Day 102- RESULTS
There have been a few devastating moments during our journey with cancer. The first time we hear the word tumor. When we found out he couldn't breathe on his own. When we signed the papers for treatment. Yesterday was another really awful kick-you-in-the-gut moment that will burn in our souls forever. The conversation feels a little blurry, but the main words were:
Tumor is larger... cells possibly mutating into another type of cancer... need additional biopsies... recommend major surgery.
We stayed up incredibly late, google and tears our friends, trying to make sense of the conversation. We had expected to hear that it hadn't changed. We had hoped to hear it had shrunk. We are devastated to hear it's larger.
A panel met yesterday to look at his scans... and they don't have definitive answers for why the tumor is unresponsive. It's not behaving like a pattern 4S. This could mean many things... the cells could be mutating. It could be a different type of cancer... a ganglioneuroblastoma. Tumors of that kind do not respond well to chemo, so it's a possibility. Although the treatment so far hasn't worked, we do not feel it's been a mistake. It's impossible to know how much effect the chemo has had in the past. We know it was necessary to get him off of the ventilator. And there's a strong possibility it has kept the tumor from being more invasive, growing faster. But at this point it's no longer the best option for him. Surgery appears to be our best (and possibly only) option.
This week we are meeting with surgeons to hear the specific recommendation for his surgery. Thanks in advance for praying and thinking of us as we have hard conversations and make huge, scary decisions.
Since the day of diagnosis, every twist in the road has led us to a place that is harder, more frightening, more awful. Yet each day brings more smiles, more laughs, and more milestones from Red. And that's GREAT NEWS... he's doing SO WELL!!! He handled sedation WITHOUT INTUBATION!! He has met ALL of his milestones for a 4 month old! He's gaining weight! He's HAPPY!!!
We are fearful. We are grateful. We are devastated. We are hopeful.
And we are CERTAIN... that Red is simply AMAZING.
Comments (42)
Well, the first thing that comes to mind is screaming a four letter word that begins with "F... cancer!" I'll probably get booted from posthope for that one. Then, consider beneath every anger is sadness that hasn't found it's way yet. What more would you have us do Lord? Come closer? Ok.
Praying constantly for all of you.
We have been following your story for months. Devastated to hear news we had prayed would be more encouraging. Many, many people you will never meet are with you in spirit and in prayer. Keep the faith and we hope you feel all the love. Katie's Mom
I am so sorry. I don't know what else to say. I will keep praying and so will thousands of others who follow your posts.
Praying for you all. So sorry to hear of yet another set back. As I sit and feed our two month old, I simply can not imagine how very difficult this has been for you guys. You are such an incredible and strong Mommy, even through the fear and tears and pain. Thanks for openly sharing your journey with us. ((Hugs))
Oh Beri, I sit here with tears in my eyes and then I see Red with his big smile and his CURE tattoo on his leg - how can I go from tears to the biggest smile in such a heartfelt moment - ONLY YOU can write so beautifully to make me do that. I just want you to know, I LOVED hugging your neck at Lauren's Run on Sunday, it was the highlight of my day and the fact that you got to also meet our son Trenton. As I said Sunday and the first time we spoke, I'm here for you, one neuroblastoma cancer mom to another. Love, hugs, and most of all PRAYERS, keep believing in miracles XOXO Ginger Kindred (and family) XOXO
The only thing that makes reading this post manageable (that's not the right word, but there's not really a word for the feeling?!) is his ever-present, smiley, giggly face. His sweet disposition and spirit truly transcends the camera lens. He really is a superhero, standing strong in face of all his adversity. You and Brian are superheroes, too. And Nolan and Arlo are super-brothers, though they my only realize it as they get older. Praying for his treatment team and family always.
Just. Devastated. I've been keeping you guys in my prayers, and it won't stop. Praying for peace, wisdom, encouragement, and hope. Sharing my tears with you.
