Our remodel begins!

Before the new house was even technically ours, we were working very closely with my Dad on a new design and remodel of the existing structure.  The house has great bones but there's so much more we wanted to do with it - and since Callum is not allowed around construction, we knew now was the time to get whatever we could, done - before we move in.

As it turns out, we've made tremendous progress these last couple of months, but we've also had some very stressful setbacks - as we've pushed and pulled with the County to allow us to do what we want to do with the house.  :)

Amazingly, we finally reached an amicable agreement (good thing the Connallys are not known for backing down I say!) just last week.  HOWEVER, all of that back and forth and arguing and discussing and redesigning really set us back, timewise.  Talk about stress!!  And, in the thick of it all, is my Dad, who's been carrying the brunt of it, mocking up new design after new design to meet his demanding clients' desires while at the same time, making sure to meet the County's crazy restrictions.  Yeesh.

Meanwhile, our contracting crew has started prepping the house to begin work which is so exciting to see.  They've got to put protective coverings over all of the floors and seal off the rooms we aren't touching (which, I'll be frank, aren't many).  They made quite a bit of progress today - the whole house looks a lot like this snapshot I took.  :)

I'm busy tracking the overall project, since our schedule is ridiculously tight.  :(   We need to be able to move in by August, just before school begins.  If you've ever done any sort of small remodel job at all (let alone large one!), you know how crazy that is, given tomorrow is April 1st!

And, when I'm not beating up my Dad or the contractor on schedule, or running Logan to soccer practices, or Callum to doctor appointments, I'm out scouting stone, tile, marble, you name it - grabbing samples where I can or snapping pics for inspiration.

It's fun and exciting work, but it's also quite a bit of work.  And, we've only just begun!!  Phew!!  :)

Rest time!

First soccer game

Happy Feet (Logan's team) defeated the Sharks, 4-1!

Friday afternoon treat

Man, I really love this photo of the boys. :)

Both boys, but mostly Callum, have been counting down the days until the new movie "Home" was to release (today).

I promised them if they were well behaved this week, and especially today at school (because this poor mom has been running RAG.GED while Jon has been traveling), that I'd take them to the movies after school pickup.

Callum is still dealing with a bit of a head cold, and now I've slowly been feeling more and more congested and under water today too, but I decided to take them and chance it anyway, since I remembered the last time we headed to the theatre right after school, it was super empty (and I couldn't go back on my promise since they really have been good kids all week!).

Lo and behold, it really was empty! Even though today was opening day, we practically had the theatre to ourselves (I think the timing is such that, toddlers are still napping and parents of older kids don't want to deal with rushing to the theatre right after the school bell rings - like this crazy Mama did).

The boys and I had a fabulous time and enjoyed the movie quite a bit. If you think I'm lying, just check out those faces (and don't they look smart in those glasses?!) :)

Keeping me company

Jon is traveling all week so I have a nice big empty bed all to myself.

Except, not really.

Notice how they don't scoot over and use the empty space. Instead they continue to lay RIGHT UP ON ME and push me to the very edge of the bed. *sigh*

Good thing I love these furry monsters. ;-)

New pillow!

Kim suggested I try a wedge pillow for Callum, since his coughing tends to keep him up at night. It just arrived today and he was so excited to use it (here he is "testing" it out while watching tv). :)

I suspect he'll still slide down over time but at least for now, so far, no coughing! :)

Summer Camp Registration

I'm filling out summer camp registration forms and have come up to Callum's medical history section. Surprise surprise, there isn't enough room. ;-)

Hopefully this won't scare them off! :/

Pentamidine Therapy

Callum's team has decided to switch him from a med we do at home (Septra) to a med at the hospital (Pentamidine). We have to come to the hospital each time, to administer it, since it's a medicine he takes by breathing into a mask, but thankfully it's only once a month which should be manageable.

