Day 75- WONDERFUL + HARD
Last Friday marked the last dose of our second treatment plan.
DONE.
(Again...)
We are trying not to end this session like the last... where our hopes and dreams are hung on the promise that chemo never happens again. It was absolutely devastating to feel like we knew the end, and then hear that we had only just begun. So this time we just focused on the NOW. Happiness at another milestone achieved. And we put the thoughts of tomorrow where they belong... in the future.
The last couple days have been both wonderful and hard...
WONDERFUL. We haven't been in to the hospital for any unscheduled visits (other than one brief ER stint to replace the ng tube, yet AGAIN. Darn that extremely progressive hand/eye coordination he's got going on. We were in and out in 2 hours so I'm not counting that trip!) So, for the first time since he's been sick, we've been home very consistently. Our oldest two kids have been loving it and I've even kept them home from school a couple days, 'just because.' I still struggle with balancing the medicinal daily care of Redden, along with trying to be a decent parent to my other two, but the days have felt easier, even FUN. The warm weather has us going outside, and our trampoline has finally been reassembled, so we're all happier. Particularly Nolan who has been praying every single night since we moved for 'God to give his trampoline back.'
Redden has gained weight... a lot of weight. He's up almost 2 pounds this month, which is huge for any baby, much less a chemo baby. The title of Chunkins is well deserved!
He's the happiest little guy I've ever met. He wakes me up at night and gives me big smiles. He laughs at his brothers and reaches to accept hugs from them. He flirts with nurses (and has his favorites!). He's so unbelievably awesome that it's easy to forget he's sick.
HARD. Several of his bumps under his skin are larger. I try not to feel them. Mostly because I don't want to constantly be evaluating them, but also because I can't handle it if they are truly larger. I'm not stable enough for any reality that doesn't mean we are moving in the right direction. We have hope. We have faith. That's all I can process right now.
As much as try to keep our hearts open to you about this entire experience, truly, I don't think even WE understand the depth of the pain this has caused us. And because we feel that we want to try and start to work through this now, before the scars set in too deep, we're going to start meeting with a counselor. As much as I want to only see the good that has come out of this situation, it's time to work through some of the hard. This is our life now. And there's a lot of stuff that keeps us up at night and makes us feel like we're losing it during the day. We need to start to work through it. To openly question the 'how' and the 'why', as a family, and learn ways to embrace our reality. To move out of the mode where we're barely coping, and start to find ourselves again. Talking through our weaknesses. Try to find strength.
Tomorrow is our check-in day where he find out his counts and see how much longer he'll need the shot before we can stop. Every time I walk back into that place it's the most bizarre mix of emotions. I'm scared because I don't know what news I'm going to get. I'm always hopeful he's gained weight, his blood pressure is low, his counts are good, etc. I dread the procedures. His crying. My heartache. Yet, despite all of this, I'm truly comforted when I'm there. With the people that hold him, love on him, and want the best for him. It's the only building I can walk into with my baby and relax a little. He's in good hands, and I'm surrounded by others that GET. IT. Words aren't always necessary... these other families and I sometimes only muster a glance. But we're all part of the same nightmare, so it's easy to feel a camaraderie.
Praying for good numbers tomorrow.
Comments (27)
Praying the same...blessings and peace sweet sister in Christ!
Beri, Praying for you and your family - for strength, courage and good numbers! Your journal has allowed us all to travel through some of this journey with you which has been an honor and a blessing. hugs, jgd
We're praying with you! Amber's Mom and Dad
Praying! For good numbers and support for your and family moving forward. ❤️
Will be praying for good numbers! Beautiful pictures :)
We are there with you as an army of prayers and love.
We continue to pray for good news every day.
Sending you all virtual hugs and positive thoughts. I'll wear RED! <3
Sending you all virtual hugs and positive thoughts. I'll wear RED! <3
Praying for you and sweet Redden. He is in our family bedtime prayers with the kids and they are always asking how he is. Redden is such a brave and beautiful boy.
Stay strong! You guys are doing amazing, even though it doesn't feel that way sometimes. We're continuing to pray for Red and are sending lots of love your way today and every day.
Everyday we send prayers and love and light out to you and yours....have never worn so much red😊💜🙏🌞
Ps it is a challenge, but happy to hear you are being mindful and being in the moment...the past is just that,behind us...the future..no one knows...what we have is NOW! Your pictures and words are beautiful!!
Sending up prayers!!!
Thinking of you guys and hoping for good news!
It is all SO HARD! I'm so glad you are allowing yourself to understand that and to get some help in processing it all! I did the exact same. it's just not what you expect to be dealing with with a newborn. He is SO PRECIOUS and so are your other boys. I can't wait to meet you in person one day... With love and hope, Kristin Connor CURE Childhood Cancer
I'm thinking of you all-especially tomorrow. That boy is one big cheeks-sweet eyes-makes me smile-sweet boy. I'm glad he is having fun with his brothers.
Dear God, We are all centrally focused on one single prayer today - the #s Redden needs for health and as a vessel for You. Dear Parents, So admire you for working with the counselor. What a valuable moment when we realize to open that scary closet door and get in there and do the hard work. What a model for your sons. Dear Redden, You lil' snugglemuffinoodledoodlepunkinchucko'lovin you are loved and adored - keep up the smiles, weight and flirting!
Would like to echo some of KC's comments above. This journey you have been on for 73 days is NOT what any parents expect with their newborn. It has to be beyond HARD, beyond what any of us can even imagine! I commend you for seeking additional professional help for healthy counsel in guiding and supporting you in the days ahead.... and for celebrating precious moments of JOY, those milestones steps, being family with Brian and all three of your boys and for keeping your faith. Prayers flowing for positive steps forward and for stamina ahead. jgd
I think you are both so wise and so brave to be pursuing counseling in the big, middle, messy NOW of all of it. There are ways to heal from things in the past, but there are also healthy, healing ways to walk through things AS they are happening. Peace, wisdom, love and strength to you all in this journey. Redden and all of you remain in my prayers! Hoping and believing with you. <3
Lifting you guys up today.
I think this news is reason for a lollipop party among friends. I am so happy for his weight gain and he is such a gorgeous child.
So glad you are going to see a counselor. Many times it helps to have a third party who is completely unbiased to sit and just listen. You guys are always in my thoughts and prayers. I look forward to the day when I can again see you guys face to face. Love you very much.
Hi, Thanks for the update. Praying for Good News tomorrow. Many will be waiting for your next post. You know, so many are praying and thinking of your family everyday. Love, Peace, Strength, Courage and Patience.
Dear Beri and Brian, Prayers continued for Redden and family. He is a beautiful boy. You are working the Faith , Hope and also Love. And lots of it going around. Thank you for sharing this journal of Love.
Janice White has kept our bible study group (Focus) up to date on Redden and he & your family are in our prayers. He is adorable and will grow up to be a handsome man. Keep the faith. janice watson