Introducing new members of our family

We've been discussing various options to change up our current car situation for a few months.  My Matrix has been getting smaller and smaller (as the boys get bigger and bigger), so Jon suggested we sell it, and the 4-Runner, for an SUV that I could drive the kiddos around in.  In the end, I veto'd the idea, because I love our 4-Runner and didn't want to get rid of it.  Instead I said, why don't I just keep it and turn it into my main car and we can sell the Matrix (to help subsidize the enormous amounts of gas that the truck guzzles!  hehe)

So, that was the plan.  But, then of course, the shit hit the fan and we decided well, selling the third car probably isn't a good idea right now, since Paul has been using it to get around town (he's been helping in a number of ways, but primarily dropping off and picking Logan up from school, which is TREMENDOUS).

Meanwhile, Jon had continued doing car research.  I suppose he just had that "new car" itch ;-)  and decided, with the tax breaks and gas savings and carpool lane sticker etc., that it was finally time to look into getting an electric car to help with his commute.

And, given everything that's happened with Callum, I couldn't well argue the idea of cutting Jon's commute time down (since he'd get to use the carpool lane to and from work, or hospital, etc. during the weekdays) - that would actually save us quite a bit in time and stress to have him with the family much more.

So, Jon left the house today to get my Matrix washed - and returned with this new member of the family, a Volt! (I have to say, IT. IS. FUGLY. but oh well, whatever, Jon's driving it, not me!)  ;-)

The OTHER new family member was actually a little guy I picked up during our last hospital visit - whom the boys have named George.  And, he will get dropped off at Callum's school tomorrow morning on Jon's way into work.

The "Monkey in my Chair" program is a fantastic program for pre-school and elementary school aged children diagnosed with cancer, who are torn away from school, often for long periods of time.  They miss their friends at school and certainly, their friends miss them.

Our social worker talked to me about the program, and because Callum is in a more structured pre-school, we thought it might work for him.  I thought it was a fabulous idea - because Callum really does miss his friends quite a bit.  And, his friends (and their moms) have been doing lots of fun stuff so far like taking videos of them at school or home to say Hi - which just beams the biggest smile on Callum's face anytime he watches the videos (over and over and over...).  ;-)

George, this (actually quite big) stuffed monkey, will act in Callum's place, whenever Callum is away from school.  And, his friends can send pictures back home via George (who has a backpack, and a photo album to put pictures in, and a notebook to write notes in, etc.!) who can pass those onto Callum.  Likewise, George's backpack has a little book for Callum's teachers to read to his classmates, to explain why he's not there (as well as a teacher's booklet, to help them explain to the kids, and other parents, what's going on...).

I can't praise this program enough - and we haven't even started!  But it's such a wonderful idea.  We even have a "Little George" stuffed monkey who stays home, for Callum to hang onto each day.  :)

...

I mentioned Logan had his first sleepover with Robert and Connor last night - it went well for his first time and he wants to try another again soon.  :)

As they were all driving to lunch (and then the movies) earlier today, Kim and Jenn texted me to hold a FaceTime call because Logan wanted to say hi to Callum before they ate.  So, we did - but the minute Logan mentioned they were off to see a movie, Callum broke out into the biggest tears ever.  I didn't realize at the time, that's where they were going and/or to warn Kim and Jenn ahead of time - but sadly, Callum has been feeling a bit left out (also!) because Logan has been having a terrific time on playdates and movie outings, without him.  So, I quickly ended the call and worked on calming Callum back down.  :(

Not too long after, Jenn texted me to let me know that Logan no longer wanted to see the movie and wanted to come home - he was done and they'd be dropping him off.  We weren't quite sure what had happened - and he wouldn't talk to me about it when he first got home.  BUT.  Later in the afternoon, when it was just the two of us (out at the nearby church parking lot, practicing his bike riding), he finally confessed to me why he backed out of the movie outing.

Me: How come you didn't want to go to the movies today buddy?

Logan: Because it wasn't fair that Callum couldn't go too.  I'd like to wait and see it with him instead.

I couldn't help but get a bit choked up over that.  I hugged him tight and thanked him for being such an awesome brother.

...

And finally, a fun pic from this evening.  I looked over and saw this, so I suggested to Jon that he lay Callum down for the night.  He said to me (without looking up), "Yeah, just a minute.  We're working on passing this level."   HAAAAA!!!

Callumism of the day

After he ate a bowl of broccoli, I told him let's take a break, and reminded him of when his belly hurt after eating too much yesterday (and the day before). His response?

"My belly already hurts. But I want to eat my Macaroni and Cheese. I want to eat it right now!"


PSA: Rationalizing with a 3 year old hardly ever works. Rationalizing with a 3 year old on steroids never works.

Weekend Update

We've had a pretty good couple of days.  Mostly keeping things as relaxed as possible for Mr. Callum to lounge about.

The steroids are doing a huge number on his appetite.  When he's not queasy (which we're getting better at managing, now that I'm also overlapping with a second anti-nausea drug each day), he's got a voracious appetite.  And he's VERY specific - about what he wants on his sandwich, what size to cut his bagels with cream cheese, how to lay out the various dishes on the table.

Case in point.  ;-)

Or here, where he's instructing me that one of these will be for his chicken nuggets and one will be for his Mac n' Cheese.  To make matters worse, he tells me (or Paul) how to make everything.  :)

He had a pretty rough morning yesterday - just feeling out of sorts in general.  But by the afternoon, he perked up a bit.  I got ready to go for a walk and Callum loved that idea - hopping up off the couch to join me.  He was pretty perky for the first half block, but I could tell he was starting to lose steam - so I suggested we turn around and go back, which he agreed to.

Once we got to the house, I suggested we just sit out on the lawn and enjoy the sun for a bit.  He said no, let's play some soccer!

He didn't have to ask my twice.  :) We had a blast and I kept thinking he'd freak out and get pissed off at any minute but he didn't!  He laughed and giggled and ran and jumped for joy.  It was wonderful.

