Peace out "Hotel El Camino"!

See ya again in 3 weeks!

What's that noise?

Mama, it's a "heart"! :)

The kid who pees a lot

I'm running out of room. ;-)

Evening visit

My dad brought Logan over for a visit this evening and the boys had such a nice time together. My dad just gave Logan this map where they are collecting quarters from each state. Logan brought it with them tonight to show Callum which was fun.

Then the two tore off running down the hallway, with Callum leading the way to the arts and crafts room on the other end of the floor (I was running as fast as I could behind, with his IV pole, telling them to slow down before Callum's line ripped out of his chest - jeez!!). It was so nice to have them together, even if for just a couple of hours. :)

Hanging out

Each one of these admissions is mostly just a lot of waiting on my and Callum's part.

The methotrexate (chemo) is given over a 24 hour period (we'll be done about 3:30pm this afternoon), and then a ton of fluids over the next day or two to flush it out right after. They'll start drawing labs at regular intervals to test the methotrexate levels in his system. Once it is flushed out and at a low enough level, we'll be discharged. They actively watch the base and acidity levels of his urine too, since this particular chemo is really tough on the kidneys.

So far, we've spent the day watching TV, playing games on the iPad, making more silly faces with the sticker sets Kim got him (thanks Kim!), and taking a walk around the floor to explore, where we found an arts and crafts playroom and puzzles to work on (with another older patient who was super nice to little Callum).

Some major pump action going on!

That's 5 of the 8 available hooks being used! We've got a lot going on over here.

Hotel El Camino

Checking out our view. He says it's like we're in a hotel. ;-)

Our first ambulance ride!

Not to worry, this wasn't an emergency. Each time we have an admission, as a part of Consolidation, we'll go to Stanford first for Callum's lumbar puncture where he'll get chemo into his spinal fluid. Then once he's recovered, we head via ambulance, to a nearby hospital in Mountain View, to stay for the week (and receive the rest of his high dose chemo). This is purely logistics related since this hospital is bigger and has more rooms available for non-critical patients like us. :)

The ambulance was pretty fancy, with a movie playing and all. Callum didn't seem too impressed, I think he was a tad nervous about the whole thing. But warmed up once the paramedics put on the movie. ;-)

Now we're settled into our new "home" for the next few days and waiting on lunch and the start of his chemo. So far, so good.

Jump, jump, jump!

This weekend we had TWO birthday parties to go to, for Logan. I took him to the one on Saturday, at a trampoline place, where he took awhile to warm up (he's been a bit more shy and withdrawn these days), but finally got out and had a great time jumping around with his friends. Here I was trying to catch him mid-jump where he was showing off pulling up his feet to his chest during the jump. :)

Marathon Day

Jeez. What another crazy day!

Callum stayed up til midnight last night - I gave him one more snack before we decided to call it a night. He didn't sleep in too late, but he was in a great mood and didn't start asking for food until after a few hours! I was SURE he would be asking to eat breakfast the minute he woke up, but he proved me wrong.

In fact, 10am rolled around, which is when we had to stop any "clear solids" like jello or popsicles - I offered both several times but he refused. He did want juice though. So, I explained that was it, no more food until after we saw his doctors. And he seemed to be ok with that!

He continued to drink apple juice until noon when I then had to cut him off that as well. Amazingly, he didn't ask for any extra after that either! I was seriously in disbelief.

I did a number of things to keep him distracted all morning which helped. We had a couple of screaming tantrums but for the most part, it all worked. So I decided to keep running with my luck at home vs. heading into the hospital early to hang out in the room Carly had booked for us.

Here is Callum showing off the two lumens to his PICC line. Since we knew the doctors would be taking it out today, we wanted a final snapshot. Woo!

Callum planting and then watering our two pots of veggies (Callum's is of tomatoes and Logan's is of carrots) - this was all a part of my various distractions this morning and it seemed to work well!

This one was taken after Callum had woken up in recovery this evening. He gobbled down two bags of his favorite Cheez-Its in a matter of minutes. ;-)

So after a lengthy morning, my Dad and I headed up to the hospital for Callum's surgery. We got there with plenty of time to check in for our 1:40pm appointment. A nurse took us back to take vitals and have us wait in a small exam room. Jon soon joined us about 2:30pm. The nurse reviewed our paperwork and mentioned the anesthesiologist's name assigned to our case - which happened to be the name of the guy we saw on Monday and who Jon, nor I, were really impressed with.

Yesterday when I had met with another anesthesiologist to examine Callum's cough, she had given me the name of a different doctor assigned to our case which I was happy about (especially since Carly later confirmed she was a great doctor to have on our side).

Soooo, I opened my big mouth and told the nurse I had understood we'd have a different doctor - I couldn't remember her name but she was female. I guess that was somehow the magic word because then the nurse somehow assumed the issue I had with the male doctor was because he was male (not true, but I didn't correct her). So she checked with the scheduling team and told them I preferred a female anesthesiologist and suddenly we had one assigned to us - BUT, we would have to wait since they were on another case.

Ok sure fine. What's a little more waiting after all of this time anyway.

Well, it turned out to be a lot more waiting! Our surgery was scheduled for 3:10pm if you'd recall. They didn't usher us back to the pre-op area until about 4pm I think. And THEN, poor Callum wasn't taken back to start his surgery until 5:30pm!!!!

Kinda crazy stupid really.

Amazingly, Callum was A. TROOPER. For reals.

