Wednesday, July 30, 2014
There were a few "isms" mentioned during this time which I thought were pretty funny....
Logan: I agree with Mom.
Me: What do you agree with me on?
L: He's [Callum] being way too loud.
Logan: Why are there so many commercials?!
Me: Because you're watching live TV.
L: Well I hate live TV.
Callum: Mama, it's dark outside. They [Logan and my dad] should go home and we should go to sleep.
And then today, after Logan got home from camp, he announced to me:
I gave Callum a dollar because he promised to be my best friend forever and crossed his heart too.
Callum's ANC did go up a bit today, just slightly, but not down and that's the good news. The team felt confident that he's on the rise since another number increased quite a bit from yesterday, which is a precursor to everything else recovering right after.
The pic here is my view of Callum when I look down on his chest and talk to him as they remove his dressing and de-access his port. You can see how bruised and raw his skin is from all of the prodding these last several days. :(
Tuesday, July 29, 2014
That's all to say I think cabin fever is hitting us more today than before. Poor Callum was begging me to go home earlier in the morning. We try to occupy our time with various activities, like beading more necklaces (this latest stint has definitely earned a handful of new beads!) and checking out the nearby fish tanks. But, no matter how much we try to do, we are still bored out of our minds. :)
Hoping tomorrow's ANC continues to rise so we can get the hell out of here!!
Monday, July 28, 2014
We just had a little chat with Logan who we miss dearly and who misses us dearly. The first thing Callum said when he heard and saw Logan on FaceTime was "I love you Logan!" :)
And then they proceeded to make disgusting sounds and share mouth and nose hair close ups. Ahhhh, brothers.
I suspect it was harder for him because he's likely sore from being accessed for a week. But the nurse certainly didn't help - it felt like she was operating under molasses - every movement of her's was slow as hell and I finally had to tell her to just get on with it and go (in as nice a manner as I possibly could with my freaked out kid screaming and squirming in my lap). :(
After it was all done we put an ice pack on him since he was screaming of the bandage itching him. I think it's due to his skin being sensitive and raw from this last week and not liking more adhesive put on, more than anything. Once the cold ice kicked in, I got him to calm down enough to fall asleep.
Hopefully he'll take a nice nap and feel better once he wakes again, poor guy. :(
We made it to the playroom, but it was super busy since they were also handing out toys (for kids to take home). Callum grabbed a toy and a coffee mug (to paint) and immediately commanded we head back to our room. :(
But, he was in good spirits about his new toy (which needs batteries so now I have our nurse on the hunt for some!) and mug, which he painted for Logan.
Apparently it's not a coffee cup but a hot cocoa cup. :)
It's been a week since they first accessed his port, which means we have to change his dressing (the adhesive around it) and, what I didn't know was, we also have to de-access and re-access his port. This means pulling the needle out and then poking him again. :(
I was really hoping we wouldn't need to do the dressing change today, and that we could just take everything off and go home. But, unfortunately, his counts decreased again overnight. He's still neutropenic and in fact his ANC is the lowest it's been. *sigh*
So, we are staying another night, at least (possibly more since they want to see his counts start to recover before we can go home). It's starting to get harder for both of us, being gone so long. I think we're both really missing home a lot and just getting tired of this hospital routine, filled with constant interruptions and meds and visitors and sitting in one room. Callum had a little meltdown last night while we were playing Candyland and cried himself to sleep, sobbing for his Daddy. :(
Since they're giving him a break from his access before the next set of meds, I'm going to see if we can go to the hospital playroom or maybe take a bath or something different. We'll see if I'm successful. ;-)
Meanwhile, Logan is also having a hard time since he misses us both too. Definitely a rough patch we're going through but still hopeful Callum's counts will recover soon enough. The good news is that everything else looks great - he continues to be fever free and in good spirits. You'd never know he was as sick as he is by just looking at him!
Sunday, July 27, 2014
However, his counts are still a little low - we really thought we'd get discharged today but his counts dipped again a little from today's blood work, so the team wants to keep him another night for monitoring. :( The attending suspects he had a viral infection (of what, we don't know, since all tests came back negative, but they really only catch a handful of the major ones).... So the lower counts are probably due to bone marrow suppression from the virus, however he wants to make sure the fever doesn't return (and if he let us go home, that would certainly mean an ER visit which they always try to avoid).
They also removed him from fluids today, which Callum likes since he's "free" from his pole. They'll hook him back up later to administer his next dose of antibiotic, but otherwise they're ok keeping him off. They also stopped one of the antibiotics, vancomycin, which the attending says is a bit of a test, to see if the fevers will return or not.
