Thursday, September 29, 2016

Sunday, September 25, 2016


First thing early this morning, a couple of the doctors dropped by to chat and check on Callum. And a couple of hours later, we were working thru our discharge paperwork and packing up!

Callum still has a nasty cough, which bothers me more than usual, since we won't be able to reschedule his port surgery until the surgical and anesthesiology team feel comfortable about his health. :(

We go back on Thursday for our discharge follow up, where Callum's oncology team will evaluate him and decide on his next surgery date. Hopefully it's sooner than later!! We all would like to see his port out as soon as possible, now that he's done with treatment. :)

Saturday, September 24, 2016

Doing well

Callum has been doing a lot better today. He didn't have any fevers throughout the night or at all today and his heart rate has returned back to where we want it (around 100 or just under).

He's been coughing a lot more though, which has been tough on him because he's been getting tired of it (and I'm sure his throat and belly are sore from all of the coughing). :(

During rounds, the doctors have said as log as he doesn't have any more fevers, they plan to discharge us tomorrow. I've heard it before, but interestingly, now that we are "post treatment", they don't do blood checks on his ANC, so this feels more like a sure thing.... Not sure why, but it definitely feels different, like they are less concerned, or maybe that's not it exactly, but more that they are more confident he'll be ok. :)

Anyway, we have a follow up scheduled for Thursday (it's his monthly exam, lab check and pentamidine appt), which will now turn into an appt to listen to his cough and decide when we should reschedule his port surgery.

Hopefully we can get on the books soon - because the catch 22 to all of this now is - his line isn't really helping us anymore, as much as it's allowing a potential contamination site that we need to be concerned about (it's always been a risk to be aware of, of course, but the benefits of being able to infuse chemo and draw labs, etc, outweighed the risk of infection during treatment).

Friday, September 23, 2016

One last hurrah?

About 3:30am last night, Callum woke from a coughing fit and was having trouble falling back to sleep. I laid down with him and noticed he was shaking violently. Chattering teeth. It basically seemed like extreme chills, except that he didn't feel hot. I took his temperature and he wasn't feverish - so we thought, maybe he's just anxious about the surgery tom dorks? but no matter what I tried to do to get him to relax, he couldn't calm down the chills.

After about 15-20 min of this uncontrollable shaking, I finally asked Jon to call the on-call doc. After a few minutes of chatting, they said we should bring him into the ER, just to be safe.

As we were getting dressed and packing up to leave, he threw up all over the place. It didn't feel like a good sign. :(

We checked into the ER about 4:30am. I could tell he was getting warmer and warned he docs he might be spiking a fever soon. They got fluids, Tylenol and antibiotics in him pretty quickly which was good. Even still, with all of that pumping in his veins, his temp creeped up to 100.5 (I wonder what it would have hit without all of that!).

Lab results came back and he was not neutropenic, which was good to hear. But his heart rate was really high - averaging around 150, and spiking up to 175 at one point (his normal HR sits around 100 or so).

So, even though he wasn't neutropenic, the doctors decided to admit us. They didn't like the fact that his temp was creeping up nor the fact that his heart rate was so high (does anyone but me have deja vu?!? This is what happened to him about a month into his treatment - when we were preparing to get his PICC line removed and get his port line put in!!) :)

About 7:30am or so, we were admitted to our room and walking thru the new team of docs and nurses on what the last few hours have been like.

Callum's surgery was, of course, canceled. I asked the ER staff (dr's, nurses, whoever would listen) to let the surgery center know we were in the ER and wouldn't be making our 6am check in. Multiple people said no problem, they'll be notified, don't worry about it.

And then I got a call about 7:15am from the surgery center with a "Hey, what happened to you? Are you guys still coming??"


He's been doing much better all day today. He's had a couple moments where he doesn't feel well and complains, but for he most part, his miserableness went out the window the minute we entered his inpatient room.

Over the last couple of months, Callum has lamented to me several times, how he's going to miss the hospital stays. I've half joked to the staff that this must've been his way of getting one last hurrah in before we were finally done. ;-)

I've also been joking with the staff about how ironic it would be, if he has an infection in his line, which requires them to pull it out. I don't think that's what's going on - we all suspect it's just this cold/virus he's been fighting. But still, the timing of this all!

