I have to remind myself every single day that I am doing the best I can.

There is no manual to having a child with cancer (except the terrifying binder they hand you in the hospital on day one) and there certainly are not any instructions on how to do any of this AT HOME every day, let alone do it properly.

We have been home for 13 days now, and every single person I know asks me the same question.

“Are you happy to be home?”

My reply is always the same, “This is not our first rodeo.”

People pause.

It gives them something to think about.

I just smile.

Sometimes there isn’t always a yes or no answer.

Of course, being in the hospital for an extended period of time is very stressful. It is uncomfortable. There is a lack of privacy and constant disruption. All of which is hard, but it is the worry of your child being ill enough to be admitted under some one else’s care that is most unsettling.

This constant anxiety and feelings of helplessness somehow leave only gratitude for the doctors and nurses. This perspective makes being at the hospital less awful.

Now, think about what it must feel like leaving the hospital with the same level of stress and fear, knowing just below the surface your child is still very sick (but out of immediate danger) and bringing them home where they will be entirely in YOUR care.

Honestly, it is scary as hell.

Being a nurse twenty-four hours a day is unbelievably exhausting but having no one to ask questions to or follow up with is the most terrifying.

There is no call bell at home.

No breaks.

You can’t just run to Starbucks and get a coffee while the child-life therapist comes to visit and there are no doctors on the ward catching up on paperwork to just run ‘something’ by.

Cardiology, oncology, physiotherapy, and dieticians, are not just a page away and you can’t jet downstairs to dump on your nurse clinician just because you are having a bad day (poor Naomi I am getting her the best Christmas gift).

Nope.

Once you leave the hospital and come home  all the management and responsibilities of the disease and the care rest on your shoulders.

You are the ONLY person your child has to count on. The constant pressure is #ALOT.

I’m not going to lie or try to be brave or play it down. It is a shitload to manage and the Jayrod and I have screwed up a more than a few times already.

It has been a huge learning curve.

You’d think by our fourth go round, we’d have our shit together.

Nope.

In fact, we’ve both recognized part of our ability to cope for so many years has been because we’ve blocked out memories and erased skills from previous relapses.

As a team we have had to re-educate ourselves on almost everything cancer related.

We are both frustrated. There has been some yelling (mostly me) some name calling (sorry to throw you under the bus Jay) and more tears than I’d like to admit.

There is no way to sugar coat it…..It is all so bloody difficult.

The medication/feed schedule during the day is every 2 hours.

The first week home, Jared and I were running on about two and a half hours of sleep a night. We didn’t have the proper feed pump, bags or supplies and we had no other option but to wait for one to be ordered and delivered to the house.

It took about a week to arrive and no one was getting any rest.

Anyone who has had a baby will understand, lack of sleep makes you crazy.

Also, because of Logan’s difficulty with swallowing, most of her medications have been switched from pills to liquid. Checking the PH in her stomach, flushing her line and measuring syringes every two hours (while feeling like a zombie) can leave a fairly large margin for error, apparently.

BUT it doesn’t seem to matter…

Despite zero sleep and rusty nursing skills we have been  assured just as the card says, that we were doing a fucking GREAT job…..

The reality is, WE aren’t so sure.

So far, we’ve had 2 feed bags explode ‘batter like’ substance (feed) everywhere, we’ve re-ordered and forgot to pick up prescriptions twice, oh and we’ve accidently overdosed Loggie on blood pressure medication for 4 solid days.

UGH.

Not exactly sure how it happened (maybe it was two hours of sleep a night) but it was during the early morning routine when the bottle of meds was suddenly empty that I knew something was wrong.

“SHIT!!!!…..JAYROD!!!!” I shrieked at the top of my voice.

He came running.

“How many ml’s of BP meds have you been giving her every morning?” his face went white.

“Fifteen” he said, “Just like you wrote down.” I watched in horror as he pointed to the hand written instructions I left out for him.

“Did you even think to cross-reference what I wrote down to what the instructions are on the bottle?” I asked irritated (mostly at myself).

We both looked at the empty bottle in fear, there was no point in the blame game, any way you look at it, it was an epic fail on both parts.

I called the hospital.

The scary cardiologist (who isn’t so scary anymore) assured us not to worry. He told us she’d likely pee out all of the excess meds and if she hadn’t already had a seizure we were probably in the clear.

Fuck.

He also suggested having her kidney function checked before we started chemo this week but assured us it was ok. Social services would not be coming to our door and he told us we didn’t need to feel so terrible.

Apparently we aren’t the first parents to overdose our kid.

I am sharing this incase you think you are doing a shitty job.

Trust me, it could be worse.

You too, are doing a fucking GREAT job.

Roll with it.

None of us are perfect and as parents, sometimes, we put impossible expectations on ourselves when there is no need for it.

Let it go, you are only human, you will screw up and the tough days will pass.

To be honest, the JayRod and I, as parents, are just barely keeping it together.

This whole 4^th time at cancer is devastating and we are feeling defeated.

The dust has settled and the reality and magnitude of what we are facing has hit us like a ton of bricks. Most days my stomach feels like it is in my throat.

We’ve moved on from disbelief to shock. Most of the time the shock just leaves us paralyzed.