All of that running around (plus one of the meds that makes him drowsy) really tired him out.  He took a nap late in the afternoon and I finally had to wake him up :(  at 8pm!!  Just so I could give him his meds.  That, of course, didn't go well AT. ALL.

But once he was awake, he started demanding food again.  I figured it was fine since it was better to have food in his stomach for his meds anyway.  Unfortunately, I didn't pay as close attention to HOW FAST he was shoveling down the food - so in a matter of about 40 minutes he had who knows how many chicken nuggets and bowls of Mac n' Cheese.  *sigh*

Sadly, this then quickly made him feel a lot worse again.  :(  And, this time, I could see it.  His belly had swollen up super big (the nurses have warned us that a side effect of the steroids is a big appetite which also means a swollen round belly and puffed up cheeks!) and I could tell it was really hurting him.  He was feeling so terrible due to a combination of gas, indigestion and generally bloated uncomfortableness, the poor guy.  So, we finished up the last of his meds quickly, tried to get him to either pass the gas on the toilet or burp him like a little (now big) baby.  

This morning we had a similar rough start where he just wasn't feeling great.  He passed out for a few minutes (before Logan and I unfortunately woke him up) on the couch - still holding onto his juice bottle like a drunken old sailer.  ;-)

But again, we found our groove and he was in a really great mood for most of the rest of the day.  Here you can see his swollen chipmunk cheeks coming out in full force!!  :)

Meanwhile, Mr. Logan and I hung out for the morning before his big day.  The Jodoins had invited him over for a playdate and sleepover today!  He was SO VERY EXCITED.  And couldn't believe he was getting to spend the night.  :)  I hear Robert, and Connor, were both equally excited to spend the day with Logan too!

Over the last few months, Logan has become more and more obsessed with Pokeman - watching the TV show, collecting the cards, learning to play the game.  He wanted me to take this picture to show off the collection that he's been stashing away.  He gets a card anytime he earns a special award at school, which he now works very hard to get each day, and which he's very very proud of.  :)

Fuck Cancer

Let's play some soccer!

Transfusion time!

Callum's hemoglobin was a bit low on Monday, so our nurse instructed us to keep an eye on him over the next couple of days.  If we noticed any lethargy or paleness of his skin (face, palms, feet), then to give her a call because we may need to do a transfusion.

I started getting a little nervous yesterday afternoon - he was looking REALLY tired at one point and pretty pale.  But, he always looks pale to me now!  So, I really didn't know what to do.  Jon and I talked about it and decided to call the clinic.  I spoke with our nurse and she said it didn't sound too urgent (his activity level had perked up) but that we'd schedule a transfusion for him first thing in the morning (today).

Callum and I left the house at 6:30am - and didn't get home until 2:30pm.  To say it was an exhausting long ass day is an understatement.  It really beat me up and I was feeling pretty spent by the time we got home.  I'm learning, that for the days we have hospital visits, I shouldn't expect or plan to do anything else that day.  :/

The visit itself went great.  Callum was very unhappy to be woken up before sunrise - and taken back to the place he cannot stand.  :(   We did a blood draw at 7am and then sat in the waiting room before we were assigned our room.  We were finally ushered back to our room by about 9am or so.

Snacking in the waiting room and unhappy to be back at the hospital

Callum's lab work actually looked pretty good.  His hemoglobin, white blood cell count, and platelet count had all increased since Monday.  And, his neutrophil count was also up!  Which means he's no longer extremely neutropenic (he's now considered "moderately" neutropenic).  Yay!

Still, our team decided to go ahead with the transfusion because he was "symptomatic" yesterday (lethargic, pale, cranky) and because we're headed into a weekend which would mean an ER visit for us if he needed a transfusion in a couple of days.  I appreciated that they wanted to help us avoid an ER visit, if at all possible.  And, since we had our follow up appointment scheduled today anyway, it wasn't like this was an extra trip - it was just an extra long day.

After checking his vitals and doing an exam - they hooked him up and the long 3 hour wait for his transfusion began.  Callum watched TV while I spent the ENTIRE time at his beck and call - since he was hungry and cranky and pissy that the cafeteria wasn't delivering food fast enough.  And then, when they finally DID deliver breakfast - it wasn't to his liking.  :)

Other than the bag of blood hanging, all you really see is a red line leading up to his arm. 

Bread!  Bread!  Where's my bread?!  Why did they only give me ONE piece of bread?!? (toast)

Oy.

In between this song and dance, I was giving him his morning meds and discussing his lab work and general progress with the nurses.  I don't think I sat for more than five minutes the entire visit!

Thankfully, Callum's mood improved the longer we were in the room (I'm sure his body getting replenished with good fresh blood was helping!) - to the point that once the transfusion was done, he told me he didn't want to go home, but stay there (and finish his pizza).  Ha!

We also received good news about an MRD test our doctor had run on some of Callum's peripheral blood from Monday.  This is a test they send up to Seattle to perform, under some extra fancy shmancy magnification to look for leukemia cells, that the naked eye cannot see.  They perform this test at Day 8 (Monday) and again on Day 29 (end of induction).

His results came back negative (0%).  This is GREAT news.  Zero of the micro leukemia cells were found - which means Callum is responding really well to his treatment.  If he has the same results after Day 29 - he'll officially be in remission, and probably move forward with either Standard or maybe even Low Risk protocols.  :)

Support LPCH!

No big blog update today because I need to get to bed for an early morning (7am) appt at the hospital tomorrow.

So instead, I'll leave you with this link to go vote and support Callum's hospital, Lucile Packard.

The top hospitals who win will receive initial funding to start a community program for cancer patients. In LPCH's case, a photography program for kids!! So neat. :)

http://vote.livestrong.org/applicant/86-Lucile%20Packard%20Children's%20Hospital%20Stanford/

Masked Super Heroes

Well, now I'm sick.  Boooo!

It doesn't seem to be too bad, but I felt a sore throat coming on last night, and some coughing.  Which is not really surprising given how little sleep I've had these last couple of weeks.  But, it's also now scary, and it sucks.