So far so good! Keep your fingers crossed we have another great day and counts start to recover so that we can (finally) head home! I, for one, am sore and tired and missing my bed. ;-)
Saturday, July 26, 2014
We were going to try the new Hawaiian Shave Ice place that just opened up but of all days, they're closed today! So we're making an ice cream pit stop instead. :)
As it turns out, this type of reaction is pretty common after an infusion of vancomycin (the new antibiotic they have added to his treatment), so common that it's called the Red Man's Rash or Red Man's Syndrome. :( Luckily it goes away pretty quickly (we gave him an antihistamine and we got Tylenol in him for the fever). Subsequent doses have now been slowed down over a 2 hour infusion (rather than 30 min - 1 hour) and that seems to have done the trick as he hasn't had any more reactions with the rash. Phew!
Still, pretty crappy and no fun at all. Ugh.
Friday, July 25, 2014
This morning, Jon brought Logan up for a visit. Logan really wanted to stay with us today (instead of going to camp). He's been missing us quite a bit, and we have missed him as well.
They're cuddled on the bed watching some TV right now and we're just waiting for the doctors to stop by for their rounds to see what today's plan of attack is.
Callum has continued to spike a fever as the Tylenol wears off which is worrisome but also seems to be par for the course (we had another long rough night where he spiked and couldn't fall asleep for a few hours). The doctors really don't know what's causing the fever but suspect at this point it's viral (since the fever hasn't calmed down with the battery of antibiotics he's on, and since all blood and urine cultures and stool samples have come back negative so far). They came in to do a nasal swab earlier this morning which will look for some tough viruses (and even things like the flu and cold), but even if we find the culprit, the same treatment would prevail - continue to hydrate, rest, monitor and manage the fevers, and wait it out.
Thursday, July 24, 2014
Unfortunately, we were both restless most of the night and didn't sleep well. Callum due to his fever which kept spiking and me due to my poor guy tossing and turning. :(
Today is a little better now that we're finally settled in and the nurses have a better handle on getting his meds in on time. He's still feverish, spiking about 5 hours after each Tylenol dose which means to me the Tylenol is just keeping it at bay, but not much else. :/ a little bit of good news though, is that his counts from this morning have improved and he's (technically) no longer neutropenic! We can't get too far ahead of ourselves, since his counts could easily drop again as he fights this fever, but showing a small increase in numbers is definitely a good thing.
During the few hours after each Tylenol dose he's back to his old self, for the most part. So during those pockets of time we've been doing things like painting, which Callum has really enjoyed. :)
Wednesday, July 23, 2014
We had also just been talking earlier in the morning, during rounds, that his counts came back low from his morning draw and he is neutropenic. So, unfortunately, being neutropenic *and* having a fever, meant they'd need to arrange a transfer back to Stanford where there's more immediate support, staff and meds available quickly if anything more serious were to happen.
So, because of the fever, they immediately took blood and urine cultures to run (but results from those don't come back for a few days). And they gave him another antibiotic (in addition to what he's already on, for his ingrown toenail).
His state was rapidly declining, so he had a cat nap in between the flurry of doctors coming in and out to examine him and nurses medicating him. (I think it was overwhelming for both of us). He was burning up and feeling absolutely miserable, refusing to take any Tylenol which I was begging him to take. I finally had to force it down him, which was just awful for both of us. That was about an hour ago - so I'm sure it's kicked in now since he looks 100x better and is even watching some TV (he wouldn't do anything but curl up in a ball on my lap earlier, which had me really worried).
Now we're just waiting for our transport to arrive so we can head back up to Stanford.
Sadly, all of this means our hopes of going home tonight have been rudely dashed. Now we'll be lucky if we go home before the weekend (since he won't get discharged until he's been clear of his fever for 48 hours and his counts recover so that he's no longer neutropenic). What a big bummer. :(
Tuesday, July 22, 2014
Usually, Callum wants to sleep with me, so we cuddle until he falls asleep and then I transfer him to his bed for the night. Then he'll wake up at some point in the early morning and ask the nurse to move him back with me, to my bed.
This morning when he woke up, he asked me if he could lay in my bed for a bit. I asked him if he wanted me to lay with him and he said nah, you can lay in my bed. Jeez, thanks for that! ;-)
We started our chemo later than usual (for us) last night. His pee levels weren't clearing (they hydrate him before chemo with a bicarbonate, which coats his kidneys and alkalizes his pee - since the chemo is so acidic they want his pee to be more basic than usual to neutralize the acidity). So it wasn't until 6pm that we actually started the methotrexate. Ugh! I just hope all that extra fluids before the chemo may help us clear by tomorrow! :)
Monday, July 21, 2014
The paramedics have been the same team for the last four trips so they have gotten to know me and Callum well - like, the fact that they need to go into the elevator at a certain angle, allowing Callum to push the buttons for us. ;-)
We'll start up on his high dose methotrexate shortly!
