Yes, we even brought some home. 😂😂

Nachos from the movie theatre

"Cheese makes everything better, right Mom?" - direct quote from a kiddo who's feeling a lot better. 😜

Callum has been craving theatre nachos (no other kind Mom!) for a couple of days now - so I've just bought the most expensive nachos EV-AR to see that goofy smile again. 😍

Pancakes Galore

I feel like I'm getting better and better at making pancakes - since the fluffy soft texture soaked in syrup is about the only thing Callum has been able to eat/tolerate. (Interestingly, it's his favorite breakfast food! 😉)

I spoke with his oncologist yesterday because this unrelenting pain has been so unusual and new to us. I know it's not unusual for many - but since Callum has never had this reaction before I wanted to double check and make sure this was all ok. Sadly, it's not unusual. Our doctor explained each time, your body can actually react differently - so having these strong side effects, when he hasn't had them before, isn't unheard of. 😩

The steroid plus vincristine combination also makes it worse - both in terms of the pain Callum's body is dealing with, as well as the emotional hold that the steroids have on him. It just magnifies the horribleness of the situation and makes him feel like crap.

I explained to our doctor that Callum has also been really upset with being extremely hungry, yet his jaw pain keeps him from eating anything. Our oncologist exclaimed "Oh jeez - that's just torture!"

Exactly. I'm pretty sure Mr. Callum would agree.

So, he asked me to pull back on the steroids - we're supposed to give him 2 doses a day - but he wants me to reduce it to 1x a day and then just spread out the remaining doses we have left across additional days (so he'll still get the same amount he's supposed to - we're just hoping it'll be less severe each day).

And, we discussed possibly holding off on his next vincristine push, which he's supposed to have on Thursday. I wasn't as keen about that - we've come so far, he's done so well, and I want to make sure we continue to stay on top of his treatment for the entire program - but our doctor explained, if he's in so much pain that he can't walk (which has been happening), they may decide to withhold. I said ok fine - let's see how he's doing on Thursday then....

So far today has been better in general. See my next post for our "light at the end of this crappy vincristine tunnel". ;-)

Loopy

Well, after that nap I spoke of in the last post, Callum woke up in severe pain again. :(

He screamed for an hour straight and nothing I did to try and relax and calm him down seemed to help. (Remember, it was just two hours before I had given him Tylenol, so I couldn't give him anymore). Frankly, he shouldn't have been in that much pain still, only two hours into his Tylenol. :(

It was nearing 5pm, which meant the clinic would be closed soon, so I called, and kept calling, until a nurse finally answered. ;-)

They discussed our situation and decided to write us a prescription of oxycodone (yep, still getting over my massive blunder from last night and it's back to haunt me today!). :/

They could only write the prescription out to the hospital pharmacy, which was a drag. So I loaded a screaming crying Callum into the car and we drove to the hospital to pick up the new prescription (thankfully, we have awesome neighbors who took Logan to swim practice so I could stay home and manage Callum).

The prescription wasn't ready when we got there which was irritating, to say the least, since I was carrying a 50 lb moaning child in loads of pain (and the clinic had assured me it would be ready by the time I got there). His legs have been hurting him so bad that he hasn't been able to walk very far (thus, me carrying him). :(

So, we sat in this tiny little pharmacy, which is next to the front door of the hospital, me holding him and patting his back and shushing him to try and relax, all while he screamed in pain, kicking and punching and holding me and burying his face into my chest.

It was horrible and gut wrenching.

Everyone looked at us with the most pitiful of faces.

The pharmacy finally finished up our order. I hustled us back home as quickly as possible, and the minute we got home, I gave him a dose (of the right amount - yes!). :)

About 30 minutes later, I could hear him laughing with Logan (who had returned home from swim practice). The two of them were cuddled on our bed watching shows on their iPads and chatting as if he hadn't been in the most excruciating pain just an hour before. I asked him how he was feeling and he said his jaw still hurt a little but his legs felt much better. Phew!

Another 30 minutes rolled around and I could now hear him giggling hysterically and uncontrollably. A little too drunk on whatever he was watching, it seemed. I checked in and asked him how he was feeling.