I sit in shock and devastation with you. I'm numb. Praying, as I know not else what to do.
So devastated to hear this news. Options remain, no matter how terrifying, and that is a good thing. His smile is radiant, you can see and feel the joy he brings you. Sending strength to your family, every day I hope Red's journey rounds the corner. We are all with you every step of the way.
I still believe in miracles. I still believe Redden will heal. I believe the surgery will take that tumor away and he will have no more cancer. I will keep praying. xoxoxo
Sending up many prayers!
I gave Redden's story to my brother who lives in Salisbury, NC and asked him to put his story on their church's prayer list. Until a Bunch of very religious Black folks pray for you, then you do not know prayer. Big smiles. They prayed for me as I sat at death's door and here I am, still here. That picture of the three boys together is etched in my brain and I ask God to keep that unity intact. God Bless each of you.
Look at that amazing kid! In him thrives the joie de vivre that so many of us strive to even glimpse during the course of our daily routines. My heart aches for you, Beri and Brian, and the kiddos as you continue through this crazed journey of ups and downs. Continue just as you have been - honest, hopeful, willing to let the anger roll over you when needed, strong for Red, open to leaning on all of us who gather here and everywhere to support you, and most importantly full of love that lil' Red is thriving upon. Love, prayers, and hugs to you.
I am so sorry to hear this news and cannot even imagine the devastating feeling. Wishing and praying for something more positive to come your way. Your family is in our thoughts and prayers often and I hope to be able to do more to help out in the coming weeks. What a handsome little fellow Redden is! I can't wait for the day when there will be better news, but I know that you all will continue to find strength and peace in your faith and in what He is putting in your lap. You all are encouraging so many through your openness in sharing this journey and through the strength you are showing. Your boys (all 3 of them) are so lucky to have such incredible parents!
So many prayers with you all. Love his sweet smile!
Praying for your sweet baby and all of you!
Yes he is amazing. Truly fantastic.
I am so saddened to hear this news - we have been praying for Little Redden along with our daughter Natalie & Family - God has you in his hands and he alone will give you the wisdom you need to get through - I know you trust in him - let him continue to hold you through this decision. We continue to be your prayer warriors ! Chris & Kathy Law
Praying for you guys
Praying for you guys to get some good news and that the surgery would be effective.
Thank God no more chemo! Thank God we know more about what it's not. Thank God there is a dedicated team studying this. Thank God he is happy. Thank God friends are meeting so many of your other needs. Thank God that you are with us and even though we walk through this valley you will give us comfort, you will restore our cried out soul, you will make us to lie down from our energy depleting struggle and give us rest, your love and goodness will go before us and after. Thank you God...in the midst of this storm.
Loving that little guy! What a joy he is.
Nothing to say except pray.
I opened your message with so much hope, but then . . . I don't know how too express what I felt. After a few minutes I realized that this may well be the turn in the road to progress in this perilous and devastating journey. I still believe that God has a miracle for this precious child. My husband and I pray for that. We pray for you, Beri, that you will feel God's loving arms around you and give you the strength to weather this storm through to the day when Redden is clear of this .
It was an absolute honor meeting you and your 3 wonderful boys while I was visiting my friend, Natalie, in Atlanta last week. While sitting and chatting with you, I was so unbelievably impressed with your ability to still smile, laugh, and enjoy small moments of happiness. It is no wonder where Redden gets his strength and fortitude. I will not say that I understand how you feel because no one except you and your family can. But from reading your blog, I know you are scared. I know you are filled with anguish, tears, and anger. I know you have millions of worries and even more unanswered questions. I know the burden of your daily struggle makes just breathing feel almost unbearable at times. I wish that I could give you some words of comfort. I wish that I could tell you that horrible things like monsters and cancer and broken hearts don't exist. I wish that I could tell you that everything is going to be OK. I wish that I could tell you all these things and that they all be true. But I can’t. But what I can tell you is that you are strong. You are resilient. You are filled with faith, beauty, and life. Each new sunrise offers up new hopes and new dreams. Each tear shed is a symbol of your heart overflowing with love and compassion. Each breath is another chance to laugh and play and make memories. Redden IS simply amazing and remember, so are YOU.