He complained once or twice here and there about being hungry but honestly, who could blame him?!? And when I explained we'd get to eat after seeing the doctors, he accepted it, said ok and went back to playing Plants Vs Zombies on his iPad. I was soooo glad he was soooo good!!!!

Once they took him back to the operating room (he hardly looked up from his iPad as they wheeled him off), Jon, my dad and I, all took off to the cafeteria for a bite to eat. We were also starving! ;-)

Callum's surgeon called me about 7pm - they had just finished up his surgery and everything went great! His port was in and his PICC line was out. No complications (no breathing issues, etc due to his cough). Yay!

It took him awhile to wake up, but by about 8:30pm he was chomping down his snacks and watching a movie. We left shortly after and got home by about 9:30pm. Phew!

Sadly, my day isn't quite over. Because all of this was drawn out so late, it sorta screwed up our evening schedule. Since I have to administer his chemo dose 2 hours after he's eaten dinner, and given how late it was when we got home, but how he still wanted to munch on snacks, I wasn't sure what I'd do. Ugh. So I finally decided to allow him to eat a bit more, till 10pm, and then give his meds at midnight. It's almost time, thank goodness, because I can barely keep my eyes open as I type this.

Meanwhile, Mr. C is giggling away next to me, watching his movie and in a fantastic mood. He's discovered he has a few new marks on his neck and chest that he didn't have before, but otherwise doesn't seem to be too affected by today's marathon of events. I'll give him his meds in just a bit and then we are going to hit the hay! I'm just glad this little milestone is (finally) over!

Back on the board for surgery

Man, today was a crazy stress day.

After Monday's surgery cancellation, Nurse Carly asked me to keep an eye on Callum's cough.  If it improved any, I was to give her a call either Tuesday afternoon or Wednesday morning.  Yesterday, the cough was still there but it was definitely less frequent and by the afternoon it was sounding much better.  So, I left Carly a message to call me this morning.

First thing this morning, she called me and we discussed.  He still had a cough but it was definitely less frequent and less aggressive overall.  But, it was still a cough. :(  She said she'd give surgery a call to see what the schedule was like for the next two days and would call me back.  She called me back, about 8:30am, and let me know that miraculously, they had a cancellation on tomorrow's schedule.  The scheduler still needed to check with the anesthesiologist for approval to put Callum on the list, but once approved, the scheduler would then give me a call with a time and instructions.  Carly asked me to call her back once I had a time booked.  Since, if we WERE booked successfully for tomorrow, she wanted me to bring Callum in for a quick exam today, to make sure she was happy with how his cough and lungs were sounding.

10:30am or so rolled around and I still hadn't heard from the surgery center (this has become par for the course by the way. While the medical team at the hospital have all been fantastic, the schedulers leave something to be desired - which of course, KILLS me, since I'm generally correcting them, during every call I receive!), so I sent Carly an email to let her know.  She called me back around 11am - the schedulers still hadn't heard from the anesthesiologist team and couldn't proceed without their approval.

Boo.

Carly talked to me again about his cough - she was worried about calling us all the way in, to have the surgery center call it off, since the surgery is technically elective and they won't want to take any big chances.  So, she called the anesthesiologist directly to discuss - who, after hearing Callum's case, said to go ahead and call us in, but that she'd like to examine Callum too.  Carly called me back (this time it was about 11:30am) and asked how quickly I could get to the clinic…. I started packing a few snacks and off we went.

At the hospital, Carly met with us first, to examine Callum.  His cough was pretty wet and crappy sounding OF COURSE.  She wanted to set my expectations that they'd probably not go for it, but to see what the doctors said for themselves.  At the same time, she did acknowledge it was better than Monday and was hopeful they'd give us a pass since we'd all like to get rid of the PICC and just move on.  While the port has some drawbacks to it (it can be painful for little Callum anytime they access the line to draw blood or administer drugs), it'll be MUCH better for all of us.

The anesthesiologist came in next, and of course, then Callum wouldn't cough at all!  In fact, we begged him several times (he finally gave a weak little cough so she could hear), but instead he just wanted to play on the exam table, crawling all over me and my back and using me as a jungle gym while I tried to have a serious conversation with the doctor.  After she drilled me with several questions (Has he had a fever? No.  Has he had a runny nose?  No.  Does his cough wake him up or keep him up during the night?  No.), she finally said ok, I'm going to allow him through for surgery.

Instead of being relieved at the news, I got a bit nervous - You will?  How come?  You haven't even heard his cough!  Are you sure?  LOL.  Yeesh.  I'm such a pain.

So she reassured me saying look - he's clearly feeling fine (as he was giggling and laughing up a storm, crawling all over me), and the main things we're concerned about are the cough accompanied with everything else (fever, runny nose, waking up at night) which he doesn't have.  And, I think you should get the port in this week before you start your next round of chemo next week, so I'm going to approve it.

And with that, she picked up her phone, called the scheduling folks and gave them her ok.  They told her they'd place Callum on the schedule tomorrow (with another anesthesiologist), which she then relayed to me.  She said not to worry, she'd speak directly with her colleague, the other anesthesiologist who'd see us tomorrow, to let her know Callum has a cough but that she approved the surgery anyway. Good, because the last thing I wanted was to come in again and have a different doctor cancel on us again.

