Pre-procedure game of “Got Your Nose” was pretty epic…
Monday
He lay on the pre-op bed and absolutely knocked us over:
“I will do a good job and I will be fine because I’m a survivor, okay?”
The medicine kicked in and he asked me to text his home healthcare nurse and let her know he’d been brave for the needle in his arm. And then, with a sigh, he passed into oblivion again for yet another MRI. I wish I could tell you the number but I’ve lost track…his 30th? …40th? Yeah, there have been a lot.
“Tell Miss Joanna I’m doing it, okay? I give you permission to tell her.” -Chase
Tuesday
Despite a brief meeting with Chase’s neurosurgeon on Monday afternoon, the final word came, as it always does, from neuro-oncology regarding the MRI. The cysts appear to have grown again, but Chase’s spine looks clear, his condition is beautifully stable, he isn’t having seizures, and so, we continue to wait. If the cysts continue to grow, he may need a biopsy or some other surgical intervention, but it is not the right time for those things. And so we wait some more…
Placing special markers on his spine
This is bad because nothing should be growing.
This is good because nothing is growing fast or harmfully.
This is the same because everything is growing marginally as they has been all along and we’re pretty much exactly where we were three months ago: watching, waiting, and scheduling another MRI in a few more months.
Out of the tube and awake…barely.
And as I write these things and feel a little weary as we start the fourth year on this AT/RT road, I’m mentally checking myself for complaining about a living, breathing son who probably shouldn’t have survived more than six months, some three years ago. The scan results comes down to what they always do: perspective.
Stuck in the wait a little while longer and choosing joy… moment by moment.
Blood pressure cuff + stick arms … If anything can handle it, Dr. Ewoldt can 😉
Today, I’m really excited to share with you what our average clinic day looks like! (yes, it’s picture sharing day here on EFAMILY…)
When we first get to the hospital, we report to the Hematology/Oncology floor for check-in and vitals.
Chase taking his chances with the germs while waiting in the Hem/Onc play area
After this, Chase goes to a clinic room where they draw the labs and he meets with his Oncology team for a dialogue session and a chemo “push” (a short chemo that can be given in a matter of minutes as opposed to his infusions which are given IV over hours/days). I have no pictures from our time in the clinic room this week, but I can tell you that despite six adults (four of whom were medical staff and two of whom were supposedly responsible parents) in direct intervention capacity, Chase did try and climb off the clinic table by himself and did fall backwards…you know…directly on his back…the area where he was about to get his spinal tap. [picture me with my head in my hands at this point] He was 100% fine. I think he just wanted to give his Onc team a small taste of “Life with Chase”. [head in my hands again]
From clinic, we procede to surgery for his spinal tap. They classify the tap as a surgical procedure because he has to be sedated. Apparently, a 2 1/2 year old boy can’t always lay perfectly still with a large needle in his back for a long time…who knew? [sarcasm implicit]
In pre-op, taking his own temperature
In preparation for his procedure, Chase is given a small sedation to make seperating from us easier (as we can’t go back with him). This week, as the drug hit his system, he just wanted to “beep” my nose until they wheeled him out. “Mellow Chase” is fun. A sedated procedure is what we call his “Nap With the Doctor“, and as he’s wheeled out for his “Nap“, we always tell him that we love him and we’ll see him when he wakes up. He often tells me to take a nap too (which usually makes me laugh and cry).
Bob on a conference call in the surgical waiting room
When Chase is in his procedure, we go to the waiting room, which reminds me to highlight the above picture. My incredible husband has worked diligently with his company to allow him to work from the hospital so that he can always be present with us. This can be hilariously confusing to medical staff meeting with us for the first time — I had an oncologist turn to me during a conference this week and say “But, we didn’t record the session. What session are you talking about?” One of those moments when I needed to explain that my husband was speaking to someone in Tempe, Arizona and not to the doctor. Communication hilarity aside, Bob’s professional sacrifice for us is amazing and I wanted to highlight that here. What a guy.