I see Jared walking around in circles. Usually, he’s an efficient guy but putting up the Christmas lights took him two weeks. I am spending most days staring blankly at the wall, endless thoughts are only interrupted by the sound of my IPhone alarm that ironically plays a song starting with the words “It’s a long road…..” (remind me to change that)

We are both feeling lost, scared, angry and tired. The problem is, it is not necessarily at the same time, which makes holding each other up pretty hard to do.

Our life is no longer our own and it is devastating but what we can’t come to terms with is what the future may bring. Time, in theory, should be precious but when every day is so hard to get through, how do you actually enjoy it?

See, I told you, the answer is long.

Yes being at home is great, but it also feels foreign.

It is no longer a place to just relax and unwind after a long day. It is now the place where we spend the long days.

We worry about the stairs, the shower and the tiny ensuite bathroom being to hot for Loggie’s blood pressure. Trying to maneuver the IV pole over the carpet upstairs is a hassle. We constantly listen for the beeping of the feed pump, the alarms on our phones to go off indicating it is time for another bolus, and every movement Logan makes triggers the baby monitor.

Yes, it is nice to drink a glass of wine out of an actual wine glass and shower in my own bathroom without wearing flip flops but even that is not as good as I expected.

Nothing seems to be as relaxing or as wonderful as I remember it being just a few months ago.

Funny how moving ‘the bar’ gives perspective.

Everything has changed.

I am on edge. Jared is on edge, Logan is so tired yet trying so hard to be strong for all of us, and Brody seems to be begging us to keep it together.

To top it all off, it is Christmas! Ugh.

The time of the year when it is customary to rejoice, reflect, plan ahead and be grateful for what you have. It could not have come at a worse time.

I am desperately trying to get into the spirit.

I have my tree up. The house looks beautiful, I’ve done some online shopping and I’ve vowed as Clarke Griswald to make this “The hap, hap, happiest Christmas since Bing Crosby tap danced with Danny fucking Kaye. So when Santa squeezes his fat white ass down OUR chimney, he’s going to find the jolliest bunch of assholes this side of the nuthouse.”

But so far the only thing that is entirely possible IS this side of the nuthouse.

Thank god for friends and family. Thank god for people who bring food and show up without asking.

Thank god for friends who throw amazing and supportive fundraisers just because they want to help and thank god for perfect strangers who show up to those fundraisers just to give you a hug (and a few bucks😘).

This yo-yo of emotion is so overwhelming. Receiving so much love and encouragement and support is beyond anything our family would have ever expected. We are in complete awe of how much goodness and kindness and selflessness so many of you have. We can’t even begin to say thank you because our words could never begin to reflect the gratitude we have in our hearts.

This part….

The awesome…

Come together…

How can I help?

I am here for you…..

You’ve got this…..

I’ve never met you but I love you part is what makes all the shittyness, bearable.

It is why we have the will to continue on. It is why we don’t want to give up or feel sorry for ourselves and it is also what makes us so incredibly proud of our Loggie-Bear, and her ability to connect so many people with her beauty, strength, and grace despite having to face so many difficult circumstances.

Time and time again.

We know there is something so much bigger than just cancer going on here.

I learned in India that struggle is universal and it is what connects us all.

I believe that.

It is not success, or wealth, or beliefs, or even experiences that connects us.

It is struggle.

We all know what it feels like to struggle and we all know what it feels like to need love and support.

Thank you so much for your compassion.

The gifts you have given us have forever changed the way we see the world and we promise to always do our best to be the kind of people you have show us you all are.

On that note, we trudge forward.

Today is our first full day of chemo at home.

We’ve never done chemo at home and are a little nervous about handling it ourselves.

There is something weird, awesome, and terrifying about holding a drug in your hand and administering it directly to your child with all the hope you have in your heart.

Basically, you don’t want to fuck it up.

So far…we’ve messed up once.

In less than 24 hours we’ve already made one trip to the ER.

GOLD STAR FOR THE LAY’S!?!😩

This round will continue until mid January. There will be 17 doses this weekend with a couple more doses through the holiday season. After it is over we will have another MRI to check for progress, and hopefully shrinkage.

On a good note, we think some things are improving for Logan. Her blood pressure is stabilizing and she is more alert and awake during the day.

She has had a few setbacks but we aren’t dwelling on them. She failed a breathing study and we will need to do further testing in the new year to find out exactly why. The answer is probably related to the tumour so it’s a good thing she’s getting another round of chemo now.

Yes, we also did meet with a new surgeon. Yes, he is super rad.

He offered some hope. Not in a “I can fix all of this kind of way” but he did say that maybe he could attempt to get a biopsy so we could participate in a new cutting edge study and he did mention that while he was in there if he could work any magic with his laser he’d try and give that a go as well.

We left happy.

Surgery is not something we will take lightly, it would be a huge decision to make but we are comfortable knowing that if it comes down to not having any other option, we have a rock star surgeon in our back pocket.

And so it goes….

Our life continues to be all over the map. Right now our GPS is set with a direct route back and forth to the hospital. Every day our route has ups and downs, there is so much to be sad about yet so many things to be grateful for too.

Christmas is here and this year is almost over.(Thank God)

We aren’t exactly where we thought we’d be (Thailand on a beach 😉) but somehow we know we are exactly where we are supposed to be.

We are all together, we are surrounded by tons of love and support and we truly ARE doing a fucking GREAT job…..

RIGHT?