This afternoon, I received the call I’m always waiting for – the first of the twice weekly lab results.
This afternoon, I received news I’ve been waiting to hear for 14 months – “Chase’s counts are coming back, and quickly. We’ll repeat labs on Thursday, but barring anything really crazy, he should be ready to restart chemo on Monday. This is it!”
This is it. The last chemo. The last spinal tap. The last…
A small part of me is choking as I’m writing “the last“. The part of my brain that reads and absorbs cancer research is screaming “The last? You know better than that! This cancer is never over!”
But tonight, for now, for next week, it’s the last.
Joy.
I can’t believe we’re actually at this point. And for all the rest that we have yet to walk, we’ll take it as it comes…
Moment by moment.
It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.” Deuteronomy 31:8
These words washed over me almost a year ago now…weeks before radiation and clear scans. I stood next to the hospital bed where Chase slept and tried to take it in. Still? So much chemo, yet the cancer lived on?
I turned to the doctor and asked the awful middle-of-the-night question that was always in my head but never, until this moment, on my lips: “If it doesn’t clear… How does this end?”
She looked at me -perhaps questioning whether I needed to know in that moment- the compassion and concern evident in the lines of her face. And then she went on to gently explain the last days of this awful brain cancer when every option is exhausted. Her words gave me an odd comfort. I had pictured something completely different and felt a tiny relief around the pain in my heart to think that Chase would sleep more and more until he never woke in this life again. It sounded… peaceful.
On that day, I wept, and I stored her words away for another day that I still pray I never see.
Why share this now? Because my heart is heavy for the Fair family. A family of 6 whose darling baby girl, hardly older than Chase, diagnosed with the same cancer, in the same year, having gone through the same treatment… Phoebe… She’s in her eleventh hour. She’s their atypical miracle and they’re praying for another miracle even now as the veil grows thin.
These are dark things and not for the faint of heart, but I’d so encourage you to take a moment and read what Amey has written. It is more of the beautiful ugly…the precious pain that draws us nearer to God even as our minds scream “No! This shouldn’t be! Come quickly, Lord Jesus!”
Please join us in praying for the Fair family today. They wait expectantly…
Moment by moment.
For more information on Phoebe Fair and the Fair family, please visit her mom, Amey’s blog: www.anatypicalmiracle.com
**On Saturday, October 5th, at 10:30pm, the soul of Phoebe Fair took flight. Home with Jesus forever. -MbM-**
The end of chemo is so close that we can practically taste it and the full depth and breadth of all that Chase has been through in the last 14 months seems to settle a little more heavily with each chemo injection. The week started well with some little victories, but Chase quickly fell under the chemo – getting more tired and more aggressive as the week went on.
I don’t often write about Chase’s aggression…in fact, I can’t think of a time I’ve ever written about it. It’s a very difficult aspect for me to accept, let alone put into writing. Chase is a passionate and strong fighter. I still remember the doctor delivering him and saying “It’s a boy! …and he seems to be holding his head up on his own…wow.” This, we love. The pure stubborn defines so much of his cancer fight. Unfortunately, as it mixes with the brain damage and the treatment toxicity, and is magnified by the constant pain and discomfort, it exhibits itself in screaming, hitting, biting, and kicking. Frequently. He’s almost always quick to calm, and is always quickly remorseful, desiring to “make it right” with the person he hurt, showering them with hugs and kisses and telling them he’s sorry and he’ll never do it again, but the raw truth is that the days and weeks when he struggles like this sometimes seem like months and years. He walks through this intense treatment with more grace and strength than I ever could, but it getting the better of his temper is an honest and almost daily reality and I mention it here so that you can pray for Bob and me as we help him through this. Pray for us to give him grace while still encouraging him to be quick to hear, slow to speak and slow to anger (James 1:19-20).
Reading with Grandma at 6:00am one morning this week before leaving for the hospital
When Chase isn’t being aggressive, he loves interacting with people. On Monday, as we were waiting in clinic, he saw one of the nurse assistants and after chatting with her for a moment, he informed her that he needed to stay in clinic to see his doctor, but that she could go “find my room and make my bed”. Luckily, the CNA, besides being an excellent maker of beds, had quite a sense of humor.
This week, I also had a conversation with the amazing woman behind the organization that provided Christmas for our family last year. She told me that she had gone to the hospital earlier in 2012 and asked them who, in their medical estimation, only had a few months to live and wouldn’t see another Christmas. Chase was among those named. Almost a year ago. I’m in awe of these tiny glimpses of how God completely surpasses what we think we understand to be the course set before us.
But the reality is that facing Chase’s mortality again, and his frustrated aggression, and another week of chemo, and the needs of three other littles have left me physically exhausted and Chase’s on-and-off again elevated temperatures and visibly weakened condition have worn away at what little mental and emotional strength I had left. I didn’t even want to write because the week was hard and my response to it was often ugly. I’m staring down a new week beginning and thinking to myself “I barely survived last week! What do you mean there’s another one coming at me?”
Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:30-31 NIV
This is my answer. Whatever may pass and whatever lies before me, let me be singing when the evening comes.*
Moment by moment.
*excerpt from 10,000 Reasons; Chase’s favorite song.
Riding the hospital escalator under the whales with Grandpa (lower left corner)
Thank you so much for your prayers this weekend! We were informed yesterday morning that Chase’s counts had “come back with a vengeance” (ie: his numbers looked really good) and he was admitted for chemo shortly before lunch – residual cold symptoms not withstanding.
Here is a picture from the afternoon…he’s getting another ECHO exam to monitor his heart for chemo damage, but he’s smiling and giving a thumbs up, which I love. Getting an ECHO without screaming is a huge victory for Chase. His skin is so chemo sensitive that the feel of wet or cold is often more than he can handle. The gel used for the exam makes it very difficult for him to be still and stay calm. So proud of him for really working at it yesterday!
And with that, the second to last chemo cycle is well underway. Moment by moment.
Chase’s counts are finally recovering from his last round of chemo! Yesterday evening, we received word from the hospital that he has been cleared to come in on Monday. His levels aren’t exactly where they should be, but are very close. It is our hope that his Monday labs will reveal he’s fully recovered and that he can be admitted for the week. We don’t hope this because we love chemo, but because Chase only has two chemo cycles left! …and then he’s done!!
We would so appreciate your prayers as these last rounds are, in many ways, the most difficult. The protocol doesn’t change, but his body is exhausted and each round seems to take it’s toll quicker and more painfully than the last.