After Chase’s procedure, he’s taken to post-op and recovery to be monitored for a while. During his “Nap With the Doctor“, he usually receives chemo in his spine and has maintenance things done -like changing his dressings- that are much easier to do when your patient isn’t going ninja on you. (a hypothetical scenario, of course…)
Chase, attached to all his monitors, sleeping off his anesthesia in recovery (with Bob -still on a conference call- in the background)Chase -about 30 minutes later- in a different stage of post-op recovery (different room; same hard-working Dad)
FYI: That chair Bob is sitting in (in this last picture) is really comfortable and Bob always beats me to it. He beats me to it so regularly that the one week he didn’t come back to post-op recovery with me, Chase woke up and lectured me about not sitting in “Daddy’s chair”. [thinking about hanging my head in my hands again]
After Chase is recovered enough to be cleared (awake, talking, swallowing, etc), we are discharged! …and if we’re really lucky, it’s before rush hour traffic!
And then, all that is left is the ride home …
Chase and his vomit bucket resting after a long clinic day
And that’s an average clinic day for us…
Moment by moment.
The heart of man plans his way, but the Lord establishes his steps. Proverbs 16:9
**A note: In all of these pictures, there is a prominent bruise on Chase’s forehead. Don’t worry, that’s not from falling off the exam table. That is what happens when Chase’s platelets are low. He bumps or even taps against something and his body -in it’s compromised state- cannot bruise or clot properly. For the record, his head looks much better after his second platelet transfusion on Friday.**
I don’t want to write tonight, but there is much to share.
Yesterday, we had a full schedule of appointments at the hospital – Chase was cleared post-op by his neurosurgeon and was cleared pre-chemo by the oncology team. Oh, and in the middle of all the scheduled visits we had a series of UNscheduled visits when his father and I (please, keep in mind that we are parents of four, and in this moment, we only had ONE to watch) ignored that one wiggle that sent him backwards off his cafeteria chair and onto the floor…on his baseball head. Oh my. He’s completely fine. Someday, Bob and I will recover too.
Coloring to pass the time in pre-op
After all our meetings yesterday, we got to go home for a few hours and then came back very early this morning for Chase’s second trip into the OR in 2 weeks – this time for a central line, spinal tap, and first spinal injection of chemo.
Daddy prepping to assist the medical staff until Chase stopped kicking them 🙂
As I write this, we are back in one of our lovely lake view rooms on the oncology floor. For this first chemo visit, he stays for several days, incredibly vigilant monitoring, and lots and lots of chemo drugs.
Our new life
Oh, the drugs! In some ways, this is harder to handle than his surgery. I hate the thought of what these life-saving drugs are going to do to him. Each infusion makes this more real…or at the very least, keep us from ever forgetting where we are and why. I find myself pondering again and again the strange and sober mercy that allows such suffering in the now for the benefit of long term. (always pondering it…never questioning it)
Today has really been a good day and Chase is doing incredibly well given the circumstances. So why didn’t I want to write? Because today is a struggle for me. Not a high-level freak out… Just a low level wishing things were other than what they are. I feel very weak in the “bigness” of this disease and it’s implications.
With Chase immediately post-op as he was coming out of the anesthesia
In this moment, I know that I need to be reminded of Truth.
“Have you not known? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable. He gives power to the faint, and to him who has no might he increases strength.Even youths shall faint and be weary, and young men shall fall exhausted;but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.” Isaiah 40:28-31 (ESV)
Though I am weary, God is not. Though I am weak, God is not. Though I am very intimidated by my son’s chemo protocol, God is not. Though I have no idea what our future holds … GODKNOWS. In fact, He more than knows…He has perfectly crafted and designed these events in a symphony of praise and glory beyond our wildest and most beautiful imaginings.
Moment by moment perspective.
Moment by moment grace.
Sleeping peacefully at the end of a long day (Isaiah 26:13)