Praying for you guys and that sweet sweet baby. Tearing up now, I can't imagine what you are feeling. So so so good to hear that he is hitting his milestones though!
I have another four letter word for this beautiful baby boy. *Hope.* It is the strongest four letter word there is, next to Love. And he deserves both. Push the envelope. Find doctors willing to try cannabis (in its organic, pure, minimal to no side effects form). Keep open minds. Don't stick soley with traditional medicine. Soley being the key word. Natural treatments compliment and aid traditional treatments. Ask your ancestors for help, AND LISTEN. In your quietest moments, answers will come. Don't dismiss them. Remember that to him, this is normal. Not a truth we'd like, but a truth that is strangely comforting, knowing that he can be happy without feeling sorry for himself. And remember too, that's it's okay for your children to see you cry. They'll learn how to deal with their emotions rather than surpress them, and they'll learn that you're human, compassionate, and that you care and Love deeply. They'll respect you, without even consciously realizing why until years later. You are wonderful. You are God's gift to that child. The greatest one he'll ever have.
I don't know how to say what I am feeling like right now but do know I am thinking about all of you and little Redden. I understand the deviation that you must be feeling. Prayers coming your way. Skip
That gorgeous smile has to be for a good reason. He is doing well despite the news. More prayers, more positive energy----all coming your way! You are all in my prayers every day, a few times a day. The almighty hears and will heal.
Simply terrifying news. I pray that surgery can scoop it all up and so Red can move on with being his amazing self! He is so scrumptious and adorable!! Xoxo prayers to lift you all up and that He continue to give you strength, courage and faith!
This is heart-breaking!. I am so sorry to hear this. I will keep praying.
Praying for you angels, What a gorgeous boy and what a fierce mama, I'm telling you Beri, the love you are emitting is powerful, we send it back, may it be healing. All my love, R
Psalm 57:1New Living Translation (NLT) 1 Have mercy on me, O God, have mercy! I look to you for protection. I will hide beneath the shadow of your wings until the danger passes by.
We will continue the prayers. So so sorry to hear that news. Those doctors will do everything in their power to give Red the best they can.
Like everyone else, this is not the news we wanted to hear. This takes my breath away. Praying extra hard for the panel, the doctors and the nurses. Again so many prayers are going up to heaven and coming back to you and your family. Love, Peace, Strength, Courage and Patience.
Continuing to pray for all of you. He is an amazing boy.
I too believe in miracles, and I do believe redden is amazingly special!! The prayers, the positive energy , the love go out to you all continuously thru out the day. Every day....💜🙏
Were still with you all every step of the way. Waiting and hoping for this to take an upswing.
Even though this report is a disappointment to your beautiful family, and friends and strangers that have joined in prayer- we still have Hope! And Redden's smile is GIFT! Prayers continued for this beautiful child of God and family. May God continue to bless Redden with good medical doctors, nurses and staff and good decisions. God bless all.
I am thinking of you all daily and praying for Redden and for your amazing family!
Although I don't know you, I feel I do. I have been following your family's story since the beginning and check in regularly to see the updates. Today tears are streaming down my face and my heart is completely broken for you as you continue to face hardships and continue to hear over and over the worst and most frightening words. But I want you to know Red is SOO lucky to have you as his parents. The love you feel for him is tangible and the words you speak are so inspiring even during your darkest moments. On my way to work today I happened to hear some words of wisdom and thought I would share as they really hit home for me. Every "no" you receive leads you one more step closer to that "yes" you are looking for. Though you don't know the reason Red and all of you have to go through this, someday you will, maybe not here on Earth, but in a much better and wonderful place. My prayers will continue for all of you. God please wrap your arms around this dear family.