He said, "my legs are tickling!!" And then started to giggle again. Then he said his arms and mouth were tickling too and he asked me to make it stop. :)

He wasn't crazy about the tingly feeling, but couldn't help giggling, which also frustrated him a little. I explained the medicine was doing its job, and finding all of the little painful spots in his legs and arms and face and tickling it out of him. He seemed to like that idea and gave me a big grin.

While I'm not crazy that my kid is loopy high, I'm much happier (and relieved beyond measure) that he's feeling better and not in anymore pain. Plus, I really missed his laugh and goofy smile. :)

Accidental Overdose

Like clockwork, Callum began experiencing jaw pain this weekend, a horribly uncomfortable side effect of the Vincristine.  Normally, we are able to manage the discomfort with a heat pad held on his cheeks, but this time it didn't seem to be helping.  And, to add fuel to the fire, his legs started hurting quite a bit as well (bone pain is a known side effect of Vincristine).

Because he's on steroids, he's particularly moody and cranky - which makes this all the more amplified because he's feeling so miserable from the bone pain, and then gets super emotional from the steroids.  The steroids also make him super hungry - but he's been in so much pain from his jaw and legs that he can't focus enough to tell me what he wants to eat (and it's painful to chew).

It's been horrible.

Last night I gave him some Benadryl to try and help him sleep better (because he's been having very restless nights).... I also laid down with him since he's been needing a lot more TLC to help calm down.  It helped a little bit - but he was still very restless, moaning and uncomfortable, kicking and twitching in pain all night.  He finally woke up about 11pm crying in pain, and I couldn't get him to calm down.  I couldn't give him any more Benadryl, since it was too early and we're not supposed to give Tylenol, because it could mask a fever (in hindsight, I should have called into the clinic and asked permission to give Tylenol!).

We do have a prescription of a strong pain killer (oxycodone) which we can use if he's dealing with bad pain - so I decided I better give him that.  It's actually an expired prescription, so I knew it wouldn't be fully effective, but I was hoping it would at least take the edge off so he could get comfortable and get some rest.

I pulled out the bottle, which read 5mg/5ml - so I proceeded to give him 5mls of the medicine.  As I was putting away the bottle, I noticed I misread the label.  The 5mg/5ml was giving the strength of the prescription - but the actual instructions read "give 1ml..."

OH SHIT.

OHSHITOHSHITOHSHITOHSHITOHSHITWHATTHEFUCKDOIDO?OHSHITOHSHIT

I seriously panicked.  I haven't experienced that type of sheer fear in a very long time - maybe ever.

I called the on-call oncologist immediately to see what we needed to do.  While waiting on hold (which felt like FOREVER mind you), I woke Jon up and asked him to sit with Callum, make sure he was doing ok and stayed conscious - he asked what happened?  I said, I just gave him 5x the dose he needs for oxycodone.

He repeated what I had said earlier, OH SHIT.

As soon as the oncologist answered - she started asking about how Callum was feeling (because I had talked to her two nights prior about some painful constipation he was dealing with, so she thought I was checking in).

I interrupted her and said yes yes, that's not the issue now.  I gave him too much oxycodone and I'm pretty panicked right now so I need you to help calm me down and tell me what to do before I freak the shit out.

So, I told her the events that led to me giving oxycodone and how I misread the prescription.  In addition to the prescription being expired, it was also written when he was smaller - so I was HOPING that, because he is heavier now, maybe the overdose wasn't as much as I thought.  We did some quick math and concluded he probably had about 2x the dose he would need, not 5x, which made me feel better.  Still freaking out, and worried sick, but a tiny bit relieved.

She told me he would be okay, not to worry, and to bring him into the ER so that we could have a doctor assess him in person.  I said no problem - hung up and started to get dressed.  Then, out of nowhere, I just lost my cool completely and broke down sobbing.  I'm pretty sure it was plain ol' adrenaline that was helping me keep a level head and talk to the doctor to figure out a plan - and once my body knew we were going to be ok, that we were headed to the hospital, it just collapsed without warning underneath me.

