Callumism of the day

"Medicine doesn't hurt. It just tickles me. Only pokies hurt me."

Said after today's clinic visit where we had his weekly lab draw to check his blood counts. Unfortunately, his numbers are down, which means he's neutropenic again (and means this next week we'll be a bit more on lock down).

What a bummer. But this is our life!

Here's a pic I took yesterday after picking up another used play structure for the yard. This one is a little bigger than the other one, which he's rapidly outgrowing as his strength from the old days return. :)

My second TBT contribution

A good one. Callum, Logan, or Jon? ;-)

Loganism of the evening

Mommy, when I get married, I'm going to be nicer than you, to my kids.

Where's Callum?

Callum thinks we can't see him, with this awesome hiding space of his.

Loganism of the evening

When is Daddy's work going to give him a break?

LOL!! :)

Happy Memorial Day!

Logan really wanted us to go to Golfland today, to play miniature golf. So, that's what we did - we had a great time. :)

And, guess who was the big winner?!? Yep, Logan played us all, the little shark.

Hole in one!

Play date!

We went to the Jodoin's house this evening to hang out since we haven't seen them in ages. The boys were SO. EXCITED. (All of them!!)

It was especially special for Callum who hasn't gone to a friend's house since his diagnosis. Often times throughout the evening, I saw him laughing wholeheartedly while running through the house. He just seemed so terribly happy to be with his friends and outside of his house for a change. Of course, Logan also had a great time seeing his buddies, and Jon and I had fun catching up with Jenn and Jarrod after not having seen them in so long.

So glad we all got out for a change. :)

Just another lazy Sunday

I'm so glad the boys are best friends. They woke up chatting and playing together, letting Jon and I sleep in a bit. They often drive each other crazy but when they are getting along, it's amazing to watch (and listen to) how close they really are.

Results

So, our calculations were correct this morning, as I got confirmation from Logan's teacher that he indeed completed 12 laps at his school's Walk-A-Thon!  A surprising amount for our little guy and we couldn't be prouder!!

I also tallied up his pledges this evening and am happy to report Logan raised $2000, all by himself!!  (Actually, it may be a bit more after I calculate final numbers, since Apple will match anything that we contribute)  He is particularly excited about this - since it's such a large amount!!!  Yay!!  We are so thankful for our strong community of friends and family who are supporting us each and every day.  I'm sure the American Cancer Society will appreciate the support as well - thank you!!!

I didn't have my good camera with me, since I needed to keep Callum close by, but I did try to take several pics of the pandemonium from the morning, to document the event.  :)  And, another mom caught a few of us too, that she sent to me.  :)

Aaaaand, they're off!

Logan started off very cheery, excited and strong - running most of his first few laps.  But alas, after about 4 laps of running (with some rests in between), he started to wear out.  :)  About then, he ran into a buddy of his - so the two of them slowed their pace dramatically and moseyed along like two old men, chatting about who knows what the entire time.

(Here's Logan, introducing me to his buddy as they walk by)

After a few more laps, I tried to encourage the two to pick up some waters on their next lap, which they clearly weren't thinking about (but would complain anytime they neared us and saw me).  Finally, we just grabbed a couple of waters for them, and Callum handed one out to Logan on his next lap around, which was fun for both of them.  :)

As he neared 10 laps, Logan began asking me to count how many he had done (each of the kids had "bibs" that they wore on their back, which the teachers would stamp each time they completed a lap, so that we'd know how many laps they'd completed).  After I counted 10 (or so I had thought, it turns out later I miscounted and he had actually completed 11 by then), he had decided enough was enough, and wanted to stop and relax.

But, we still had a few more minutes left of the Walk-A-Thon, so I asked Logan if he'd be up for one more lap, if Callum and I walked with him.  He excitedly said yes, so off the three of us went!  I snagged one quick pic of the three of us holding hands, but as you can see, it's not that thrilling.

As we walked, Logan yelled out to several of his friends who we passed - Hey!  Look!  This is my brother Callum!  He has cancer!

It was pretty damn adorable.

Thankfully, one of the pics our friend snapped was of the three of us!  I'm so happy she did (even if my outfit isn't particularly flattering on me, just disregard that for now).  :)

Callum got his hand stamped for his single lap, since he didn't have a bib on, which pleased both boys immensely.