But, there is a silver lining!  Because Logan and I now get to team up with masks together.

He was very worried that he could get Callum sick on accident, and that Callum could die as a result.  :(  This has allowed me to show him that we all get sick and we'll all be fine.  Callum will be fine.

Paul was a big help to me today - I was able to sleep in a bit and then rest in the bedroom (keeping my germs away from Callum!) for part of the afternoon.  Toward the end of the afternoon, I was feeling better and back in the main part of the house, so Paul took off for a walk.

We both tried convincing Callum he should go too, so that he could get out and get some exercise (side note: the doctors wonder if some of the shaking he's had and still has, is due to muscle atrophy from being in the hospital so long and not exercising like usual).

But he refused.  He said he did NOT want to go outside.

Not five minutes after Paul was gone, Callum called out to his "Grandpa Ito" for help.  I told him he was out for a walk and would be back in a bit.  At which point Callum's (steroid induced hormonal rage) took over and he had a complete meltdown.  Screaming at me that he WANTED. TO. GO. OUTSIDE. MOM!

Which then followed by complete silence, and I found this.  :)

When Logan got home from school, he went out for a bike ride around the block (or three) with Paul, which he's been doing more often lately (and which I'm SO glad he's doing!).  He seemed to have a really great time.

Callum was on his five hundredth plate of (different) food for dinner. ;-)  When all of a sudden he announced to me that he'd like to go outside.  I said fantastic!  Let's go!  He said No Mom, I want to go on a bike ride.  I said really?!?

And so, we were off.

We made it about half way around the block before his tired little legs tuckered out and he wanted me to carry him - and his bike - home.

But, we made it out of the house.  Progress.

After a morning of chemo, a good dose of Mama's cinnamon toast is in order!

For those of you who've been following via my previously posted schedule (*cough* Dad *cough*), you were probably wondering why our appointment was for today, when the previous schedule I posted showed we were going in on Sunday.

Technically, Sunday WAS our Day 8, and the protocol we're under says Day 8 requires those treatments (outlined in the schedule).  However, the protocol does allow some flexibility, within a day - so we moved out the treatments to Mondays.  Some of the other medications will remain on the same previously scheduled days however.

And, because we were at the out patient center and he was under, we had them do a dressing change and cap change of his line - which means I've now shifted our remaining cap changes on the schedule too.  Just another thing we'll have to get used to - some of our scheduled dates/appointments will move around a little over time.  And that is okay.

So, if you didn't follow all of that, then follow this - an updated schedule.  ;-)

Even though we had to wake up super early this morning for Callum's procedure, we had a really great morning.  Callum was not happy (again) to be back at the hospital, but he tolerated it.  And, thankfully, our anesthesiologist recognized his anxiety and gave him something to calm him down before we went into the procedure room.

I handled it a lot better this time, by not falling apart the minute he knocked out.  But this was the first time for Jon and it was a little harder on him.  :(   I knew what that felt like of course, so it was good that we were together, I think.

His procedure went great!  We waited maybe 15 minutes or so, and then were brought back into recovery to hang out with Callum while he woke up.  During that time, we had a chance to meet "our team" - the assigned oncologist and nurse who we will get to know very well over the next 3-ish years.  They were thoroughly impressed with my charts and schedules (some of the nurses were asking me if I could send them copies - ha!) and our doctor seemed to shrug - you two seem to have it under control!

If only they knew.  ;-)

Overall, they said his numbers looked good (and as expected).  His hemoglobin was down a bit today - he doesn't yet need a transfusion but we're supposed to watch him over the next couple of days and let them know if we think he's becoming too lethargic or pale (signs his counts are dropping and we'd need to come in for another blood transfusion).  His platelets, however, looked great.  And, he is still neutropenic so we should continue to remain ever vigilant about all of our hygiene.

Callum asked me throughout the visit, if I could make him cinnamon toast - I promised him we'd whip some up the minute we got home.  And so, that we did!

He continues to eat pretty consistently throughout the day - it's just amazing the changes, in a moment's notice, that he'll have both in mood and appetite.  We keep reminding ourselves it's just the steroids talking but it's a little crazy to keep up with.  :)

Assuming all continues to go well, we won't be back up until Thursday for our lab work and follow up appointments - we're currently on a twice a week schedule - but if he continues to do great, like our doctor thinks he will, we may knock that down to once a week!  Just amazing!

Fearing the common cold

Well, our unbelievably rotten luck continues.  Logan caught a head cold sometime yesterday and started coughing last night.  Grrrreat!  Just what we need with an immunocompromised kiddo in the house!  :(

So, we had the boys sleep in separate rooms last night and have tried to keep the contact between the two today, at a minimum.  It's super tough though, since the boys so desperately love spending time together (and NEXT to each other, breathing down each others' necks, literally!).

Thankfully, Logan has been absolutely AWESOME at wearing a mask, without any complaints, ALL DAY today (he did get a break when he went to golf practice with Jon and Paul in the morning).

And, he's also doing a great job at washing his hands well (while counting to 60!), which the doctors say is the most important thing to do to help minimize any sort of exposure to viruses.

Meanwhile, Callum has had a pretty decent day today.  He continues to have waves of nausea which we're trying to keep at bay by medicating him proactively and spacing his normal meds out farther apart (and so we don't have the same thing like last night where he throws most of it up and we have to dose him again - not fun for any of us).

When he's not nauseous, he has had a ginormous appetite - basically, our day has been filled with medicating or feeding our little kid.  At one point, he decided he NEEDED a hot dog.  I said we didn't have any and perhaps we could get him one tomorrow.  He said but Daddy can just go to the store and get one!  (and, Jon actually did)

It's like living with a crazy hormonal pregnant woman with random cravings.  :)  The nurses did warn us that the steroids would do this to him, but it's just so bizarre to be in the middle of it all.

We've had a couple folks drop care packages off tonight which has been quite lovely.  Otherwise, we've spent the day running chores, getting mounds of laundry done, installing new furniture in the guest room (for our semi-permanent guests!), and taking care of a few things with our cars.