Right now, the plan is to keep him under observation for at least 48 hours. So, the earliest we'll go home would be Sunday. All of us feel like that will likely happen, given how well he's been doing today (no more fevers, even after the Tylenol wore off, and so far the blood cultures haven't grown anything - which is good!). But you never know how these things will turn out, so we shall see.

Monday, September 19, 2016

Final LP and Bone Marrow Day!

Callum had his final lumbar puncture and bone marrow aspiration today, which make a total of 18 LPs and 3 bone marrows in our little guy's life!!  EIGHTEEN!!  Can you believe it?!? 😱

Callum's back, covered in cream, as they prep him for his procedure

Both Jon and Logan took the day off to hang out with Mr. Callum.  It was nice to have the whole family together for such a big event.  I was actually more nervous than I've been in the past, so felt quite relieved when he was done and back in post-op, resting up.

Logan, mastering one of the video games in the waiting room
Still asleep, in recovery

His oncology team was so sweet, and surprised him with a cake and balloons after he woke up, complete with song and cheers too!  🎉🎉💞👊🏼

They presented him with a Certificate of Completion, too! :)

He's been doing more of these sad faces lately - I think he's a little bummed about ending his treatment!

Our oncologist took a peek at his bone marrow and spinal fluid slides, before they sent them off to a special lab in the Northwest.  He says everything looks normal (which is good!).... we'll hear the "official" results in a few days, once they get word back from the lab.

Sunday, September 18, 2016

A child's innocence

Last week, randomly, Logan asked me if I could buy him a diary.

With a key and lock on it.

I was a little caught of guard but said something like yeah sure I'll look into it....and then forgot about it.

The next day, he approached me after school - so Mom, did you get me a diary?

Oh! You mean you were serious about that?!?

Yes Mom! I want a diary. With a key! And a lock on it!

The request brought back those innocent elementary school years of my own, when I had a diary of my own (with a key and lock!), likely Hello Kitty images slapped all over it... I have no idea what I wrote in it, but I loved having that "privacy" and independence. (And keeping something locked away from my brothers!)

So I opened up Amazon, thinking for sure every option was going to be butterflies and rainbows and we'll see how well this goes with my boy.... But lo and behold - I was totally wrong - there were boy themed diaries to be found!

And, with keys and locks!

I called Logan over to consult on which option he liked better....the one with "KEEP OUT" scrawled all over the cover, barbed wire and camo looking images? Or the one that was a silver safe with some digital looking keypad type of deal? Or one with a sleeping dragon, that turned into a fire breathing dragon (when you moved the holographic cover, we've now discovered)?

Dragon Mom. Get the dragon.

(Clearly, no question).

Oh wait, does it have a key and lock?

<we zoom into one of the images on Amazon....>


Oh cool. Get the dragon one, definitely.

The following day, the first question out of my boy's mouth, when I picked him up from school, was, did my diary arrive yet?!?

No dude. I just ordered it last night. It won't get here until Monday.... So, tell me, why are you so eager to have a diary anyway? What do you want to write in it?

I want to write about my life. So that I won't forget about it when I'm older.

Ahhhhh....well then, Monday it is!

But, because Amazon is so damn quick on these things, we got a surprise delivery today! And guess who was super duper happy about his new diary?!?

After we spent a few minutes examining how to use the (teeny weeny tiny) key to open the lock on his new diary, he marched out of the room and into another, announcing to the entire house "Nobody come in here! I'm going to be writing in my diary!"

And sure enough, he sat down at the coffee table, furiously scribbling away about "his life" (which I can't wait to read some day!). 😉

When it was time for us to head over to our friends' house, we told him he should put his diary away, someplace safe.

Where should I put it?

Jon suggested he hide it in his underwear drawer (thinking Logan was asking where to put the key).

Logan looked appalled. My underwear drawer?!? That is so gross!!

I pointed out he could put his diary on top of his dresser then, so he wouldn't lose it.

He nodded, saying he liked that idea.

So, he set his diary on top of his dresser....

And then, set the key on top of the diary. 😍

(He later decided to move the key to a box, after Jon and I pointed out you might not want to store your key *with* the item you have locked up). 😉