After the walk, all the kids lined up to grab bagels and then headed back to their classrooms for the day.  Here's the champ resting after a pretty big workout.  We really enjoyed the event, and can't wait to do it again next year!!!  Thanks again to everyone for your support!

Treasure!

I basically have Bruno Mars on repeat because it's the only thing Callum wants to listen to, to and from the hospital.  :)

Also, yesterday, I posted this on Facebook as my first "Throw back Thursday" post - it's so amazing, I couldn't NOT share it.

Walk-A-Thon

I can't remember if I had mentioned it on the blog earlier, but Logan's school does an Annual Walk-A-Thon, where all proceeds collected go to the American Cancer Society.

Logan was very proud to raise money and participate - and he was super excited that we were all there to cheer him on. :)

I'll post more pics later but here's a sneak peak as he started off. See how cheery he is?! Yeah, he got a little grumpy and tired toward the end. ;-)

But he was a champ! And while we don't have the official count back yet, I believe he walked 12 laps - so great!! I will be very surprised if he hasn't raised the most money across all students this year. ;-)

There he is again!

Running out that door!

Our 5am draw came back with two thumbs up (0.16), so we were discharged and home by about 10:30am. Woohoo!!

Now we get to relax a bit. I had my schedule wrong last time I posted. We don't actually have to go back to the clinic for vincristine next week or the week after! We still have to go back for blood draws once a week but otherwise we get a little break before we head back for another high-dose methotrexate admission, in 3 weeks.

Anyway, now that we're home, the two of us are just relaxing and getting a few chores done before heading over to pick up Callum's much missed brother. :)

Almost there!

Our Hour 24 level was 9.56, which I thought was terrific compared to last time (last time it was 23.37!).

Because the number is below 20, they don't increase fluids or take additional blood until Hour 48. But I thought man, if Hour 24 was so much better than last time, let's take an Hour 42 draw just in case!!

So, I talked our team into it and they ok'd it (I didn't think they would but just another example of why it never hurts to ask).

Our Hour 42 level, unfortunately, wasn't quite low enough. It was 0.4. And if you'll recall, we need to be less than 0.2 to get discharged. Bummer!

So we waited for Hour 48 (4pm), and when the results finally came in this evening, it was a stinkin' 0.21!

Argh!! So close!!

His creatinine level also increased slightly, so they've increased his fluids and want to keep him another night to make extra sure everything flushes out. Our next draw will be at 5am (while he and I are hopefully sleeping), so that the results will be ready in plenty of time for morning rounds.

We've spent some time playing trains in the playroom, painting (in the pic here he's drawing a monster for Logan), and filling out his Beads of Courage necklace with all the beads I've been collecting over the past few weeks for him. As you can see, his necklace is doubled up and already completely full! Time for another strand (we still have a few beads left that wouldn't fit). :)

I also got to sneak out for a few hours and meet up with my co-workers for lunch, while Jon hung out with Callum. I kept debating about whether I should go since it was time consuming and out of the way - especially when dealing with the hospital this week. But I'm glad I went. It was SO NICE to see my team and catch up with everyone! We're planning to do it again in a few more weeks, which will be nice.

Chemo is done

Since we're still both under the weather a bit, we haven't gotten out as much this time around. But this afternoon we made it over to the playroom for awhile, and got a few games to bring back to our room which Callum liked.

We just finished his 24 hour methotrexate a few minutes ago, and they drew his blood to send off to the lab. Just like last time, this will tell us what his initial levels are at and will give us a baseline to know where we're starting from.

And now, more waiting. ;-)

2nd Admission - We're a go!

Everyone seems a little concerned about Callum's cough (and my cold), but not enough to stop his chemo or admission today. So, we were a go!

His LP procedure this morning went fine, without a hitch. He went to sleep asking me a question and he woke up asking me a question (I felt like we just picked up where we had left off, but he was asking a different question). :)

After, the paramedics came as planned and swept us away. Callum was MUCH less nervous and a lot more friendly with everyone. This ambulance didn't have a TV but he was content playing on his iPad. Second ambulance ride in the books and he's acting like it ain't no big thang! ;-)

Fort time!

Lightsaber wars happening under the fort. ;-)

(Logan's wearing a mask since he now has the initial signs of the cold that Callum and I are fighting. The good news is that I'm feeling a little better this morning, so hopefully everyone will be back to 100% very soon!)