I also had grand plans to bake a banana bread today but alas, lost track of time.  Perhaps tomorrow I'll get to it.  We'll see.  :)

Callumism of the day

Mommy, I'm not sick. My *blood* is sick!

I guess some of what we have been telling him is sinking in...

Our "new normal"

The doctors and nurses keep referring to our "new normal" which I've started to do too.  Everything will be a new normal for us - and good luck thinking we'll ever have our old normal back.  Sayonara old normal!!  We will miss you!! (seriously, we will.)

Just when I was thinking I might, maybe, just a teensy little bit, have things under control at home - we go and have a lab and follow up appointment with the center in the morning.  And, poor Callum puked before even really getting out of bed.  So, our morning was rushing around getting ready to leave, calming him down, getting him dressed, packing bags (not just some snacks for the long appointment but what if things go wrong and we're there all day for transfusions?  or, heaven forbid, admitted back into the hospital?  these are things we have to consider and be ready for now - so I packed an overnight bag as well), etc.

We finally get out of the house - probably 5 minutes late, and just as I'm about to turn onto the freeway I realize DAMNIT we don't have his mask (which he has to wear at all times while at the hospital - lots of construction as well as other sick kiddos around).  Sooooo, I turn around, run into the house, grab the mask, get back onto the road, and voila! we show up 10 minutes late to our lab appointment.

But, the waiting room is PACKED TO THE GILLS so they were another 10 minutes before seeing us for the lab work, and then another 45 minutes or so before they ushered us in to meet with the nurse and review our lab work.  Ugh.

Meanwhile, poor Callum, was having A. FIT.  He was NOT happy about being back at the hospital (can't say I blame him!), and he was still feeling pretty crappy from the morning throw up, and because of THAT, he hadn't eaten or drank anything all morning and here it was almost noon.  I had plenty of snacks but then Moody McMoodster arose and HELL NO was I getting any snacks into that kid's belly.  So yeah, there was that too.

We finally saw the nurse - everything looked great.  They were super pleased with how he was responding and looking as a Day 6'er.  And his lab work didn't indicate any need for transfusions (yay!).  His platelet count was great, his hemoglobin count was great.  His neutrophils are way down - so he's definitely still neutropenic (which is expected, it just means we have to be hyper vigilant about protecting him as much as we possibly can, from any viruses floating around).  We talked a bit about his nausea and how to combat that (I am more than welcome to medicate him more proactively, so we're going to try that tonight, more on that later).  Two and a half hours later, we were finally on the road back home.

Callum then really perked up for the afternoon - he was SO HAPPY to be back home and away from the icky hospital, and he was hungry too (imagine that), so he ate a big healthy lunch.  Somewhere in there I also took care of his PICC line flush and cap change (eeks!) - Jon provided moral support (and teasing) while we took care of that.  Nerve wracking!

We also got a call from one of the center's nurses to talk through and prep for Monday's procedure.  Lucky us, they had a few cancellations, so our leisurely 9:10am appointment was bumped up to the first slot.  We now have to ARRIVE at 7:15am (it's a 30 minute drive).  What a major bummer!  :(

I was trying to figure out where the heck our day went, when I remembered most of it was consumed by the damn trip up to and back from the hospital.  It really throws a wrench in your day!  So, the afternoon slipped by….

We had a couple of stressful events this evening - first, I had noticed Callum was shaking, but didn't feel feverish.  I had remembered reading something about shakes in my (bigass) binder so I went to look it up.  Sure enough, they want you to call anytime he has shakes or chills, with or WITHOUT fever.  Damnit.

So, Jon spent time on the phone with the on-call doctor talking it out and we agreed to cover him with a blanket (in case he was just cold vs. feverish) and watch him for 30 minutes.  If the shakes went away, he was probably just cold, but if they remained, it could be the start of a fever (very bad for us, we'd have to rush to the nearest ER).  So, I sat with him covered in a blanket for 30 minutes holding him and watching for any more shakes.  Nothing (and no fever) - so we called the dr back.  He said to just watch him for the rest of the night, take his temp again before bed and again in the middle of the night, and see how it goes.  GAH!

We finished his evening meds and he seemed content so I left him on the couch to go have dinner.  He came up to the table, complaining of his neck hurting (which he generally says when he's feeling nauseous or about to throw up - I can only assume it's some sort of acid reflux, he's done that before this treatment as well), so I sat him on my lap and rubbed his back to talk to him.  Seconds later, he had puked all over the plate in front of me.  Awesome.

So, since we had just given him meds not too long before, back on the phone we went (it was my turn this time) and talked to the on-call doctor again.  Since it was very close to the window where he'd say to re-dose, and because both Zane and I - while not paying close attention to the puke - remembered it being a brownish-pink color (and his meds are reddish pink because I mix them with raspberry syrup), the doctor and I decided to give him another dose of his Dex.  We discussed the risks of another dose vs. not getting his dose - and not getting his dose was much much worse, since this med (the steroids) is very important alongside the chemo.

But, this time, he wanted me to give him some anti-nausea meds (Zofran) first, wait 30 minutes, then give him his second dose of Dex.  Which I've now done.  And feel like I'm on pins and needles anytime Callum coughs or acts like he's going to heave.

And I'm exhausted.  And I didn't get jack done today.  But hey, whatever.  It's our new normal.

Nausea

Well, the nausea continues. :( and unfortunately this morning Callum threw up a bit once he woke up, poor guy. Here he is, getting a bit of love from his older brother while they watch TV. :)

Now THAT'S a medicine cabinet!

We might even be able to say we're stocking a small pharmacy in our house now.  ;-)

Paul spent most of the day shopping for, and then assembling, a medicine cabinet in our laundry room so I wouldn't go crazy with all of the medical supplies mounting on our dining table and kitchen counter top.  It's crazy how much we are stocked with, and this is only a couple of weeks' worth of supplies and meds!!  :(

Today has been fantastic. It's surreal to be home.  We've taken care of a lot of random errands we've been putting off (like paying bills, filing taxes and signing Logan up for summer camp!).  I've also been in crazy organizer mode - as much as I can between the little squeals from our little one.