Other than not really wanting to talk to the anesthesiologist or cough for her, Callum actually behaved really well at the clinic today.  He was super patient and well behaved, and chatty and giggly the entire ride home.  Since he was in such a great mood, I suggested we take a detour before home and head to Costco to pick up a few snacks for the house.  We had a great time out together, outside the house or hospital.  :)

Later in the afternoon, I got a call from the surgery center about our time slot for tomorrow.  The gal said our checkin was for 1:40pm, with a surgery time scheduled for 3:10pm.

I almost lost it.  Wait, did you say 1:40 - in the afternoon?  and 3:10 - as in, the afternoon?

Yes.

Uhhh.  Do you realize my son is 4 years old?

Yes.

And you want him to fast for what is that, like 15 hours?

I'm afraid so.

That's insane.  Maybe you don't realize it, but my son has been on a pretty aggressive steroid schedule and just got off it.  To ask him not to eat between midnight and THREE IN THE AFTERNOON is like asking me to torture my child!

I'm sorry - they prioritize all the cases for each day by age.

So, you're teling me there's AN ENTIRE MORNING of kids younger than age 4, scheduled tomorrow?

I guess so.  (Although I don't think she really knew)

And on and on this conversation went.  Meanwhile, I was getting more and more worked up by the minute.

Is there ANYTHING you can do here?  Who can I talk to about this?

So, she transferred me to another poor fellow who had similar non-helpful answers.  After I beat him up for a bit, I finally told him I was going to need some better guidance to handle this.  So, he transferred me to an actual anesthesiologist.

She was a tad more sympathetic, thank goodness, but she couldn't change the schedule for me, which is what I was really hoping for.  She offered a few ideas that the others hadn't - said we could feed him jello or juice popsicles in the morning until 10am (and clear liquids until noon).  And perhaps consider waking him up about midnight to give him a snack then too.

I explained we have to give him chemo every night on an empty stomach before bedtime, so this fasting business was a lot worse for us, since it was going to be more like 18 hours when calculating the time we give him his chemo at night.  She said we should consult with our Oncologist but hopefully we could still give him something a few hours after that dose (by waking him up).

I hung up pretty dejected, frustrated, and in tears. :(  I'm sure the breakdown had more to do with stress just building up over the last few weeks, rather than the idea of fasting for a long time overnight, but whatever, it definitely was a breaking point for me.

Carly happened to call just as I hung up with the anesthesiologist, so I was still pretty shaky.  After a few minutes she stopped talking and said, "Are you…. Oh my gosh Bree, are you ok?"  I guess she hadn't quite realized I was barely holding it together when she had called and finally noticed the quiver in my voice.  She was surprised, more than anything, since I guess I haven't really cried, or lost it, in front of her before.

At any rate, she did the best thing I could have asked for in the situation - she said hold on, let me check something, and called me back a few minutes later.

She arranged a bed for Callum in the day hospital for tomorrow morning - she said we obviously still couldn't feed him, but we could hook him up to fluids to help take the edge off, and she'd be willing to hang out with him or have other nurses stay with him if I needed a break or needed to grab some lunch or something.  And, if a miracle happened and we got bumped to an earlier surgery time, then we'd already be there and set to go.  And, if we're doing ok at home and don't want to come in that early, then we wouldn't have to.

It was the SWEETEST thing anyone could have done for me at that moment and I was super thankful.  I apologized for losing my composure with her earlier and thanked her for everything.

I don't know if it'll help Callum much, but just knowing we have that option if we need it tomorrow, helped me get a handle on things.

Meanwhile, dinner with Callum was a bit of a flop tonight.  He ate a bit, but then decided about 6:30pm that he wasn't hungry and wanted to go to bed.  ACK!!  After all this back and forth of timing and meds and eating, and he wanted to go to bed EARLY?!?!

So, I just went with it.  (Really, what else can you do?)  I put him to sleep but warned him I'd have to wake him up in a little bit to give him his nighttime medicine. He nodded half asleep and then passed out, poor thing.  I wonder if today was a lot of activity for him too.

At 8:30pm, I woke him out of a dead sleep, to give him his pill.  He was NOT happy with me about that and of course, hated me further as I tried to get him to drink and swish water in his mouth to get it all down (since he's chewing the tablets, half of the meds get stuck in his teeth, which works a bit against us!).  Ugh.

I finally decided he had gotten enough of it down to call it a night and let him snuggle back into bed.  He woke up about 9:30pm and decided to join us in the den for some juice and TV.  :)  This is actually not too bad!!  Since, I can now give him a little snack before he goes back to bed (without having to wake him), and MAYBE, given how late it now is, he'll sleep in a bit later than usual for us tomorrow morning.

A MAMA CAN HOPE!

Enjoying the gorgeous weather!

Consolidation

Yesterday was a long and exhausting day at the hospital, since we had to be there early for his surgery. We went all the way into pre-op, changed Callum into his surgery dressing gown, wiped him down with these special wipes to prep his skin, before the herd of surgeons crowded our area to debate whether we should actually do the surgery or not (and then decided against it, after I asked them to talk to our oncologist and make sure he was okay with canceling - he gave the final approval to delay the surgery - so there we were).

But, because he still had his PICC line in, it then meant we had to get his dressing and cap changes done, and I had thought we also needed to get labs drawn (but I was wrong).  Because all of that wasn't planned, and the clinic is (always) crazy busy, we had to sit for another hour or so waiting for our turn to sneak in.  And because we had to wait for the opening, I couldn't sneak us away for lunch or a bite to eat - which was really unfortunate since Callum was STARVING.  :(   I had a number of snacks in my backpack that I always carry with me, so it helped to tide him over but it really wasn't enough.

