the energy....we will be your energy...your keeper...your cloud of witnesses...your family. This isn't over...even if it gets worse...it isn't over my friend. I love you.
i love you, friend. and i'm standing with you - believing.
I cant imagine. My love and thoughts are with you and your precious one.
Brian and Beri, my heart aches for you as you go through this unbearable journey with your superhero Redden. Your love for one another and your beautiful boys will shine through and you will take that superhero home to heal! You are wonderful parents and I know everyone you know and then some are praying for a better tomorrow and a better week. We love you guys and are sending prayers!
You don't know me but I will be praying for you and your family. I know families who have similar stories, but I have no idea of the pain you must be feeling. Keep your faith as God will guide you through this hard time for your family. I will continue to read your updates and pray for you, and get my friends and bible study to do so also, yours faithfully, Abby Maskell age 15 Australia
I am a friend of a friend of yours and a cancer survivor after being told there was very little hope. I want you to know that when I was going through my ordeal, the only thing I could think was that I would trade it in a moment if either of my two boys had been diagnosed, and so I can only begin to imagine how horrible your pain is. I have sought out in my own faith in Christ how it is that there is an allowance for little children to suffer or have such short lives. It has just never made any sense to me ever. I have, during my struggle, discovered only one truly important thing - the difference between the comfort and presence God provides in times of tribulation and the peace he calls on us to discover for ourselves. It took me nearly a year to discover peace and its value - prior to seeking it, I always thought of peace and comfort as having roughly the same meaning. I discovered that comfort is like a salve, something of medicinal value, a bridge to the next crying session with your spouse or parents. Peace is far more powerful - it eliminates the need for that comfort. I have not completely found such peace, but in the seeking, I found glimmers of it and how amazing it is. I cannot wait to truly discover it and I think I realize now that only reconciliation with Christ Jesus after my physical death will provide true peace. The more important current point is that seeking peace is seeking God's eye, his priorities, his list of important things for all humanity, but especially his disciples. Mortal life, in my opinion, while very high on His list of priorities, is not number one. Remember Christ and Nicodemus in the dark that night - Jesus tells him that you must be born again, but the other important implication there is that Jesus is telling him you must give up your mortal self and be born, not of the flesh, but of the spirit. For me, the understanding of that has made all the difference. If I truly have faith, I can mourn my own loss in considering my time away from my loved ones, but my best investment is considering the gain of being in fellowship with our Lord. In doing so, I can gain peace in knowing that my mortal life is transient anyway, but my immortal life is just that, immortal. I think this is, the closest definition of peace I can offer up to anyone dealing with the possibility of mortality, especially those dealing with the unrelenting pain of unexplainable mortality and pain of a loved one, especially a child. Recall, of course, that this is the same pain God felt when he had to watch his only Son die on the cross for an undeserving mob of humanity lost in sin. This all said, I will be praying for you as much as possible and know that so many others are doing the same - claim that POWER IN PRAYER and don't let it go because your little boy is not letting it go. He is a precious little child of God, so important to God and so much a part of God's thinking and doing everyday. Let that prayer RAISE YOU UP and be a constant reminder to those around you of your faith and your love for our Saviour. Yes, of course, spend time asking God for healing and comfort, but praise him, too - in doing so, you complete the circle of life. God - you have created me and my husband. Through the miracle of life, we created Redden, and through your power, he will persevere and we will praise you for time eternal. All my prayer time is focused on your family. You are a stranger and yet a sister, your husband a brother, and little Redden a child to me and my wife. Christ's love surround you. Greg