Overall, Callum is in amazing spirits.  It's SO COOL to see a little of his old self back.  He had some trouble in the morning - I finally pinned it down to nausea, so I gave him some anti-nausea medication and the rest of the day he's been lovely.  He's eating and drinking well, playing, talking, and wanting to help around the house.  :)

Logan is in MUCH better spirits as well. He's happy that we're a complete family again and he's extra happy to have his pal Callum around.  The first thing he asked when he walked in the door after school today was, "Is Callum here?".  The two of them have been like peas in a pod, playing and talking and laughing together most of the evening.

I'm gearing up to administer Callum's evening meds - which he (and I) hates.  But he didn't nap today so I suspect he'll go to bed reasonably early tonight and I still need to get them in him.

Tomorrow morning is our follow up appointment and more lab work.  'Tis our new life....

Flushing at home

About to start my first Heparin flush of Callum's PICC line at home! Phew!

Side note, check out my awesome binder from the hospital, but now much better organized and highlighted. Thank you Kim for all the fantastic office supplies to help my sanity!!!! :)

Fast friends

Big bro is happy to have his little bro home. Little bro is happy to be playing with his big bro again.

Happy

Playing games while Mom and Dad pack up the car. Looking pretty happy! (Perhaps because he's finally not attached to a machine!)

Discharged!

We got the all clear and are packing up!! I can't quite believe it.

Callum had his Day 4 chemotherapy today and did very well, without any reactions or issues. His lab work from the early morning (4am) plus his lab work from this afternoon (4pm) all looked terrific!! :)

We've spent most of today meeting with the nurses to continue our training on home care, our social worker, our case worker, and of course our doctors. This is a pic of Jon flushing Callum's PICC line (I also got to practice flushing his line as well). We come back on Friday for a follow up and more lab work.

The strange red and white thing on his face is one of those instant heat packs. It turns out Callum's sore "cheeks" wasn't due to mucositis after all. His doctors think he's experiencing jaw bone aches and pains - a common side effect to the vincristine (which he had on Monday). This helps explain why all he wanted me to do was compress his cheeks for him (which seemed bizarre to me if he had sores inside his mouth but makes more sense if it's aching and the pressure helps).

His pain had continued to escalate through the night and this morning - so in addition to several bags full of meds and equipment we were already going home with, we now also have some stronger than Tylenol pain medication that we can give him for things like this (that unfortunately, will crop up as we go along).

We gave him the good news a few minutes ago, when he woke from his nap. He immediately bounced into a good mood and is excited to go home (after confirming it would be with us) and see his big brother. :)

Planning

Every project manager knows there's a number of different phases we need to cycle through to lead a project to a successful finish.  One of the things I've learned over the years - is that careful planning and organization up front can make quite a bit of difference - especially when you are in the thick of things.

For me personally, some amount of planning (large or small) also helps keep me sane.

Over the last day or so, it has become more and more clear that Callum's doctors have been very pleased with his progress so far, and are extremely optimistic about sending him home as soon as possible.

Yesterday they were discussing sending us home on Day 5, Thursday.  Today, however, they threw us a "curve" ball and said well if all goes well with his chemo tomorrow, we think he can go home tomorrow.

WHAT!?!?

Insane!

But so awesome and cool!

But so scary and insane!

And - OH SHIT, are we ready for this???

So today has been a little bit more focused on the planning and prepping and as much as possible, organization of this "project" (for lack of a better term).  My dear friend Amanda has graciously volunteered to begin consolidating a "master" distribution email list of friends and family who'd like to be kept up to date on everything that's going on with Callum, and to enlist help from folks, when needed.  Since not everyone (e.g. our coworkers) reads this blog, nor needs the enormous amount of detail that I like to document here (for you, sure, but mainly for me), she has been taking the important nuggets from my posts and then consolidating them into a high level summary to send out to the list.  By the way, if you are interested in joining the list, please email me and we'll get you added.

She (and I) have also received a number of fantastic ideas from our friends and family on ways to help support us through the long journey ahead (thank you!).  I've happily volunteered a few of my closest pals to help her in that cause and see how we can delegate out various tasks or errands to take care of.  It's not very normal for me to accept (let alone ask) for help - but I've definitely come to realize that this time is quite different from any other, and we'll need any and all help we can get.  :)

The hospital has started doing their own "prepping" of sorts - Jon and I have spent a lot of time today with a number of the nurses - going through a checklist of "trainings" that we need to understand before walking out the doors.  I got my first "mini" lesson tonight on how to clean and change the caps of Callum's PICC line, and flush it out - something which we'll need to do regularly once we're home.  We'll get our "official" lesson with a PICC team nurse tomorrow.  But in the meantime, our night nurse gave me a few caps and syringes with saline to practice the "feel" of connecting them together.

And then there's my own planning.  Right now, Paul is staying with us at the house to help out - mostly - with Logan, while Jon and I have been back and forth to the hospital.  But, once Callum and I are home, I know he'll be helping us out in other ways with Callum too.  The three of us (me, Jon and Paul) plus my parents, most likely, will all need to keep in sync on when we gave Callum his last set of meds, any notes we need to keep track of on his eating habits or temperament, etc.

This will mostly be to keep us all straight because inevitably, I think, someone will forget something.  But, I figure it'll also help to have the log handy whenever we attend our bazillion follow up appointments, or (I hate to think about it but I know it'll happen to us eventually) a trip to the ER.

I'm still tweaking them but after today's news of potentially going home tomorrow, I thought I better get at least a straw man together stat!

Callum has been doing great - Jon spent most of the day with us at the hospital and we even got out and walked around a bit (he loved visiting the hospital's train set).  The doctors pulled him off his low-phosphorus diet, to see how his numbers look tonight, and they've also pulled back on his fluids.  All in an attempt to prep him for going home.