When we were finally taken in, we then had some further delays regarding the dressing change, because I questioned the nurse about whether we should also pull his line out a bit (due to last week's debate on whether the line was tickling his heart or not).  I had also discussed this with the head surgeon down in surgery who said the PICC team could address it for us (she agreed with the doctors from last week, after looking at his X-ray and Echo, and didn't think it was needed, but also said it wouldn't hurt anything to pull it out a half centimeter or so, just in case).  Consulting with the PICC team meant a longer wait time, since we needed them to review Callum's case.  

Part of me wished I had kept my big fat mouth shut since the consultation would further delay a visit to the cafeteria for poor Callum, but the other part of me knew I had to ask - because if I hadn't, I would still be wondering if it was something we should have done.  ;-)

Finally, after reviewing his case, the team decided against messing with the line.  So, we proceeded with the dressing change - which was again traumatic, and tough for both of us, as always.  :(

After that, we then met with (our regular/assigned) Nurse Carly to go over the next phase of treatment, answer any questions I might have, discuss his next set of meds, and allow her time to examine Callum (and question me regarding the cough, etc.).  When we finally left, we THEN headed to the pharmacy to pick up his next set of meds, and FINALLY, at about 1:30pm, we made it to the cafeteria.

JEEZ.

Callum was craving a hot dog - so we went straight to the grill and ordered him one.  He was pretty cranky and hungry (can you blame him?!) and impatient while the poor cook grilled his food.  When it was done and he handed us our food, Callum saw his hot dog, sliced down the middle, and just lost it.

I mean, full on melt down; despair and heart break and all.  He just let it rip.  Sobbing in the middle of that damn hospital cafeteria.  :(  

So, there I was.  With a tray full of just cooked food, a bursting backpack tipping me over, and a sobbing kid who demanded to be carried, while insisting the hot dog on our tray wasn't his because it was cut and he didn't want his cut.

I fumbled to pay for our food - sat us down - and spent the next 15 minutes trying to calm my poor mask wearing kid down.  ALL EYES WERE ON US.  (yet not one damn person offered a hand, btw!! Grrr)  He was just flat out exhausted, and hungry, and honestly we should've just gone straight home but he was so damn hungry I thought getting food in him first before the long drive home would've been better.  UGH.

I somehow managed to "fix" our predicament - basically by insisting he take a couple of bites, and once he did and his hunger took over, he forgot about how upset he was and proceeded to inhale his entire (big ass) hot dog.  

Here's a pic of him in a much better mood, calmed down and finishing up his last bites before we headed home.  As you can probably imagine, he passed out immediately once we got into the car - so I hit a Starbucks drive thru and got gas to prolong his nap a bit more before finally getting home...

Yesterday was also our first day of the next phase of treatment, called Consolidation.  It's much longer than Induction was, but less intense (supposedly).  Here's the schedule I've put together - for those interested :)  We'll wrap up Consolidation by the end of August.  After Consolidation ends, we'll enter the Maintenance phase - which will last until September 13, 2016 - our magical end date (at least for now)!!  :)

 

The thing about Consolidation, from what I can tell, is that it's all about timing.  We know we'll have (at least) 6 hospital admissions to tackle.  These are the sections where Callum will receive Methotrexate via *both* IT (a lumbar puncture) and IV.  The IV will be administered over a 24 hour period, and then we'll have another chemo drug, Leucovorin, to provide at very specific hour intervals after the IV begins, over a few days.  

Because of this, we'll have to stay at the hospital for ~3-4 days after we begin the IV.  It's pretty intense and a very high dose of chemo to Callum's system, so we actually don't get approved to go through it, until a couple of days before each scheduled dose, since his blood counts have to be high enough to handle the chemo (if they are too low, we wait until his counts recover and are high enough to take the slug of chemo).  So, while I can "sorta" plan our lives around these admissions, I also sorta can't.  A bit frustrating for the planner in me, but I'm trying to just go with it.  ;-)

The other main part of Consolidation, which we started last night, was his nightly dose of Mercaptopurine (also called 6-MP).  This one is ALSO all about timing - since he has to have it at night, just before bedtime, and on an empty stomach.  Which means, I had to get Callum to eat dinner by a specific timeframe, and explain to him that he wouldn't be getting any more food or snacks or drinks for the rest of the night.  

Try explaining that to any 4 year old on the street!!  It was tough, but I'm hoping we can establish a routine that will help him understand this is his new life (and ours). 

This drug is actually in tablet form (and just to complicate things more, I'm supposed to give him half a tablet 4 days a week, and a full tablet the other 3 days a week - ugh!!), and Callum has never taken pills before, so I wasn't sure how it was going to go last night.  

He's allowed to chew them and when I gave it to him, he immediately chewed it without too much complaint.  He's allowed to take it with water (phew!) but that's all - no juice, nor food, nor anything else for the rest of the night.  Talk about a tad stressful, man.  Thankfully, we have a champ who's actually pretty good natured about most of this stuff and takes it in stride.  :)

Canceled

Well, unfortunately, Callum's surgery today was canceled. He has a pretty crappy wet sounding cough that's developed over the weekend. The surgeons were on the fence about whether to proceed or not, but finally decided it would be less risky to just hold off and wait until his cough clears. So, now we're "on-call" about rescheduling his port surgery.

