God is our refuge and strength, a very present help in trouble. Therefore we will not fear though the earth give way, though the mountains be moved into the heart of the sea, though its waters roar and foam, though the mountains tremble at its swelling. Selah. Psalm 46:1-3 ESV
Verse of the Day
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Wrapping up Phase 1 🎉
It’s been a while since I last posted, time seems to go both slow and lightning fast during this season.
Today we wrapped Phase 1 of Hunter’s treatment. He was scheduled for a lumbar puncture and bone marrow biopsy, with spinal fluid chemo injection along with a monthly antibiotic that would have taken an hour to administer. We had some unforeseen circumstances put us behind schedule and we opted to only complete his LP, marrow biopsy and chemo, he’ll receive the antibiotic treatment with his chemotherapy next Thursday 7/30. That appointment will also be the first step in Phase 2 which will last 8 weeks (if we don’t meet any hurdles and he meets periodic blood count goals) and consist of weekly lumbar punctures in the first half and two chemo medications that will be administered at home. All in all, Hunter was very anxious today and when I say we really had to dig deep, we REALLY had to dig deep. Which leads me to what I really wanted to leave you with today;
Sometimes, I find myself having a lot to say about what we’re going through and then, there are days when I have no words at all. So in those moments I slow down, I try to listen more and talk less and I want to share few things I have observed over the last month;
Firstly, some nurses and doctors are angels, you can’t convince me otherwise. From something so big as watching them gracefully and confidently take your kid’s little life into their capable hands without blinking an eye, to simply telling you you’re doing a good job on a day when you really just wanted to melt into the background, it changes something in you. They’re steadfast, incredibly skilled, are some of the kindest humans to walk this earth and I will be eternally grateful.
Second, Jackson has been paramount in the “in between” and I am so proud of him. Our days and nights at home (between treatment sessions) have been a near constant battle against a steroid fueled insatiable appetite, interrupted sleep patterns, extreme irritability and swelling that has completely changed the way Hunter looks and feels, yet Jackson still treats him like the same little brother. He has remained familiar and consistent where we as parents, sometimes struggle to in the midst of all the uncertainty. For him, I am eternally grateful.
And to all of you who took the time to read this, who are praying for our family, who have donated meals or sent gifts, who love us and our boys, I am ETERNALLY grateful. I will never stop looking for ways to pay it forward.
We would like to ask that you pray for Hunter’s anxiety surrounding his port access to ease and for him to somehow make peace with that particular aspect of his treatment. Prayers for safe and successful procedures moving forward and that James is able to be present for some of them.
James would like to ask specifically for prayers for the strength to be a studious servant of the Lord and resolute leader of our family, which is no easy feat during times that shake you to your core. He is my strength and the kids and I will lean on him now more than ever.
1 comment on Wrapping up Phase 1 🎉
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Drive On
Yesterday 7/10 Hunter had his second clinic visit, we did not have to stick around for a lumbar puncture afterward so Hunter was in a much better mood having been able to eat beforehand. He experienced a lot of anxiety and fear leading up to this appointment and while there, he was very distraught during port access, the needle poke part of the appointment.
Once we made it through access, he did great sitting for his treatment, we were laughing and cutting up and the nurses kept coming by to see what the commotion was! It’s good to see him acting like himself and it’s the days and moments like these that we just want to live in forever…
We did get some not so great news; we spoke to the doctor about his marrow results (the marrow they collected while he was in hospital) the leukemia cells have a particular marker or genetic makeup that doesn’t change his overall prognosis, but will require more aggressive treatment. We’re just starting this journey and we’ve only just stepped over the starting line but we’re holding onto hope that no matter the news, he will beat this. So, we drive on.
We ask for prayers that Hunter will continue to respond well to treatment and that throughout this process he learns to lean on his family when he’s feeling confused, angry, or sad. We’re also praying for Jackson to be able to do the same, as he bears witness to his little brother fighting this battle..
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Independence Day
Hello everyone!
I hope you had an awesome weekend celebrating with family and friends. Our country has endured a lot in recent years and going through something like this, with our baby, really brings things into perspective. We lean on our neighbors to make informed decisions that affect our communities and families right alongside us but in times of personal crisis, we trust our neighbors to make those decisions FOR us. So as we move through the rest of the year, living our lives enjoying our freedom, let’s take the time to reflect on how we are loving our neighbors and find ways to grow in community together because that is the only way to get through what is to come.
Hunter has been fighting a pretty concerning cough and upper respiratory congestion for about five days now. We took him to the emergency room the morning of the 4th to be evaluated; they found nothing on his chest X-ray and concluded he may be experiencing allergies or a virus that his body is just having trouble fighting, due to his condition and treatment affecting his immune system.
We were able to go home that day and enjoy some fireworks with friends that night. Since the 4th we’ve been struggling with medication giving and oral care. Hunter is starting to realizing it’s going to be a long road of daily medicine and hygiene as well as weekly clinic visits and he’s not happy about it, so please pray for him to have patience and trust in us and the treatment plan his doctors have laid out for him.
I’d also like to ask for extra prayers that he learns to lean into his family and friends and opens up to us when he has big feelings about what he’s going through, this morning was particularly hard for him emotionally and it’s hard for us to watch him struggle with such big things at such a young age…
He has chemotherapy on Thursday 7/9 and we’re hoping this visit to the clinic is much less scary for him.
Thank you for your prayers and support, we couldn’t do this without you all.