The only issue, which cropped up around lunchtime and has gotten worse (more painful for Callum) throughout the afternoon and evening, are these little sores in his mouth (inner cheeks).  It's a side effect of chemotherapy, called mucositis, and can be super painful.  He's been having trouble eating and just cries out in pain while laying in bed, which has been pretty hard to bear.  :(

We gave him some Tylenol tonight and I'm just waiting now to do another dose, to hopefully take the edge off and allow him to sleep through the night.  We'll see how it goes, poor little guy….

Sleep is overrated

I get these "Health Tips" newsletters from one of my dermatologists every now and again.

Today's headline reads: Are you getting the rest you really need?

With bloodshot eyes, a stiff back and a cup brimming with coffee next to me, I can confidently say no, no I am not. ;-)

Nice timing. Right?!? :)

Sadly, Callum is having more restless nights as we carry on, but for different reasons. He's no longer waking up to the vital checks every 4 hours or blood draws or alarms beeping next to his bedside. Instead, he's becoming a more violent sleeper, suffering from a few bad dreams, where I wake up to him kicking a lot and half yelling. :(

After a bit of thrashing he'd then wake up (or I would wake him up - often times he needed to pee anyway) and tell me "his bed is very dangerous" but I couldn't get any more out of him.

Until one of our potty breaks, he remembered part of his dream.

My bed is very dangerous Mommy.

How come Buddy? Did you have a bad dream?

Yes. You left to drive home in your car Mama. And then the doctors came and poked me in my bed.

I reassured him we weren't having any more doctors poking him and I was there with him. But man this stuff just breaks my heart. :(

Plan of Attack

I've gotta keep this short and sweet since it's late, but I've been working on outlining the "plan of attack" (as I like to refer to it, otherwise known by the doctors as our "roadmap" or "protocol" we will be following).  This only applies to the first phase of our treatment - called induction, which lasts approximately one month (29 days).  There are many further phases after induction, but we don't know what those plans look like exactly yet, since a lot will depend on how Callum handles this first, most intensive phase.

The goal, at the end of induction, is that all leukemia is gone and Callum is in remission.  It doesn't mean we stop chemotherapy by any means, but this first month is critical in trying to kill any and every bad cell in his body (sadly, good soldiers will also fall as a consequence, we can get to that later).  It's an extremely intensive first month but the hope is that we hit hard and don't let up.

I've always been a pretty visual person - so I decided to lay out the plan in a "prettier" format.  ;-)  You can see poor Callum is being subjected to a number of different drugs - most several times a day, every day, for the first month.

He absolutely HATES most of the medicine he has to take (by mouth, he doesn't notice anything given by IV or lumbar of course), so it's been a painful drawn out battle each time the nurse comes in with a new set of syringes for me to work on.  But, I am slowly learning little tricks here and there on how to make the time go by quicker and to sneak the meds in while he's distracted and not paying as much attention to the awful bitter tasting crap (yes, I've tasted most of them myself, to see).

The first five meds listed in the chart above are a part of his particular protocol.  However, there are several others, those four listed at the bottom, which are given "proactively" to basically combat the side effects associated with the chemotherapy drugs.

In addition, he has also been on a low-phosphorus diet for the last couple of days, since the chemo will spike up his phosphorus and his labs were showing he had somewhat elevated levels of phosphorus already in his system.  Luckily, the diet seemed to be all that was needed, and today his levels were down to normal/lower ranges which made the doctors happy.  If that trend continues, we should be able to get back to a normal diet soon (which will be nice!  one less thing to worry about)

The team of doctors and nurses watching over Callum are very pleased with how he is doing so far.  In fact, a bit of good news received today was that he may be discharged as early as Thursday! (Day 5)  While exciting, I have to admit, it's also very scary to leave the "safety" of the hospital and tackle this "on our own".  We of course, won't be on our own - and in reality, we'll be driving back up to the hospital every other day, if not daily, for checkups and appointments and blood draws.  But still, it makes me a tad nervous.

Those nerves don't outweigh the relief and sanity I think we'll feel by finally being back home though.  So don't get me wrong - we are very much looking forward to checking out and getting back into a somewhat regular rhythm again (as "regular" as we possibly can manage).  :)   Anyway, our discharge will depend a lot on how he continues to do these next few days (the big KEY issue that they continually talk about is not getting sick, and not getting a fever, since we're basically killing off both bad AND GOOD cells - so he has nothing left to fight, even the common cold).  It'll also depend on how his next chemo dose on Day 4 (Wednesday) will go.  They'll obviously monitor him actively after they begin the treatment, but they'll also watch him closely overnight.  If all is well - then to home we go!  We aren't counting on it - since we don't want to get our hopes up too high, but wouldn't that be nice.  :)

Callumism of the night

Callum woke about 2am to go potty. Afterward he asked me if he could sleep in my bed. I said ok - how come?

"That bed [his hospital bed] gives me bad dreams."

*sigh*

Day 1

It's been three days since we were run over by a semi-truck with Callum's devastating news.  However, we're hanging in there and doing okay.  Our focus right now is getting through each day, day by day.  Soon, I know, we will need to plan our lives for something more long term.  But right now, we're just able to keep our heads above water.

Both Jon and I have waves of tremendous emotional sadness that come and go without warning.  We've also spent most of our time "waiting" about the "what's next" of our lives.  We did finally have that talk yesterday, so I'm starting to feel a bit more "normal" (as normal as I guess one can feel in a time like this), knowing we now have a plan in place.

After Thursday's shocking news and the whirlwind of activity to admit us into the hospital and get us situated, the big focus was Friday's number of procedures.  So, Thursday night was actually quite disruptive.  We ended up having to do TWO more blood draws (roughly 1am and 2am), and then we did a platelet transfusion around 3am, to prep him for Friday morning's procedures.  During the transfusion, they have to monitor him very closely to check if he has any adverse reactions, so they're in every 15 minutes examining him for hives, checking his breathing and heart rate, etc.  Amazingly, he slept through most of it - but it was exhausting for me.