Since we've had two admissions so far, in a relatively short time frame, due to neutropenia, the team thinks Callum may be more susceptible to viruses than many kids. He takes Septra, which is an antibiotic, as a proactive measure to keep a very specific strain of pneumonia at bay. But, Septra is also known to lower blood counts, so they're thinking it could be compounding the issue, when he's already low from fighting an infection. Since we have to stop chemo every time his counts are low, this is a bad fight to be in. And since chemo is the highest priority, we're hoping this switch will allow him to keep counts above the threshold (Pentamidine doesn't lower counts like Septra does). We'll see!

Anyway, today was his first visit. The first picture was when we first started. The medicine doesn't taste great apparently, and he pushed the mask away a few times since he didn't like it. But we talked him through it and I think he got used to it, so he was okay by the end. (See second pic, I had him play on his iPad the whole time too, which helped for sure). :)

A Special Breakfast

Logan has really wanted some one on one time with me lately. So this morning we went out on a date and had a lovely breakfast before swim class. We had a great time talking about the world over our delicious meal. Love this little guy. :)

Prepping for the next birthday party

I thought I'd try my hand at making the party invitations this time. I interrogated Callum multiple times over the last couple of months, to make sure he wasn't going to change his mind on the theme (it's Pokemon, for those that don't recognize it). So it better stick now! :)

Queen of the Leprechauns

Many friends jokingly refer to today as St. Bree's Day, but Kim told me of a new one that I think I may just have to adopt! Molly wondered if having a birthday on St. Patrick's Day made me Queen of the Leprechauns....

Why yes, I think so! ;-)

I actually decided to celebrate my birthday over the weekend with a few close girlfriends. We pampered ourselves to a luxurious spa treatment in the morning and then headed to a lovely "Afternoon Tea" brunch. It was really quite nice and I'm really glad we got together.

When I got home from my day out with the girls, I found a gorgeous bouquet of red roses waiting for me from Jon (he had to work, so he wasn't home).

Then, in the evening, Jon and I had a relaxing date night, scarfing down some delicious sushi, taking in a movie (The Imitation Game), grabbing a Boba Tea before heading home, and then catching up on another episode of Downton Abbey before crashing for the night. :)

Last night, Logan actually had one terrible nightmare after another, and kept us up pretty much all night. So, I let him sleep in this morning because he was so tired.

When he woke up, he thought he was going to get to skip school, because it was after 8am - but got really upset with me when I told him no, he'd still need to go to school.

That crankiness continued all through the morning and during drop off - he thought it wasn't fair that he had to go to school on a holiday (I explained we weren't in Ireland, and he didn't get a day off for ALL holidays....) and then he decided he didn't want to go to school because he wanted to spend the day with me, on my birthday.

*sigh*

It was an ugly rough morning so I was delighted to find ANOTHER bouquet of flowers waiting for me on our porch when we got home - this time some gorgeous tulips from Kim and Molly (thank you!).

I exchanged a number of emails with Logan's teacher all morning because, sadly, his funk continued long after I dropped him off. But fortunately, he finally perked up after lunch time and started behaving again. When Callum and I picked him up after chess class, he was in pretty good spirits, thank goodness!

(Although, he did let me know that on *his* birthday he would *not* be going to school!) :)

We three headed out to grab an ice cream treat after school and then came home to hang out together and munch on some leftover pizza (all dictated by the boys of course). Jon came home early, in time to see the boys before bedtime, which they were thrilled about - so they three played a few games together before we put them to bed.

All in all, not a bad way to spend Her Majesty's special day! ;-)

Kiss me, I'm a Connally!

Hope everyone had a fantastic St. Patty's Day!

(The gorgeous roses are from my awesome hubby)

1 year

A year ago today, Jon and I received some of the most devastating news two parents could ever receive.  Callum's diagnosis changed the world as we knew, forever.

Taken a year ago, after a morning of scary procedures

It's still fresh enough in my mind, that I often have trouble recounting that day's events (and the events leading up to it, for that matter).  And it still stings enough that I have trouble looking at pictures of our life shortly before we received the news.

