I just passed my nearly unconscious son into the arms of the medical team. Have I ever mentioned that this is my least favorite part of procedure days? They give Chase a small drug to relieve “separation anxiety” before they take him back to the OR and he immediately relaxes, but I still hate watching them wheel him away from me. I just do.
After almost two weeks, Chase is back in the hospital today. Right now, he is in the OR to get a new central line, remove the picc line in his arm, get a spinal tap, and receive his spinal chemo. After post-op recovery, he will be admitted for about four days of chemo infusions.
Many times, my thoughts and prayers are more general in nature, but today I have a couple specific requests: Please pray that this new central line does not infect (as his first one did) and please pray that the cancer is no longer present in his spinal fluid.
“There has been no success in curing this cancer without radiation, but we know that there are long term neural and even physical effects from this course of treatment. What do you, as Chase’s parents, think?”
The impossible scenario with the impossible question.
What do we think?
In that moment, I think I wish I’d never walked into the room and never heard of cancer, and brain tumors, and chemo, and…
The reality is that Chase (barring the miracle we never cease to hope for) will begin radiation in a few short weeks. He is an excellent candidate for proton radiation (a “better” type) and our preliminary meetings and planning sessions with the doctors have been very encouraging.
It’s taken me a long time to blog about this scenario and its because I have found it almost impossible to write through being in a room and discussing the crushing reality of your child’s impending mental and physical changes …all the while knowing that these changes are still a lesser damage to him than his cancer.
Then, we leave the room and he’s still our Chase. In many ways, we said goodbye to who and what Chase was the minute we drove into the ambulance bay on that epic Tuesday in July. And at the end of my every thought and emotion on this, I have to come back to this promise…
“For you [God] formed Chase’s inward parts; you knitted him together in his mother’s womb. I praise you, for he is fearfully and wonderfully made. Wonderful are your works; and my soul knows it very well. Chase’s frame was not hidden from you, when he was being made in secret, intricately woven in the depths of the earth. Your eyes saw his unformed substance; and in your book were written, every one of them, the days that were formed for him, when as yet there were none of them.” Psalm 139:13-16 ( personalization added)
Chase’s cancer treatment calls for a sixth week evaluation.
It’s hard to wrap my head around having had six straight weeks of chemo already.
We spoke with the research fellow on Chase’s team yesterday and the preliminary look at his 6 week MRI showed no new cancer growth (a very real concern with an aggressive, malignant cancer) and the existing areas of cancer to be slightly decreased.
JOY.
We won’t know the full impact of these findings until after they are reviewed (probably next week) by all the relevant specialties (oncology, radiology, neurology, etc), but we are so encouraged even by what we have already heard… The chemo is working.
JOY.
I often close my thoughts with this, as it never ceases to be less true to us:
We don’t know what lies ahead, but we continue as we have…
Most days, the fact of Chase’s cancer is recessed behind the reality of simply caring for him and the rest of my family. However, there are some days when the cancer is heavy on me. Days where no matter how I think, pray, reason, or verbalize, my heart and mind are unshakably heavy with the weight of this awful disease and it’s toll on the ones I love.
This last week, I had a bad cancer day. On Tuesday, we found out the results of Monday’s spinal tap – that there were still cancer cells in the fluid. We had not expected them to be gone, but we had hoped. There was no status change in Chase or his treatment, but that news put the cancer back on me.
The heaviness stayed with me for some time and when I was finally able to escape the room, I took a walk and sat by the cloudy, windy lake – which seemed to mirror my mood.
“I believe that I shall look upon the goodness of the Lord in the land of the living! Wait for the Lord; be strong, and let your heart take courage. Wait for the Lord!”
What incredible words in a moment for which there was no explanation! Yes, I can wait…I WILL wait….why? Because I believe that I will see God’s goodness. Whether His goodness manifests in healing my son is for His mind alone at this time, but I know that He is good, and so I wait …
Our trip to the hospital this weekend was unscheduled, but it wasn’t completely unexpected.
Up until now–as we’ve made our decisions about Chase’s treatment plan/location–we haven’t said too much about AT/RT, but if you read “The Other Shoe” and googled that specific cancer, you probably already have an idea about what this looks like.
The truth is that AT/RT is very aggressive and doesn’t have a great prognosis (I won’t share the exact percentage here because Chase is either 100% with us, or he isn’t and that’s all that really matters). Regardless of statistics, Chase is a fighter, and the cancer’s aggressive nature requires an aggressive response.
Treatment of AT/RT is a little like a Looney Tunes-style destruction of cancer cells: they’re going to punch it, and then kick it off a cliff, and then half-way down the cliff, catch it and put it in a cannon and shoot it to the moon… then let it fall to earth to explode in a fiery ball of death in the side of a mountain (I’m picturing Wile E. Coyote in my head right now).
What this looks like in real life is: getting to know the hospital REALLY well. Chase’s treatment protocol is front-loaded to try and force a remission and so for almost the entire first half of the year-long period, he is scheduled to receive chemo every week (yes, every week).
Because of this, he is going to be in a pretty continual state of low immunity, which means he’s prone to every infection and will get fevers very easily. Because of this, he will probably have a lot of unscheduled hospital visits (like this weekend) for antibiotics, transfusions, and extra monitoring. Chase’s oncology team had been verbally preparing us for this from the first day. It doesn’t save us from seeing him in obvious pain in a hospital bed with a fever of 104, but it definitely helps prepare us to expect it.
Does it sound crazy? Yes, probably, but our son’s life is the answer to that question, so how could we ever NOT pursue this treatment.
I do not know how this year will end or what the long term effects will be on our family.
Here’s what I do know… We are going to get through it (let’s all say it together) …
Moment by moment through GRACE
The heart of man plans his way, but the LORD establishes his steps. –Proverbs 16:9
