We have had the most wonderful break over the holidays! In truth, the longest break Chase has had since being diagnosed. We’ve completed 14-16 cycles of chemo and 30 days of radiation.
So, now what …?
At the end of January, there will be an official evaluation to determine whether this treatment is working. Right now, Chase’s brain is still too swollen from radiation to be able to get a good “read” on how things look. However, we will have a small preview of the direction things are headed…
On Monday, Chase will be admitted to the hospital for three days of chemo which get started with a spinal tap and interthecal chemo (they inject it into his spine). When they inject the chemo into the spine, they also remove a small amount of his spinal fluid and test it for abnormal or cancerous cells. So, even before the big scans and tests at the end of the month, we will probably have an idea of what’s worked based on the content of the spinal fluid.
These evaluation sessions are …I can’t even think of an appropriate word to describe them… important to say the least. These are the times where we will sit down and talk through all of this working…if we will continue on with the 54 week chemo protocol, or try something else. These are the times that we will confront this ugly and stubborn cancer in the face and begin to know who is going to win. As you can imagine, these are the times we simultaneously hasten and dread with the question of which is worse – the knowing or the not knowing?
“I wait for the Lord, my soul waits, and in his word I hope.” Psalm 130:5
At the time I started writing this post, Chase had completed 17 of his 30 radiation treatments. He has now completed 22! These radiation days can be pretty intense and it’s not unusual to start the day in one location (usually home) and end the day in a completely different location (the hospital). So as you can imagine, these days are never, ever dull. [sidenote: “Chase” and “dull” are rarely in the same sentence]
Here’s what a normal radiation day looks like … no wait, scratch that. Here’s what a radiation day last week looked like (we reserve the word “normal” for the days we don’t arrive in an ambulance).
Chase arrives for radiation on the hospital transport. The mask is to hopefully minimize the germs…when he remembers to hold it in front of his face.
There is a beautiful built-in fireplace which runs the length of the waiting room wall (picture a lovely five start hotel lobby) and Chase loves it. In fact, he refers to the radiation center as his “firehospital” – not to be confused with his “fishyhospital” (a name derived from the aquarium in the lobby of his primary care hospital).
First, Chase gets his vitals done (blood pressure, oxygen saturation, etc) – which he hates – and then he gets to put a sticker on his sticker chart – which he loves. The radiation center staff kindly provided a sticker chart tailored to each child so that they can “check off” the days and see the progress they’re making. Chase’s chart was presented to him with Cars characters on it. Do they know him or what?
Here’s the sticker chart from around Day #6…Chasey with his radiation nurse, Roshena. He loves his “Miss Roshena” and I believe he’s actually proposing to her with a plastic ring he found in the sticker box. So classy.
After he’s “cleared” for radiation, we walk to the room he calls his “spaceship“. This is the time when he’s usually clutching the iPod and listening to/singing with 10,000 Reasons. I wish I had better pictures of this room. One of the most striking things is his mask lying by the table. I can actually see his profile in the contours of the mask and I find myself staring at it every time we go in.
The radiation maskIn the “Spaceship” – the anesthesiologist administers the drug as Chase falls asleep on my shoulder (sorry about the blurry quality – this was as good as we could get)
Almost every day, as Chase falls asleep, he says “I’m so brave, I’m so brave...” over and over to himself. It took me almost two weeks of this to get to the point where I wasn’t crying as I walked out of the room.
After Chase is asleep, I leave him in the “spaceship” and wait in the lobby. On this particular day, I had a particularly wonderful “Good Samaritan” who brought me a particularly needed drink. In other words, my dad brought me coffee.
Thanks, Dad!
After radiation is complete, the nurses allow Chase to sleep off the anesthesia for a little while, at which time, I join him in recovery and once they’re sure he’s stable and alert, we are free to go. Sidenote: for Chase, “alert” usually means “ninja“. A side affect of anesthesia for him is crabbiness – which means it takes three people to get him dressed on many days. A sidenote on my sidenote: when you read that last sentence, please don’t shake your head or cry at the thought of adults struggling with a small boy. Picture with a small, wry smile on my face as I type because I love his fight and although it is at times overwhelming, his stubborn, ninja-fighting, never-say-die attitude is a perfect God-given match for his cancer.
This day (that I took most of the pictures), we finished it as we’d started: on an ambulance. Once he got back to the hospital, he was given a little more chemo and then we were able to be discharged!
Back in the ambulance bay and sleeping off the morning – head shining with post-radiation lotion.
…and that is one of our more average radiation days! (ambulance and chemo not included)
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.**
We’re home again!! …after our shortest hospital stay yet!! (only three days!)
Thank you for praying! Chase had a successful central line surgery on Thursday and his Friday and Saturday chemo passed without any excitement (adverse reactions, weird vitals, etc, just the usual “excitement” involved in AT/RT chemo…)
A couple updates on the specifics for which I’d asked prayer:
So far, the central line is holding and has not infected!
The cancer is still in his spinal fluid, but that we entrust (as always) to the One who made him.
Our next scheduled chemo clinic is Thursday and we have high hopes that Chase’s white blood count will still be high enough that we won’t be admitted at that time.
I will leave you with a small picture of my Saturday hospital experience… Chase, with his track pants and light-up Spiderman shoes, sans shirt, chest wrapped in an ace bandage, stomp-running down a hospital hallway (while trailing a large IV pole) pointing at medical staff and growling “No smiling in the hospital!” …
Tonight I realized that it was probably time to introduce “Chemo Duck” to EFAMILY.
Yes, I said “Chemo Duck”…
The “Chemo Duck” is a stuffed duck whose name is “Duck” (a little like Chase’s panda bear named “Panda Bear”), and he’s Chase’s new friend.
He was given to Chase by the hospital as a “role play” toy. He (the duck, not Chase) comes complete with a central access port that can be flushed so that Chase can do to “Duck” what we do to Chase. Although, come to think of it, Chase currently comes with an access port too…
He is a fuzzy yellow number (again, the duck, not Chase) with striped pajamas and a scarf to cover his head… a nod to the common chemo symptom of hair loss. At what point ducks ever had hair to lose is currently still a mystery to me…
Picture my sitting on the floor next to Chase, sterile and gloved, trying to perilously clean and “flush” (inject) medicines into small plastic tubes surgically inserted into his arm… all while he sits perfectly still and neither of us do anything to break the sterility of the environment (you know, like, dropping things on the floor). Did I use the word “sterile” a lot? That was intentional.
Enter “Duck”: who is regularly instructed to “sit still” and “be quiet” because “Jesus loves him” (Sometimes I really wish I knew what was going on in Chase’s head).
Presently, Chasey and his “Duck” are sleeping… all sterilized, flushed, and ready for another day.
Here’s hoping all the people and water fowl get plenty of sleep tonight.