On that day, and the days to follow, we were suddenly thrown into a world of hospital visits, multiple doctors, a battery of tests, exams and lab work on our little guy.  We've learned how to flush his PICC line and administer chemotherapy (and other gobs of medicine).  We've learned about the parts of his blood that count the most (for us of course), and have learned to live (as best we can), lab result by lab result.

Jon learning how to flush Callum's PICC line

We've learned what type of bandages and cleaning solution Callum's sensitive skin seems to tolerate the best.  We've learned what type of movies he enjoys when he needs to be comforted and what foods he demands after waking up from an LP procedure.  We've learned what type of monster our son could turn into as a teenager, during the weeks of steroidal rage.  ;-)

We've learned what questions we need to ask the doctors, and keep asking, when we visit the clinic.  We've learned how to decipher the incredibly non-intuitive insurance claim codes on our "Explanation of Benefits" and argue when something doesn't seem quite right.

We've learned we have an amazing group of people whom we can call family and friends.  We've learned that we couldn't have made it through this year (or future years) without their continuous support.

Finally asleep after a very long day (taken a year ago)

We've learned to keep an emergency overnight bag packed in the car at all times.  We've learned to live our lives more "by the moment", since who knows when our next hospital admission might be.  And we've certainly learned to cherish every memory, good or bad.

We've learned that Callum has an amazing spirit.  He is cheerful and bright, sarcastic and playful.  He is a tough kid, a strong fighter and a resilient flexible patient.  And he is becoming wise beyond his years.

We've also learned that Logan is a sensitive old soul, a watchful brother, mentor and friend.  His capacity to care for his brother, and the rest of his family, is enormous.  Callum's leukemia weighs on Logan heavily, and we've learned it has also been quite stressful for him.  He depends on his brother's cheerfulness just as much as his brother leans on his every embrace.

We've learned we're a pretty strong family and we all support and love each other very much.  We've learned we have an enormous capacity for stressful situations and trying times.

We've learned that sometimes these traumatic experiences can really test and tear families apart, but in our case, it has created a much stronger bond between two brothers and between husband and wife.

We know we still have a long road ahead of us, with some bumps along the way.  But we are truly grateful for what we have today and optimistic of what our future holds.

What a day!

Phew, what a day!

First, Callum and I got up and out of the house early so we could get back to the hospital to check his counts (since, while he was discharged on Monday, he still was quite neutropenic). Here he is looking pretty cute (and older!) with his new haircut while we waited for our team to see us.

Thankfully, there was no real drama with his poke. They had to flush it several times in order to get a good blood return, but I guess that can happen after he's been accessed for so long. Otherwise, it went really well and I LOVED the two nurses working today, they were like swift ninja pros, but still gentle as ever with Callum's tender port.

And, great news, his ANC jumped up to 1021, which means we were able to restart his chemo at home tonight. Phew!!

This evening was Logan's first soccer practice with his new team/league. Overall he had a fantastic time. However, about 10 minutes in someone kicked the ball and it slammed smack into his crotch. He came running over to me on the sidelines - he wasn't yet crying, just stunned. When the shock went away, the pain hit him like a wave, and suddenly the poor guy was beside himself in tears, asking me WHY did it hurt so much?!? :)

After I got him to calm down I said I guess we'll need to get you some protection, like Daddy wears when he plays rugby. He seemed to like that idea, so back to the store I guess I'll go, to see if they've got any kid sized cups to buy (they must, right?!). I certainly hadn't thought we'd need to get some this soon/young, but boy was I wrong!

Poor guy. Other than that, and another incident where he fell and scraped up his hands and knees, he did really well and enjoyed it actually. So, I hope that means he'll have more fun this season.

Funny side note - as it turns out, Logan's coach is an old coworker of mine. It never ceases to amaze me at how small this world is and how many times I run into old friends and colleagues! :)

Haircuts!

The boys had a haircut appointment two weeks ago. But once Callum and I were admitted I canceled and pushed it out a week. And then pushed it out again last week.

They REALLY needed a trim :) so I'm glad we made it today!