Meanwhile, he now needs a dressing and cap change for his PICC line since that's staying in. So we're waiting while they figure out how to squeeze us into the schedule. And, because Callum's been fasting since last night, he's absolutely starving. So, I'm letting him chow down on some fishy crackers while we wait (which is awkward since he needs to keep his mask on, so we showed him how to "sneak" them into his mouth under his mask, which is what he's doing here....). :)

Thank God for iPads

Keeping him distracted about his grumbly belly, while we wait to be admitted for surgery.

Pretty much my life

I went to our bedroom to lay down for a bit this afternoon and catch up on my TV shows.

Before long, Grover hopped up on the bed to join me. A few minutes after that, Callum wandered in wanting attention (and finally falling asleep on my arm, you see his back/body to the left here).

A little bit later and Logan comes in bored because Daddy had fallen asleep and he was by himself. So he wanted attention too. And decided to sit on my legs while playing on his iPad.

*sigh*

Such is the life of a Mama.

A late nap means a late bedtime

"Daddy, you keep watching TV. I'm going to your room."

Surprise, surprise, he's not actually SLEEPING. ;-)

Peek-A-Boo!

Fun cutesy nails for tomorrow! :-P

Happy 4th Birthday Callum!

We've had a pretty low keyed day of course, but that didn't stop us from getting out to an early morning movie since we got the all clear from Callum's doctor! Neither boy actually wanted to go out, but had a fantastic time once we were at the theaters, and kept talking about their favorite parts of the movie (Rio 2) after. :)

Callum's actually been a bit out of sorts today. His legs are super sore from the all-day egg hunting marathon we did yesterday, which had been upsetting for him since he can hardly walk on his own. :( I knew we were probably over doing it but he was having so much fun, and it was so nice seeing him run around like a little kid again, that I didn't stop him. Oh well. Hopefully he'll feel a little better tomorrow for Easter. :)

My brother, parents and grandmother all stopped by in the afternoon for cake and presents. He was against eating any cake (even though he requested we get him chocolate cake for his birthday), and was even against opening presents at first, but warmed up after the first one, to open all of them in the end.

We absolutely love you dearly Mr. C! We hope you've had a fantastic day - and an even better rest of the year. :)

Dyeing eggs!

Since the boys were so excited about the egg hunting today, I decided we should get our egg dyeing done too.

As every year, they had a blast and wanted to do many more eggs than I had made (I had boiled 22!). Callum specifically asked if we could dye more eggs tomorrow. :)

Lost and Found

Logan lost something at school again today....

A playhouse and slide!

Tuesday, before all the hospital madness started, Callum and I actually went out to a nearby playground - he had a terrific time on the swings but he had a ton of trouble climbing the stairs to the slide, so much that he had to get on his hands and knees and climb up like a baby. :( He was breathless and really upset once he got to the top - so after one slide down he said he was ready to go home. :( I helped him climb up once more for the other slide but he was totally done.

It was such a bummer that his poor legs have lost the strength to carry him up a few stairs - so I decided to hunt on a Mom Swap and Sell group I'm on, to find a cheap little kid playhouse. I thought if I could find a smaller one that was not too intimidating, he could work on climbing it, still get some sliding in (his absolute favorite part of playgrounds) and perhaps we could slowly build back his strength.

I was fortunate enough to find one and arranged to have Jon pick it up while I was at the hospital. So, when we got home last night, it was out in our front yard waiting for us. And today, we got to try it out! Thankfully, he's able to climb it, hang out inside, and totally loves it!! I'm so glad it's going to work out for us. :)

Egg Hunting!

I brought out all of our Easter stuff this morning because Logan needed a basket for his egg hunt at school today. Callum was *very* interested in all of the eggs and baskets out on the table and begged to hunt for some eggs.

How could I resist?!?

Plus, it turned out to be a fantastic way to get him outside to soak up some sunshine and exercise a bit! (All the squatting up and down to pick up eggs and walk around actually was quite a bit for the little guy, but he's been loving it!!)

His little belly is noticeable smaller today too! (You can't tell from the pic so just trust me on it)

We've been at this for about an hour and a half (after about an hour outside he took the hunt inside).

Of course, now I can't get him to stop long enough to eat lunch! Ha!!

Home once more!

We were discharged earlier today and we are all happy to be home together once more. The minute Logan got home from school, the two of them played together for a good hour, on the floor, like this! Amazing given Callum hasn't really wanted to do a lot of playing or sit on the floor (or get up from the couch unless we force him) throughout the entire Induction phase. So this was super cool to see, for so many reasons. :)

Callum's liver seems to be improving, since his blood work came back better today. His heart rate is still high, but clocking in about 10bpm slower, on average, than yesterday (purely from my observation). The only thing that was a tad scary (for me) was that he seemed to develop a cough overnight. But the doctors took a listen and examined him and decided it wasn't anything too critical - and most of the cough went away after I got some fluids in him in the morning.

The medical team decided he was stable enough to go home. They're pretty sure his elevated heart rate can be contributed to a viral infection that he's probably been fighting. And with those, there's not much to do but watch and wait till it passes - making sure he's getting lots of rest and fluids in the meantime. (The blood cultures aren't all back but so far they're all negative, so the team is pretty sure it's nothing bacteria related but viral instead).