Callumism of last night

Last night all Callum wanted to do was tackle me and then get showered with tickles until he couldn't breathe. The way he asked, however, was pretty funny.

"Mommy, when you're done with your dinner, can I sit on your face and you tickle me?"

:)

Callum started a little cough and runny nose earlier this week and unfortunately, I think I've now caught it. :( He's doing pretty well, other than the cough (which, if it gets worse, the drs may delay his LP procedure on Monday, so we'll be playing things by ear).

I, on the other hand, have been hit pretty hard with the cold - it started late Thursday evening and got worse through the day yesterday. So, I'm taking advantage of the weekend where Jon can help out, and trying to lay low and rest as much as possible. The last thing we want is for me (or Callum) to be miserably sick while in the hospital next week. :/

My afternoon scare

I had just gotten back with Logan from our field trip today and after settling both boys down, lay down on the couch to relax for a few and catch up with my Dad on how the day went.

Soon, from the living room around the corner, we heard Callum call my name. Mom, can you come here?

I walked into the living room and there stood Callum, smiling very proudly at me.

Look Mom! I took it off all by myself!

He was showing me the dressing for his port, which was half removed and dangling from his chest.

The needle still looked in tact and in his chest, and he didn't seem to be in any pain. However, the whole point of keeping the dressing on is to protect the port from any potential dirt or infection, while a needle is in and the port is "accessed".

So yeah. Seeing that, I jumped into a bit of a panic.

Oh my God what have you done!

And immediately moved him to the table, set him down in a chair, put a mask on him and tried my best to cover the dressing, tubing, and all, with some press and seal as a cover.

Meanwhile, I grabbed the phone to immediately call the clinic. And by then, Callum had broken into hysterics, so my Dad was trying to calm him down while I tried listening to the menu tree to know which number would get me to the on call nurse the fastest. Ugh.

I left a voice mail explaining what had happened and then sat with a sobbing Callum in my lap, for the call back with further instruction. He still wasn't in any pain, but he knew the press and seal meant a visit to the doctors would follow - so between that and my panic "oh fuck" mode - I think I had scared him a bit. Luckily, he seemed to calm down and even almost drift into a nap on my lap, while we waited.

The nurse called us back pretty quick - and once we discussed why his port was accessed at home (he had chemo on Monday and we decided to leave it accessed since we had lab draws to do tomorrow), she said to me, ok Mom, I'm going to walk you through removing the needle.

I was afraid of that.

It really wasn't so bad, just the whole ordeal in general was unsettling. Thankfully my Dad was there to hold Callum (down) while I got us all masks, scrubbed my hands and donned some gloves. Then with a little instruction (and remembering what I'd seen nurses do before), I pulled the bigass needle out of my kid's chest.

Callum was crying the entire time - but mostly again just scared than anything. And I think he still thought we'd have to go to the hospital. So when he realized I pulled the needle out and that meant we didn't have to go anywhere, he was back to his usual self again pretty quickly.

Here's an after shot I quickly took of our mess on the table when it was all done. You can see the wad of adhesive (dressing) under the needle sticking up in the middle. Luckily we have a sharps container, so after a little show and tell to the boys so they could see it up close and personal, we dropped the needle in our container, slapped a bandaid on Callum's chest, and resumed our task for the evening (very important -making Popsicles). :)

Phew!

We survived!

It was crazy hot and now I need a nap. ;-) But, we had a lot of fun.

Pray for me

I'm assigned to Logan (of course) and one of the most hyper crazy kids I've ever seen. :)

The tough part is he tends to run off without a moment's notice. But the nice thing about it is that he's getting Logan out of his shell a bit more. :)

Bus ride!

My two kids for the day. They are BEYOND excited about the field trip today. ;-)

Just another day

I meant to blog a proper post on how Monday's vincristine administration went, with a few fun pics, but after we waited (FOREVER) for a simple 1 minute dose, we were pretty spent.  We also picked up Logan from school for the first time (Paul had been taking care of logan drop offs and pick ups while staying with us, but he had to return back home for work a couple of weeks ago. I got a few Mama friends to help out on pick ups after school last week but decided I'd try juggling it on my own this week!)  And, it was a scorcher outside.