What's even nicer, their stylist, Santina, also gave me a gift bag filled with a bunch of awesome products, a water bottle and a gift card for a shampoo and blow dry sometime. She said she figured the products/water bottle might come in handy for our next hospital stay. And that the blow dry visit would be to do something nice for me too. She is SO RIGHT! (And so crazy sweet!!) :)

Good ol' fashioned brotherly love

We've been discharged!

Phew!!

This has been our longest stay yet, clocking in at 14 days, but we've finally been discharged!

It wasn't without more stress though. Callum woke this morning to a wet bed - I thought he had an accident at first (since he had slept in), but nope. Pants etc were dry.

Turns out his line was leaking! What made this a pain (and horribly bad luck) was that we couldn't flush and "heparinize" his port before deaccessing him.

So, we had to remove his dressing and needle and repoke him so that we could get the flush and heparin in before going home.

It was awful. While the nurse was removing his dressing he was screaming "Don't take it off! I don't want to go home!!" :(

(The first pic is from my viewpoint, you can see how red and agitated his skin gets from the dressing!)

Then after that, he was crying "why do I have to get another poke?!"

Like I said, awful. Heart breaking. I held him most of the morning.

And then, as if that wasn't bad enough, when the nurse tried to reaccess him, the needle bent!! Which meant, you guessed it, another poke to try again.

It was hell. Poor guy was sweaty and heaving for many minutes afterward, not wanting me to let him go. :(

Thankfully these little guys tend to recover pretty quickly. So he's much better now (albeit tired) and we are finally heading home. Time to get out and enjoy the sunshine! :)

Visitors

The last few days we've had many visitors, which has been nice for both of us as our stay grows longer and longer.

Thursday, Kim stopped by in the afternoon to hang out and play games. It actually ended up being perfect timing since I was doing a lot of back and forth with the inpatient team that day, so being able to focus on the conversations with the various doctors and staff coming in, while Kim kept Callum quiet and distracted was exactly what I needed (thank you Kim!).

Friday afternoon, my mom stopped by and relieved me for a few hours so that I could go home (my first time out of the hospital/home!) and hang out with Logan. We had a nice evening together, watching a movie and munching on delicious pizza, before I headed back up to the hospital (thank you Mom!).

Saturday morning I had a massage scheduled, to work out some issues with my back. Originally, Jon was going to come up and stay with Callum while I went to my appointment, but his work got in the way so Paul and Logan came up instead. It ended up being better actually - since the boys hadn't seen each other since the first day Callum was admitted, and they had both really missed each other quite a bit. They got along amazingly throughout the day, playing board games, iPad games and watching movies together.

Because they had such a nice time, Callum really wanted to see his brother again today. So I checked in with Paul to see if they were up for another visit after Logan's swimming class. They were, and hung out again most of the afternoon (thank you Paul!).

The window to our room looks out onto the front circular drive so Callum and I watched out the window while Paul and Logan left this evening. As Logan waved goodbye to us from outside, Callum said "Logan! I miss you!"

Heart breaking.

Jon ALSO visited us tonight on his way home from work - yay!! He tried to take a few pics with Callum but all Callum wanted to do is goof off, as you can see from the last pic. :)

We remain optimistic that we'll get to go home soon - maybe even tomorrow, we hope! We certainly all miss each other dearly.

Extra padding

One of the nursing assistants heard my back has been flaring up so she brought me an inflatable mattress topper! It seemed a little bit much at first (doesn't it look crazy?!) but we've been lounging on it for the last 30 minutes and it feels pretty good, so we'll see how it stacks up tonight. :)

In today's episode of "Our Rambunctious Monkey"

As our stay gets longer, the walls of our room tend to start moving in, and Callum is getting antsier.

Last night, he discovered the foot pedals on his bed would raise and lower it, creating the perfect jungle gym for our energetic guy. ;-)

Callum's ANC continues to go up and down (but mostly stays down - today he was back down to 30). :( All of his other numbers look really good though - so the doctors remain optimistic and keep cheering us on with an "any day now!" attitude.