Once the sun rose, it was time to prep him for the procedure - which meant wiping him down with these special cleaning wipes to keep his body sterile.  It was early, the wipes were cold, and he hated every minute of it.  Of course, he pretty much hates every minute of anything the hospital staff need to do with him.  :(

We were transported to the outpatient center where the procedures are done - I talked with a nurse and his anesthesiologist while they prepped.  They (and everyone at the hospital really) were fantastic in answering any questions I had and briefing me on what would happen in the procedure room and what to expect afterward, etc.  I stayed by his side up until he was put under with a general, and did a pretty good job holding it together.

But, the minute I walked out with the nurse, I started to tremble.  She just stopped us right in the middle of the hallway and gave me the biggest, tightest, longest hug ever - holding me there while I just sobbed into her shoulder.

The procedure would take between 1-2 hours, so she encouraged me to go down too the cafeteria and get some breakfast or go outside and take a walk.  I went to our room first but immediately knew I couldn't stay there, so I headed down to the cafeteria and sat in the courtyard outside trying to distract myself reading silly Facebook posts, but breaking down every few minutes with tears streaming down my cheeks.  My phone started to die about an hour and a half later so I headed back to my room to twiddle my thumbs waiting for the call.

At the 2 hour mark I was wondering where my damn call was.  :)  So I walked over to the outpatient center (everything is all very close by) and ran into a couple of hospital staff I recognized - they helped me find the nurse overseeing Callum's procedure, who let me know they had JUST finished and were bandaging him up, and said he did great.  She wanted to check his vitals etc. first before moving him to recovery and calling me - so I went back to our room to wait another few minutes before she called.

When I got to the room he was still totally knocked out - and we probably waited another 45 minutes before he finally came to.  He was in a fantastic mood (thank goodness!) - super talkative, tho still a bit drugged out.  He had remembered the anesthesiologist had promised him an orange popsicle and asked "Where's my popsicle?" when he came to - so the nurse immediately ran to grab him one and he quickly started chomping on it.  Before we left to head back to our room he asked if he could have another, for his brother, which of course all the nurses loved.  ;-)

The procedure itself took awhile because they were doing quite a bit of stuff.  They successfully obtained a bone marrow aspiration (no biopsy - which I thought was good news - less painful) and conducted the spinal tap, where they also administered his very first dose of chemotherapy.  They also put in a PICC line, but had a minor complication with it and had to pull it out and rethread it back in, via X-rays to confirm placement, which is why it took so long.  Thankfully, they also took out his peripheral IV, so that we wouldn't have to worry about removing it later.  Just before we left, they did a quick blood draw from his PICC and he hardly noticed (just wanted to know where his old IV was) - talk about fantastic!!  I was so grateful.

Once back in the room, he and Logan just hung out together watching movies and eating their popsicles.  We had several visitors throughout the afternoon - some volunteers from the hospital library stopped by to play games with the boys, the PICC team lead came by to talk to me about his PICC line and how the procedure went (and to give him a stuffed animal!!), we also had several gift packages from friends and family (thank you everyone!) dropped off, and my brother Zane, and later my parents, all stopped by.

Toward the end of the afternoon and into the evening I noticed Callum's temperament changing for the worse.  He would get really bitchy, really quickly.  He'd be playing on his bed and happy go lucky one minute and without any warning at all, he'd turn into a vicious little crabby monster.  The nurses nodded - saying this was fairly common after a big day, and with the general wearing off, etc.  But that we should be prepared for the mood swings to get worse, once he actually starts treatment.

Grrrrrreat.  :(

Still, I thought about it some more later and decided we probably had way too much activity for such a big day, and I'd need to monitor it more closely and even limit his visits when he has big days like that. It was just too much for him to take.

Friday night was much better for both of us.  They did another blood draw (they were checking his blood every 12 hours once we checked in, now we are on an 8 hour cycle!) and decided to give him a blood transfusion sometime in the middle of the night (our doctor had warned us that this would be expected and very likely, given his hemoglobin has been so low - and when it hits a certain number they just give him more blood).  I think what this also means for us is that since he's not producing any new blood and the chemo will be killing all bad *and* good cells, it'll mean more transfusions later on, until his body is able to catch up to produce on its own.

So, all that went well but again, because it was a transfusion, the nurses had to come in every 15 minutes for an hour, to keep checking on him.  I slept through some of it, but by 4am, poor Callum had to pee - so I helped him with that and then we both conked out until 8am.  Phew!

Yesterday was a pretty good day - we spent a lot of time just lounging in the room, waiting for our 2pm appointment with our doctors.  Our team of doctors had stopped by the night before to discuss that his bone marrow results were in - so we had a definitive confirmation of leukemia (bummer), but what it also told us was the sub-strain that he has, which will tell us what type of protocol to follow for his chemotherapy.  So he is now officially diagnosed with SR B-ALL (Standard Risk B Acute Lymphoblastic Leukemia).  It appears this is "good" news (if you are going to have cancer, this is the one you would want), since this sub strain is very common and highly curable.  Curability rates land around 95-96%.  Also, they did not find any leukemia in his spinal fluid, another great sign - since it hasn't progressed as far within his body and hopefully, means "easier" treatments to deal with.

My parents stopped by a bit before 2pm to watch the boys - they took them around the hospital which was great because it was the first time Callum had left his room (I checked with the doctors the night before on whether he was in isolation or not here, and he is not!  So as long as he's wearing a mask outside of his room, he's allowed anywhere within the hospital!  They encourage us to walk him around - for his mental health and to also get some exercise and help his bowels move).