They think the inflamed liver is due to his chemo, and since it's still functioning fine, producing proteins etc, and the numbers improved today from Tuesday, they're feeling better about it. In fact, they feel it may have just been coincidence that we even caught it at all - since it would've gone unnoticed had we not come in for the fever. :)

We also discussed what to do with his PICC line. The team decided it would be best to leave it in (since he's getting his port in on Monday) - but there was some debate amongst the team on this actually. The resident and fellow (remember, this is a teaching hospital), wanted to leave it in and not disrupt anything. The attending thought we should yank it out, since it was just extra hardware in his body that could cause issues. So I asked him why he was allowing the team to keep it in - and he said he didn't feel strongly about it one way or another. The younger doctors felt we'd jinx ourselves with the approach of "pull it out since we don't need any more labs before the port is put in anyway" :) And finally, I think the attending allowed it because we're only talking about a few more days, and he's allowing these guys to learn to make calls on their own.

What all this means, by the way, is they every visit for us will be nerve wracking, since the residents and fellows want to run a million tests to rule out every possible scenario. Meanwhile the attendings, like our own oncologist, are older and a bit jaded - and pat me on the back saying don't worry, this is all due to the meds, he's fine. (This happened by the way, while Callum was screaming during his echocardiogram and I looked at him and said, THEN WHY ARE WE DOING THIS ECHO.... To which he just said yeah, they're just being careful and thorough). LOL!! Anyway, it's good for us to think about next time around, to help keep our own nerves in check sometimes. :)

While Callum's blood counts have improved, they do still want us to be watchful over the weekend since he has surgery on Monday (and none of us want to miss it and reschedule). Sadly, this means I may have to change our plans for the weekend - I was hoping to take him out for a couple of things to celebrate his birthday (on Saturday). They've said we can still do a few things, we just also need to watch how he's doing too and cancel if he's showing more wear and tear. :/

The one thing I've noticed while we were in the hospital, has been a gradual shift in his attitude and appetite. It's very gradual - but he's more and more, in a better mood, with less and less mood swings. Today, I can't tell you how many times I've found him giggling and laughing and generally in a great mood. WHO WAS THIS GUY?! This has been unheard of over the last few weeks - so much so, it feels a little weird to have our giggly guy back!! :)

Likewise, he's not nearly as ravenous about food!!! It's so cool. He's still asking for food, but I've noticed he's eating less when he does eat, and eating less frequently overall. This also started mostly today. And tonight, when we got home, I asked the boys if they'd like a PB&J for dinner - to which Callum said, not now Mommy. I'm not hungry and my tummy is full.

Music to my ears, man.

MUSIC. TO. MY. EARS.

Another night

So we're staying another night. *sigh*

The ultrasound this morning showed an inflamed liver. His blood work confirms this - but the doctors aren't majorly concerned. The steroids will irritate the liver some - and so far Callum's blood work shows the liver is still functioning fine, just a little agitated.

His echocardiogram came back great - his heart looks good and healthy, pumping blood as it should, if not a bit fast (duh). ;-) It *did show the PICC line is sitting a little on the atrium wall, which isn't horrible but could be "tickling" the heart some. The thing is, however, when they've seen this before, the tickle usually causes a more sporadic and irregular heart beat vs a very consistent (but fast) heart rate that Callum is experiencing. So, the doctors aren't convinced the PICC line is causing the tachycardia, but they haven't ruled it out either. Instead, they suspect it's his inflamed liver and possibly an infection (since he came in with a fever) that's causing the tachycardia.

So for now, the game plan is to continue to monitor his heart another night. We'll draw more blood tomorrow to review his liver function. Assuming it'll stay the same or begin improving, they may discharge us tomorrow.

We'll also revisit whether to fix his PICC line or not - there are pros and cons to messing with the line right now. We could pull it out a bit to quit bothering the heart or remove the line completely. Both of those would be traumatic to Callum, since pulling the line out a bit is like getting a dressing change which he hates. Removing it completely means we'd have pokes for any subsequent blood draws we need to do, before his port surgery (which has now been moved to Monday and could always get moved again). And, we're not sure any of this will resolve his tachycardia.

I think the doctors are hoping his liver calms overnight, which then will calm down his heart rate to more "normal" levels and allow us to go home. We'll see.

All of this has been stressful and worrisome, but we DID get some good news today too!

The MRD test on his bone marrow from Day 29/30 came back negative, which means no leukemia blasts were present in his bone marrow (there was also nothing found in his spinal fluid as expected), which means he's now been reclassified as low risk. Woohoo!

We signed consent forms today for the remainder of his treatment plan and we start up with the next phase, called Consolidation, on Monday. The plan we've been assigned was one I was a little more eager about - mostly because when I worked out the schedules for each, this one was roughly 8 months shorter overall (!!).

Neither is a better plan, they both have the same (very high) curability rates. They just use different drugs at different doses and intervals. The one bummer about this plan we're on, is that we'll have 6 hospital admissions (lasting 2-4 nights) during Consolidation. But, at least it's something we can plan around (vs this fun visit we're doing right now).

All in all, everyone is happy with how he's progressing which is nice.

Waiting is such a killer

Thought I'd share a few pics from last night, while we sit and wait for test results today.

The first pic is of Callum holding his chin up very still while the tech took an X-ray of his chest. They wanted to see if his PICC line had moved and was touching the wall of his heart, and irritating it. We all thought this was likely the cause of his tachycardia, but it doesn't seem to be from the X-ray. His chest (and lung capacity, which they also looked at since his belly is so distended) all look good.