Day 10

I dream of eating delicious food once again, and hitting the gym, the minute we're outta here. 😜

Our little gymnast

He does this sort of stuff constantly. All day long. Without even thinking about it. He's a bundle of energy (I guess who wouldn't be, since we've been trapped in a small room for so long) and thankfully, remains in great spirits, despite the situation. The doctors love seeing him because he continues to show such positive energy. :)

After a low of 23 yesterday, his ANC finally moved up a bit today (but still very low, he clocked in at 38). I'm proud to say I've been watching the numbers close enough, that I predicted to the doctors yesterday, that I thought we might finally be turning a corner. :)

Now, we just have to keep hoping for the numbers to increase (doubling or tripling is fine by me!) so we can get the hell outta here! ;-)

Heat and Ice

One good thing about being in a hospital when your hips and back flare up, is that the super nice nurses will hook you up with heat and ice packs for the night.

Of course, my hips and back wouldn't be flaring up if I weren't sleeping on lopsided uncomfortable hospital pullout beds, to begin with. ;-) But we'll just ignore that little fact for a bit and thank the kind nurses for coming to my aid!

Hakone Gardens

I had really wanted to take the boys to Hakone Gardens on Sunday since there was a special Chinese New Years celebration happening. Of course Callum and I couldn't make it but I told Jon that he and Paul (who flew in last Monday evening to help us this past week while we've been in the hospital - thank goodness!) should take Logan, since he might like to see where Mommy and Daddy got married. :)

So they did! Unfortunately they missed most of the celebratory stuff, but it sounds like they still had a fun time walking the gardens and showing Logan around. :)

Side note: I can't get over how big Logan is looking these days... Jeez!

Still here...

I took this first pic of us on Saturday morning when we were lounging and hoping to go home. The Attending had told me on Friday that as long as Callum's cultures came back negative, we'd be all set to go home. However, Saturday morning that story changed. Callum's counts had dropped and while the cultures were negative (yay!), the Attending changed his mind and wanted to keep us another night.

So, I really let him have it.

I understand when there's a "change in the guard" from one Attending to another (which happened to us between Thursday and Friday), since each doctor will be more or less conservative than another. But to have the SAME doctor switch on me overnight really pissed me off, to be quite honest.

And, he got that message loud and clear. :/

I know a lot of my blow up has to do with the fact that we've been trapped in a room for 6 days too long. And I'm exhausted and stressed and, as I've blogged already, we've certainly been put through the ringer this week, which has made me abnormally on edge and cranky (even poor Jon hears it when we touch base on the phone each day).

But I really don't like being told one thing and then having someone change his mind the next. And, while Callum's counts *are* low, we've been home with lower. And everyone goes on and on about how great he looks and how wonderful his toes look and my how much energy he has does he always jump and okay and run around like this? (Yes pretty much) and on and on and on. But I don't think they really understand the impact to our entire family, by keeping us here. And while I totally get that he *could* have a break and hit a fever when we get home and require us to turn right around and come back, I'm curious how often cases like ours result in that scenario vs. nothing happening and the child recovers quite nicely at home. :)

So, here we are. Sitting and waiting. Watching lots of movies and playing games. With both of us crawling out of our skin, since Callum is still on isolation due to his cold. :(

I did finally lighten up a bit after the weekend. So yesterday I joked with the Attending that I wouldn't mind if he wanted to start Callum on steroids (since steroids will beef up his numbers). Everyone had a good laugh at that and he told me I've been here too long, if I'm saying that. ;-)

So very true!

Despite my grumpiness, Callum remains in great spirits (he's getting food on demand, gets to play on his iPad freely, and gets to be with Mama 24/7 so who can blame him!).

Yesterday was a week since we were admitted and his port was accessed, which means he was due for a needle change (they have to change the needle in his port every 7 days). It's never a fun process but he did okay. While he was de-accessed and in between his antibiotic doses I had him take a bath, which he loved. He was standing on the tiled bench at the back of the bathtub asking me if I had brought his goggles.

Why?

Because he wanted to jump in.

:)