I know I was stressed from worry about Callum's discomfort, and extremely tired from a few sleepless nights, so I know HOW I could make the mistake I did - but I still couldn't believe I DID make the mistake that I did.  :(

Here we've been, literally fighting for Callum's life these past 2.5 years, beating Cancer to the ground, and then I do something as stupid as overdose him with a strong pain killer.  :(

I was embarrassed.  I was mortified.  I was scared.

So, we headed to the ER.  The 10 minute drive felt like forever.  I was acting like a crazy lady - mumbling to myself, impatiently asking the red lights to switch to green faster.  I was still really anxious and just wanted to be at the hospital already.  Callum was pretty sleepy, as the meds were starting to kick in, but he would still answer me (in a very quiet sleepy voice) when I talked to him, which I felt was a good sign.

We were seen pretty quickly since they were expecting us, thank goodness.  He had woken from his sleepy ride and was asking the nurse for food and to watch a movie.  His vitals looked great and the nurse reassured me, while the doctors would need to do the final evaluation, she thought he was probably going to be fine since he was awake, answering questions and watching TV.

When the doctors came in (we had two, separately, evaluate him), they both essentially said the same thing.  The first doctor (more junior) said Callum looked good.  Said he should be fine but they'd like to keep him a bit longer just to monitor him and make sure he didn't have any late reactions (or wasn't in any more pain).

He confirmed Callum got about 2x the dose he should get, but that with pain killers it's a little subjective since they'll sometimes give more or less depending on the patient, how they metabolize, how much pain they're in, etc.  So while unlikely, it also wouldn't be unheard of to give him this much.  And, because the prescription is in liquid form, it would be super hard for him to seriously overdose on it, since the liquid takes longer for your body to absorb.... Anyway - he was just trying to make me feel better, which I appreciated (and did help).  He reassured me that Callum would be ok and that it was probably what Callum needed, to get over the pain.

The second doctor (head of the Pediatric ED) stopped by and within 2 minutes of looking at Callum told me he was going to authorize our discharge.  He said there was nothing more we could do but just let it wear off - and the fact that Callum was breathing fine, awake and watching TV were all great signs.  He told me the amount I gave him was "generous" but not life threatening.... I smiled at his use of the word generous.  He was a good doctor.

We spent a couple of hours at the ED, all said and done.  Callum fell asleep on the ride home and transferred to his bed pretty easily.  I was still a little jittery but finally did conk out about 2:30am or so.  Callum woke up around 6:30 this morning, a little out of sorts but seemed ok and just wanted to climb into bed with us.  He fell back to sleep after a few pats on the back and slept in until about 8:30am.

Due to how crummy the night was, and how crappy he's been feeling in general, I had him stay home with me today (instead of going to summer camp with Logan).  It's probably good that I did, since his pain hasn't subsided any, and he's been writhing and screaming in pain most of the afternoon.  I called in and got permission from the oncology team to give him Tylenol (after taking his temp first), and after about an hour, his little body finally gave in and fell asleep (he's currently snoring by my side).

It seems a little odd to me that he's had such a strong reaction this time around (it's never been this bad before).  It's been a real challenge to get through each day like this.  I'm just so thankful that this is our last round of Vincristine, and my heart really feels for any of the parents who have had to deal with this sort of crap after every dose they've received!  :(

Just when we think we're out of the woods and almost done - yet again - something like this reminds me how awful this whole ordeal has been.... and how awful it is for any family to have to deal with.

Pancakes for breakfast, lunch and dinner!

Swapping out my Nurse's hat for a Short Order Cook's, while Callum deals with another round of unrelenting steroids. 😩 Getting ready for a week of crazy food requests - at least this is our last round of steroids!! 👍🏼

Day 1, Cycle 7 (of 7!)

Today is the first day of Callum's last chemotherapy cycle! He had his usual lab draw and pentamidine (antibiotic breathing treatment), as well as one of his last Chemo IV (vincristine) doses. Next week will be his last via IV! He has roughly TWO months left - I can't believe it. 🎉🙌🏼💖👊🏼