The second pic was taken while they were hooking him up to an EKG. He was very interested in all of the stickers and probes attached to the stickers, as well as the squiggly lines it drew on the screen during the test. ;-) Results came back normal on the EKG as well (other than having a rapid heart rate).

The last pic is of us waiting for the doctor to come back with the results last night (since, if it were his PICC line disturbing his heart we would've had to pull the line out a bit to fix it). Kim recently got Callum this pack of stickers and faces to put the stickers on. I happened to grab it on my way out the door yesterday when we left in a hurry for the clinic (due to the fever). Thank goodness!! He absolutely loved the activity and it was a nice quiet break from iPad games or movies that I've seen 10 thousand times. ;-) Thank you Kim!!

The doctor also ran another test on his blood last night, to check his liver performance. And his liver enzymes came back slightly elevated. So, first thing this morning (7am), we headed to radiology and they did a thorough ultrasound exam of his abdomen and specifically, liver. I haven't seen the doctors yet to know what the results are from that test.

His fever has subsided (~99 which they don't consider an issue here), and his heart rate slowed a bit overnight, but was still high (especially for resting/sleeping). I'm not exactly sure what the average was throughout the night, but it seemed to be hovering around 130bpm, at least anytime I was awake and took notice. So, they've also ordered an echocardiogram (basically an ultrasound of his heart), but the techs haven't stopped by to do that yet.

So, for now, we sit and wait...

Overnighter

Callum's fever has gone down slightly but his heart rate continues to stay elevated which is bothering the doctors. So, they're admitting us to monitor him overnight.

Pretty bummed. And nervous. But they warned us being admitted would happen (several times) over the course of his treatment. So I'm just trying to keep that in mind.

We've done an X-ray and EKG. Now just hanging out playing with stickers and waiting for the doctor to stop by and review the results before we go to bed.

Our first fever

Just when I was patting us on the back for getting through induction without spiking a fever or getting admitted to the hospital, Callum hit a fever this afternoon. :(

It wasn't super severe, but it did spike to 101 at one point which is cause for coming in. After talking it through with the clinic nurse, we decided we could skip an ER visit and drive to the clinic instead.

Now that we're here - they're pumping him full of fluids and running a battery of tests. His fever is consistently sitting at about 100 right now (even after some Tylenol) and his heart rate is pretty high (~160), which means it's working harder right now due to the fever.

They've drawn two blood cultures from his two lumens on his PICC line (they draw from both to make sure there's not an infection in one of the lines). They've also drawn another blood sample with an actual poke (still not fun). I can't remember why they do this but let's just chalk it up to them being extra thorough.

The blood work will tell us things like what his counts are, whether he's neutropenic again or not, and whether there's an infection present or not. We also did a urine sample (which will also look for an infection).

And now we just sit and wait. :/

Sayonara Induction!

Normally, Callum is eager to take off his badge (sticker) and hospital wrist bands as soon as we're home.

But today, he wanted to leave his name tag on for awhile. He said he didn't want to take it off because he wants to be a part of our family. :)

Everything went really well today. He had his Day 29/30 bone marrow aspiration, lumbar puncture (where they remove some spinal fluid to check for leukemia), an IT (where they proactively administer chemo to his spinal fluid) and a dressing change of his PICC line. He woke up pretty quick after the procedure, so when I walked into the recovery room the picture I saw was two nurses leaning over my son, listening intently, as he was vividly describing to them (hand gestures and all) the type of cereal we needed to go buy (cinnamon toast crunch), with milk, in a glass bowl, that he'd eat at the big table, once we got home. :)

While sitting in the waiting room, I friended two other moms, one whom I've seen a few times before. She has a 3 year old boy, who also has leukemia, diagnosed in November of last year. They live in Monterey - so now it makes total sense why every time I see them, they've got a huge wagon full of stuff they're carting around, or a suitcase they're rolling around with them (and she's knitting what looks like a King sized blanket). She says they only need to come once a week now, so I guess that's a bit better for her to manage, but dang what a drag!!

The other mom has a daughter, in 3rd grade, who is fighting lymphoma. The girl was very mature and wonderful to talk to. We compared notes about what types of meds Callum likes and doesn't like vs what she likes and doesn't like. She was aghast that he's fine taking Septra without any assistance (with a syrup or something) and was shocked to hear he hates Zantac and needs syrup to get that one down. :) I enjoyed meeting both moms but I really enjoyed listening to this little girl and her perspective on life more than anything.

Dr Lacayo called me at home later in the afternoon with preliminary results from Callum's bone marrow, stating everything looks good. This test is a 1 in 1000 resolution whereas the test they send up to Seattle (MRD) is 1 in 10,000. So, while it looks good (and as he expected) so far, we'll wait for the final results from the MRD to classify us for the next phase. Once we know what we're classified as, we sign another round of consent forms and are assigned the next protocol to follow (the next phase is called Consolidation, and that starts next Monday).

If we're lucky, the classification and paperwork will happen by our follow up on Wednesday. But if the results aren't back by then, Carly will call me to let me know and then we'll take care of paperwork on Friday instead, when we have to come in for Callum's port surgery.

We're nervous yet optimistic.

Other than that, we get to relax a tiny bit this week and get a bit of a bye on meds, before our next round on Monday begins. It's really weird only having a couple of things to give him each day, but we are all enjoying it. ;-)

And the timing couldn't be better! Since Saturday is Callum's birthday, I asked the doctors if we'd be allowed to go out and do a couple of small things to celebrate. Carly cautiously said yes but does reserve the right to pull back later this week if he's not doing well. Totally makes sense so I'm just going with the yes for now. ;-) I think it'll be good for us all to get out and have a little fun before the next round hits us.