So, all that meant that by the time we finally got home, we three just wanted to rest and relax and not think much about doctors or nurses or blogging or homework or anything else.  ;-)   (actually, we truly skipped homework!  Logan has been having a rough time the last couple of days with either some growing pains or a pulled muscle in his leg, so I gave him a night off on Monday while he laid up on the couch icing his leg).

Callum was actually in a great mood for most of the time we were at the hospital and SUPER goofy while we waited for the nurses to examine him and administer his chemo.  He was really interested in his port and how they accessed it, but because of how high it is on his chest, he couldn't actually see it.  So, I gave him my phone, on camera mode, so he could see himself in the picture.

He thought this was pretty cool but more than anything, he was jazzed that he could take a hundred (or more) selfies.  I posted a quick screenshot of those, when I got home later and discovered just how many he had clicked :)  but I pulled out one that was one of my favorites - a genuine happy smile from our little guy.

This really was him most of the visit (save for accessing his port where he was a screaming traumatized mess).  He was all smiles and dance moves and jiggly butt anytime the nurse walked in (which embarrassed the heck out of her).  Ha!  Here is a shot of him in action, dancing to something on the TV in front of him....

And then when it was FINALLY time to administer chemo, he insisted on helped her push it in (he didn't actually help with the chemo, but this is him helping flush his line after it was done).

Other news: Callum just finished up his 7 day stint of steroids (and a few other drugs), so Monday morning was back to our relaxed "very little" drug routine - yipppeee!!  We are both enjoying these breaks quite a bit.  ;-)

Besides the hospital visits, we tend to spend our days hanging out at the house doing chores and odd tasks I've had on my to-do list forever.  :)  I've also started trying to work out a bit again (I'm hoping it'll help with my back), so I take a short break from Callum and hit the elliptical machine in the garage each morning.

Lately, I've also been spending a lot of time on the phone dealing with (buffoons regarding) medical related topics.  Monday it was all about rescheduling our appointment later this week.  Man oh MAN do I like our doctors, but I can't STAND the schedulers!!  :(

Anyway, we had a lab draw appointment for this Thursday, to check Callum's blood work for next Monday's hospital admission (remember, we have to make counts each time prior to admission).  However, Thursday is also a field trip day for Logan that I've signed up as chaperone.  Originally, Jon was going to stay home to hang out with Callum and take him to his appointment, but his work schedule got turned upside down and he now has a Thursday morning meeting on calendar that he couldn't get out of.  Ugh.  :(

So, I called the clinic to reschedule the lab visit to Friday, which they weren't sure they could do - I told them I was sure we could do it, but if they really felt the need then to call my doctor ASAP to confirm and call me back ASAP to get the new appointment on schedule because I've gotta juggle who is going to watch who, and when (hellllloooo people, we still do actually have lives other than hospital visits to manage).  :/  

Aaaand, no call back from them meant I sent a very direct email to my doctor (who replied almost immediately, yeah no problem, move it to Friday) and then a call back to the clinic to say MOVE IT.

Yesterday, I had a similar phone tag marathon, but this time with the pharmacies.  We're running low on Miralax, which we have to give Callum daily, so I asked Stanford to transfer the prescription to our local pharmacy at CVS (easier for us to pick up).  They said "Oh, CVS has to call us and request a transfer."  I said hmmm, that's not entirely true - you've transferred for me before.  Well, that must've been an issue that we were helping you deal with (it was).  Annoying, but ok fine.

So I called CVS and asked them to call Stanford to transfer the prescription to them and then fill it for me.  Sure no problem, they said.  A few hours later, they called me back, to let me know that our insurance doesn't cover it.

I said hmmm, that's not true - I filled it at Stanford and insurance covered it.  Are you sure?

Yes, sorry.

Ok, fine, maybe there's something weird about the insurance covering at Stanford but not at CVS.  Since I don't need it immediately, I'll just have Stanford fill it and pick it up the next time we're there.

Ok, but you'll need Stanford to call us to transfer it back.

OMFG.  Fine.

So I called Stanford, who said well that's weird, insurance should've covered it since they covered it for us.

I said yep, I agree, but I'm not paying out of pocket if we know it's covered through you guys so please take it back and fill it and I'll pick it up later this week when I'm back at the clinic.