I had read a binder-ful of paperwork prior to our 2pm meeting so most of the meeting was pretty straight forward for me and made a lot of sense.  Jon and I asked a fair amount of questions, as we always do, but the whole experience made me a bit calmer than every before.  We walked through the protocol we'd be following for Callum - what to expect in terms of which meds he'd be taking, how long, how often and which days (and what the side effects to each would be).  Me, being the planner, I really appreciated the visual of connecting what was happening each and every day for my little guy.  And yes, I've already built a spreadsheet or three, in my head, to help me manage and keep track of his daily treatments moving forward.  ;-)

Sometime later in the afternoon we decided to try and get Callum to nap (given his crankiness hasn't let up) - and I took advantage of some of the downtime to rest as well, before Jon and Logan had to leave again to pick up Paul (who was flying in that evening).

At roughly 7pm, I woke Callum up from his nap since we had to get some more X-rays done of his chest - this was one of the precursors to his treatment - to ensure his PICC line was still properly in place before they start administering the chemo.  He hated it (you'll notice a theme here).  Once we were done with the X-rays, I then gave him a bath - mostly because the doctors wanted the bandages from his back off - but the adhesive was stuck on so well that the nurses suggested soaking him in water first would help.  We played and he enjoyed his bath, for a good 30 minutes, until I started tugging here and there to check his bandages, and then he got royally pissed.

Sadly, the 30 minute soak wasn't enough.  But he was already out of the bath by then, so our nurse gave me some adhesive remover, in spray form - which of course was cold the minute I sprayed it.  :(  Pulling as gently as I could, but firmly so I wasn't taking forever, I removed his bandages, all while he was screaming bloody murder into his pillow and saturating it with tears. :(  After I removed his bandage I noticed his main puncture site hadn't quite closed up - so in addition to the pain of ripping a bandage off his skin, I was probably also pulling at the (very sore) puncture site too!  UGH.

I immediately got some Tylenol in him and when he asked to sleep with me in my bed last night I didn't argue at all.  I later moved him to his bed about midnight and didn't wake until about 5:30am.  Not sure why or what woke me (I suspect he made a noise) but I got up to check him and unfortunately, his bed was wet.  :(   I guess it was bound to happen given all the fluids they've been pumping in him!

He hadn't woken from it himself so I decided to wait and see - but by 6am he did wake up and was super upset about the accident.  I quickly changed him and laid him back down in my bed to sleep next to me since I could tell he was still super tired (and the nurse was still changing his bed anyway).  Amazingly, he slept until 9:30am this morning!!  He really did need it.

Given our protocol's schedule, our doctors decided that today (Sunday the 16th) would be Day 1 to start his chemotherapy (he technically received a dose during his lumbar, but they don't count that as part of the Day 1 and forward days).  

We've had several medications that we've needed to do either twice or thrice in the day - all of which is agony since he hates the taste of every single one, and he's just tired in general, of medications.  :(  This evening, he begged me (and when that didn't work, he tried talking to our nurse to see if she'd budge) to "give the bad ones back to the doctor" (referring to the nasty tasting meds he had to take).  These are meds we need to give him every day for the next month.  It's going to be rough.

When Jon, Paul and Logan arrived - we all headed down to the cafeteria for lunch.  He seemed really excited to get out and "eat together as a family".  After lunch, I left with Paul and Logan to head home for a bit - I had previously scheduled a massage today, and hadn't canceled it, but we thought it would do me some good given all the hospital couch sleeping I've been doing lately!  It felt a bit weird to be heading to a pampered massage while my poor kiddo is in the hospital - so it wasn't as relaxing as they normally are, but I'm glad I got out at least (it was the first time I'd left the hospital since we had been admitted Thursday!).

I showered at home and just piddled around getting a few things done at the house and spending time with Logan and Paul.  While I was gone, they started the vincristine, his first dose of chemotherapy (via IV).  No issues, it appears to have gone just fine.

After I ate dinner with Paul and Logan, I headed back up to the hospital to relieve Jon.  We three spent a little time together, walking a bit around the floor before Jon headed back home.  The hospital is about a 30 minute drive - so not nearly as close as last week when we were at Good Sam, but it's hard to complain about the distance when there are some families here who have traveled across State lines to receive the fantastic care we are getting here.  I know we're receiving some of the best care in the world, for Callum's illness specifically, which DOES help make this entire ordeal a little easier for us to digest.  

We're still very overwhelmed by everything, and it's hard for us to even talk about, or plan, what our lives will look like these next few months, and years.  I'm sure it'll get better as the days float by, but it's hard to imagine that right now.

It's practically my birthday

So I figure I'm allowed 1. Or 5...

Thanks Jenn and fam for the fantastic treats. :)

Really crappy shitty bad luck

I don't have much energy to post tonight. So, I'll post a few pics I took today - the first one of Callum enjoying his new coloring books which came in a care package from the Cables. He was so happy this morning and loved his new stuff.

Unfortunately the rest of our day just knocked us on our ass.

During our hematologist consult, the doctors determined - and diagnosed - Callum with Acute Lymphoblastic Leukemia (ALL) of childhood.

We were immediately admitted to the hospital (Lucile Packard Children's Hospital at Stanford). The second pic is of Callum being his usual dorky self while they tried to get his weight and height. :)

And the third pic is of him proudly showing off his new room which he, thankfully, loves.

It has all been extremely overwhelming and upsetting to say the least. Jon and I are hit at the craziest times with waves of immense sorrow and fear. And we just don't know what to say really.

But that we've been hit with really crappy shitty bad luck.

Our afternoon has been busy with meeting an army of doctors and nurses, social workers, a(nother) traumatic IV to put in, a(nother) X-ray, stacks of consent forms to read and sign, and prep for tomorrow.

Tomorrow he will go under for a bone marrow aspiration and biopsy, a spinal tap and some initial chemotherapy treatment. They will also insert a picc line (basically a catheter, which will act like a more "permanent" IV to allow blood draws from, amongst other things, so that we don't have to continually poke him).

Best case we'll be in the hospital for another week. But we could be here for several weeks. It'll all depend on how he responds to the initial chemo treatments, and whether he gets another fever/infection, which we would need to be very careful about and care for closely.

Thanks for everyone's love and support. I haven't had the composure to call or talk or email or text at all. I'm still in shock - and a bit of denial quite frankly. I'll do my best to respond as I'm able.