Taken last night after their baths, Jon is reading the boys a few pages from their new favorite: a Calvin and Hobbes collection book.
Right before this they were both laughing hysterically. It's pretty cute!!
Friday, July 18, 2014
Sadly, the swim center had "an incident" in the other pool (I'm guessing a kid pooped), which they had to clean. So, the other pool (with the kiddie/play section in it) was closed. The boys were VERY bummed about not getting to play after their lessons (near meltdown status bummed), so I talked them into going to the new park Callum and I visited earlier this week, since it has a water feature which they could play in.
Logan was also very insistent about having a picnic. So, we ran home, grabbed a few more snacks (and Callum's antibiotics which I have to give him 3x a day - ugh!), ran to a nearby Mexican restaurant to get food (since Callum is a creature of habit and insists on a bean burrito plus chips and beans after every swim lesson), and then finally headed to the new park. Phew!
Thursday, July 17, 2014
Whoops! Guess I'll have to get on that at some point. ;-)
Of course, the minute we arrive, another kid is playing a video game so the boys quickly made friends with him in the waiting room. And then during Callum's blood draw, Callum hardly yelped or winced once! LOL But, Logan did get to see the blood draw and see that most of our time is "boring", spent waiting around and talking to nurses, which I suppose is good.
I did have one of the nurses look at Callum's ingrown nail while we were there, since it seemed more inflamed last night (and I squeezed out a tiny bit of pus!) :( She wasn't super alarmed but we have decided to play it safe given his counts are a bit lower today and we have a hospital admission planned next week. So, I've now got to give him an antibiotic cream and oral antibiotics 3x a day...
The boys were getting super grouchy as we neared lunchtime so we made a quick stop at the "sandwich shop" (where Logan was proud of his new invention, Cheetos inside his sandwich). ;-)
Next up, on our way to check out a new kid's museum in the area!
Wednesday, July 16, 2014
So, I had him soak it for 20 minutes in warm water with Epsom salts, which he thought was fascinating. After the soak I put some neosporin on it with a bandaid. I'll check it again in the morning in case we need to soak it again. The last thing we need is an infection to deal with. :(
Tuesday, July 15, 2014
Monday, July 14, 2014
So, after our clinic appointment, we had lunch and then hung out at home for a bit before heading back out to his swim lesson. Each lesson he improves a bit more - and always has a ton of fun - it makes me think we may have a little fish on our hands! :)
Today, before class, he asked me when he'd pass onto the next level - I explained to him he'd need to show Mr. Albe that he could roll over from his stomach to his back, two times, on his own. While he hasn't mastered the rollover on his own yet, he's doing great with his back float (check it out - all on his own!)!
It's only a matter of time. ;-)
It was a little strange for me, when I gave notice. I've held a job most of my life, so being unemployed is an unknown concept to me! :)
On the other hand, taking care of Callum (and the family) right now is a full time job on its own, and is our top priority.
So really, I think of it more like reducing my hours and the number of hats I wear every day, every week. ;-) Now, instead of juggling two jobs and wearing myself thin, I'll have a chance to focus on the most important job of all (and perhaps gain back some sanity over time?!). One can only hope!
The other two pics are all about food! ;-) He really wanted to head to the "sandwich shop" (Subway) today, so we went there first where he inhaled his sandwich (and asked for another but I said no). After, we walked next door to the "coffee shop" (Starbucks), where I got a drink and he got a few scones for dessert!
He's been in a great mood today, so all in all we're doing well!
Sunday, July 13, 2014
Here's a few fun pics from our afternoon. The first is Callum next to his best bud Ryker (plus Ryker's little brother and Daddy) on their porch swing which Callum loved. The second was during a quick snack break where Callum was acting pretty silly but in a great mood (the kid in the orange shirt is a neighbor who stopped by to play too). :)
Friday, July 11, 2014
Thursday, July 10, 2014
Anyway, we had another swim lesson yesterday. Callum did so-so in his lesson but finally warmed up and had a great time in the free swim area (jumping and dunking himself non stop).
He's been a little off and out of sorts all week. I had forgotten to mention that in addition to being back on vincristine this week, we're also back on another pulse of steroids. Ugh.
And by yesterday, it felt like they were starting to kick in. Since, after swim class his requests were to first go to our (usual) taco place (the last pic shows him chowing down on his chips with beans, a bean burrito - which he almost finished completely!, and his yummy horchata). After that, he wanted to go to the spaghetti place, the hummus place and then home. And then after home, the coffee shop. LOL
Suffice to say, we made it to the taco shop and then he passed out when we were back in the car (phew!).