Oh, sorry ma'am, we can't.  Now that we've transferred the prescription out, you'll need to call your doctor and have them write a new prescription for us to fill.

ARE YOU FUCKING KIDDING ME?!?

So I said no, that's stupid.  It's a good prescription with a few refills left that YOU HAD LESS THAN 24 HOURS AGO.  I don't care who you need to talk to, BUT FIGURE THIS SHIT OUT.

She puts me on hold, then comes back and says ok, we'll call CVS and transfer it back later today after the pharmacists return from lunch.

I can't believe how idiotic the bureaucratic bullshit is that we have to deal with, and further, I'm sure most people don't question or push back, so how even MORE awful for them to have to deal with these constant runarounds.  :(

BUT.  Here's the topping on the cake for this story.  A couple of hours later, CVS calls me again, to let me know they talked to Stanford, sorted out the insurance coverage, and they've got our prescription ready for pick up.

Awesome, right?

A serious boy and his donut

We were supposed to lay low today. We were both tired from yesterday (even tho everything went well with his chemo administration it was still a long and tiring day at the hospital filled with a lot of waiting). And to make matters worse, I woke up just feeling crappy. Crampy with bad back aches and a headache. No bueno.

Then Callum got it in his head that he wanted "cheese crackers" which is a very specific type of cracker - Trader Joe's Gorgonzola cracker (I think it's funny my 4 year old has already developed a sophisticated taste for Gorgonzola! Haha!!) - so that meant a trip to the store!

Which was fine because it got us out for a bit. And then I also got my coffee fix in while he got his donut fix in. A win-win! ;-)

The digital age

Callum took 166 selfies while getting chemo today. It was either that, or listen to him whine about wanting a hot dog when we got home. ;-)

Courageous Kids Day

Every year, the American Cancer Society partners with our local amusement park, Great America, to host a special day called the Courageous Kids Day, for children fighting cancer (and their families).  Our social worker mentioned the event to me last week, since she has been helping us most recently on ideas to help Logan feel just as loved and included, as Callum, in the family (more on that later, but suffice to say, he's reacting normally, as any 6 year old would, to the changes in our lifestyle, and sometimes has trouble with receiving less attention than his brother).   She thought the day might be just as fun for Logan, as it would be for Callum.

As it turned out, it was much more fun for Logan than little Callum - mostly because, I think, Great America is still really too old for both the boys, but I think Callum was also feeling more crummy and just wasn't into going out at all today.

But, we did try to make the best of it!  It was Mother's Day after all!  Who wouldn't want to be walking around in the blazing sun, roller coasters buzzing overhead and kids high on sugar racing around and cutting you off as you walk through the park?!?

The boys rode on the carousel (a couple of times), when we first walked in.  I tried to capture a number of pics of Callum but he was too far away and hardly ever looked up to smile.  ;-)

Logan was VERY interested in the carnival-like booths that you'd pass every 10 feet, so we did a lot of observing and watching (and he begging to us to let him play).  I told him he could play one game out of the entire park, so to choose wisely.  He decided on a bowling ball game (because hey! surprise surprise, it looks easy) and lost every single time.  He was SO frustrated afterward - a tough lesson to learn, that these games were actually much harder than they looked, and designed that way, to take your money.  He still didn't quite understand why it was so hard, and he still asked to play a few more games after, but for the most part, he was okay with it.

Later, we got to the area that the American Cancer Society has roped off just for us families visiting (the park is actually open to the public) - and inside this area they had food and ice cream and soda galore.  Games and sand pits and balloon making clowns and musicians.  Logan ran up to me with a big ice cream cone, exclaiming, Mom!!  Here, all the food and games are FOR FREE!!  :)

Callum got pretty grumpy toward the tail end of our visit - and as suspected, he was in desperate need of a nap, and fell asleep in the stroller on the walk back to the car.  Logan was also pretty tired (we had stayed up late the night before visiting my parents and brothers for a nice family dinner) and conked out (most uncomfortably-looking I might add!) on the ride home.  

The boys got cool hats along with some other goody bags from the day's event.  I got a fun Courageous Mom corsage, so I thought I'd take a "selfie" to document it, when I got home.  ;-)

And finally, a couple more "selfies", taken by each of the boys, today:

 

Happy Mother's Day to all!!