Home Sweet Home

I picked up Tobey and Grover from Kim and Nathan's house today since they're heading out of town (we've had Odin with us for the last couple of weeks) - but more importantly, they've been doing us a HUGE favor by watching our three rascals for over a month!!! Amazing. We can't thank them enough since that REALLY helped keep the chaos in our house to a minimum. :)

Both had tons of fun at the Hickson house playing with their two dogs every day. But I think they were also excited to see me and come home. Look at how quickly they just made themselves comfy in their regular spots! ;-)

Tag!

This is the infamous stop sign that Callum and I tag each time we take a walk. He was very proud of making a point to tag it today. :)

Today we started out in the opposite direction, following Logan and Daddy who were on bikes. Going the opposite direction means we don't come up to our stop sign until the end of our walk, which also means I sneakily got him to walk around the block. ;-)

Unfortunately he had a sleepless night last night. He kept waking up several times throughout the night and insisting to me that he wasn't tired. At roughly 2am, I heard him get up, go to the bathroom, and then instead of heading back to bed, I heard him walk toward the living room. I waited a few minutes wondering if he was looking for me, but he didn't whine or moan for me once.

And then I heard him chatting and LAUGHING. I got up, walked toward the other end of the house, where all the lights in the den were on bright, and he was just sitting content on the couch, playing a game on his iPad!

We gave him his nightly dose of Benedryl to try and get him a little sleepy (I had skipped it last night because he had fallen asleep before I could give it to him) and then I cradled him in my arms, in our bed, the rest of the night.

Callum was having a rougher night tonight as well. His belly was just extremely taught and swollen as it tends to get by the end of the day.

So, while rubbing his belly in bed, I said to him:

I'm sorry you're not feeling well Buddy.

That's ok.

I wish I could make you feel better.

But you are. And the doctors are too.

....

Wow. Love this kiddo of ours.

Mommy/Logan Date

Logan had a great time on a sleepover, with his school friend Aidan, Friday night. While together, Aidan introduced Logan to the fun new world of Lego Chima. So, guess what Logan is now obsessed with?! ;-)

I took the opportunity to suggest a date for the two of us today. We went to the mall and picked out a couple of the little China characters for him to collect and grabbed some yummy mall food as a treat. He knows most of my time these days needs to be spent with Callum, but it doesn't mean we can't steal off for some alone time once in awhile ourselves!

Saturday Milestone

Last dose of steroids completed and just tucked a tired little Callum into bed (he rode around the block on his bike with Jon and Logan today - hopefully that'll help him sleep better tonight!). :)

Callum's Morning Cocktail

After today, we'll get a break from three of these!

(We'll eventually have to rotate them back in but I'm going to enjoy the short reprieve as much as possible!)

Earning my stripes

Just a little bit ago, as I was sitting on the couch at Callum's feet, he looked at me and said (with disgust, I might add!) "Go somewhere else. I'm resting."

Jeez. What a jerk.

My Dad said I'm certainly earning my stripes as a Mom.

Totally!!

Anyway, we got past that bit of moodiness and amazingly, I talked Callum into joining me for a short walk before it got dark.

Yesterday I got him out to walk, but it was bad and he was kicking and screaming the entire time. So, once we turned the corner, I pointed to the stop sign at the end of the block and said ok, here's the deal. We're going to walk to that red stop sign, tag it and then turn around and walk back. He did it, whining and crying the whole way, and pissed at me anytime I tried to distract him with talk, but I think knowing there was an end in sight to my torture helped.

So tonight, before leaving the house, I said ok, here's the deal. We can either take Odin on a long walk, and you can ride in the stroller. Or, we can take a short walk to the red stop sign and back, just you and me, without the stroller.

Amazingly, he agreed to the stop sign! And this time, he was super chatty and talked to me the entire time. Success!

Of course, I got ballsy and as we were approaching our red stop sign target I asked him, hmmmm, I wonder if there's another stop sign at the next street? He said, maybe. So I said, how about tomorrow we check it out to see.

Okay Mama. Tomorrow.

:)

Organizing

One of the nice things about being home is that I'm finally getting to all of the little projects around the house that I've put off for too long.

Today I had a chance to get some of the cleaning supplies organized a bit, with this hanging rack. And also installed a holder for our millions of plastic bags (used as poop bags for the dogs).

Phew! Still a lot more on the to-do list, but it's nice checking off one now and again. ;-)

Passing the time

I laugh every time I look at this picture. Who the heck is this chunky monkey?!? :)

There are, of course, several obvious reasons why we're looking forward to the end of this phase of steroids - but another I've come to realize is, I miss my boy.

I miss his face, his smile, his eyes, his strong sturdy body that doesn't need help up the single step across our threshold. I miss the pure joy combined with mischief that Callum would show - by turning around and shaking his butt at me anytime he could.

I know I won't get all of that back. Not immediately. And I know it's not all because of the steroids. But I'm hanging onto the thought that perhaps some of my old boy will shine through again, once this phase of them ends.

For now though, we pass the hours watching movies, taking meds, playing games, arguing about how far we will walk down the block before turning back, and of course, talking about his favorite foods.

Chillin'

Minion has taken to lounging in any one of our sinks lately. He's a strange strange cat.