No More Chemo

Today was momentous - the nurse took down Averi's last bag of chemo!  Of course we still have to stick around until her counts do their thing, but there will be no more pumping poison into my baby's heart.

(Yes, we did take a picture of the bag coming down, special blue gloves and all.)

Averi seems to be doing well so far.  She did need a blood transfusion yesterday, which always makes her happier and more energetic.  Unfortunately, my grandma donated blood last week and it hasn't gotten to the hospital yet so Averi had to get someone else's blood.  Either way, it means that her body is doing what it's supposed to after receiving chemo and we are on the right track.

Memorial Day… more like Labor Day

This past weekend began pretty mundane, which in this family we relish.  I packed my bags and began my weekend shift taking care of Averi at Nationwide Children’s – giving Tiffany some relief from being in the hospital 24/5.  Due to it being Memorial Day weekend, I was looking forward to spending an extra day with my little angel.

Friday night rolled by relatively quietly without any issues.  What a relief.  This was going to be a nice relaxing weekend.  I would get to spend some quality time with Averi and unwind from the day-to-day stresses of work.  She was feeling much better due to the antibiotics and her temperature had dissipated so we could leave the room and go on walks or go to the kids’ room and play with the toys.

My relaxing weekend with Averi was shattered Saturday night.  A rash showed up on her lower torso.  Averi wasn’t too bothered by it at first, but by nightfall she was tugging at her hospital gown trying to scratch.  The rash had spread up her stomach and back, all the way under her central line dressing on her chest.  The physicians became concerned and order some Benadryl to help with the itching.  This helped calm Averi down a bit so she could at least sleep through the night.

Sunday returned to relative normalcy.  Though Averi was still a little agitated by the rash, it had diminished enough where we could play on the floor mat and the distractions would make her forget about the itchiness.  We were having a good time playing when I stepped out to use the restroom.  When I returned I saw a naked bum sticking out from under the hospital gown.  Upon further investigation I found that Averi had scooted out of her diaper.  Luckily, there wasn’t a mess to clean up.

What a cute little bum!

This morning I heard Averi start making noises just before 7am.  I was not ready to get up and start my day off from work just yet so I tried to ignore her babbling and blowing raspberries.  I dug my face into my pillow to block out the light.  I went unconscious for what seemed like another hour or so, but when I looked at the clock it was only 15 minutes.  Averi could now see me stirring and began to make her loud calls for attention.  It was hopeless going back to sleep now.

I rolled out of bed and made my way over to Averi’s crib.  I stopped in horror – no shock.  Averi looked up at me with the biggest grin seemingly saying, “Good morning to you dad!”  She was sitting in her bed completely naked playing in brown goo.  She had wiggled her way out of her hospital gown and stripped off her diaper.  Afterwards – and I say afterwards because her diaper was still clean – she decided to poop all over the bed and spread the good cheer.  Averi had used the brown spread and was redecorating her bland, all-white crib.

Poop was all over the bars, the sheets, her hands, her central line caps, her head…. you get the picture.  To top it all off, Averi had completely removed her central line dressing thus leaving the site exposed.  This is a HUGE no-no, especially with an inordinate amount of bacteria-laced feces in the vicinity.  Needless to say, my Memorial Day ended up being more of a Labor Day as I spent the rest of the morning cleaning EVERYTHING, especially Averi. 

After all was said and done, my rational mind told me I should have taken a picture before cleaning everything up, but the worried father in me just wanted to get his daughter who has a compromised immune system cleaned up as soon as possible to avoid any infections or contamination.  I hope I wasn’t too late.  They took some cultures and we’ll have to watch her closely to make sure she didn’t contract any infections.

Needless to say, Averi is no longer allowed to sleep in just her hospital gown.  We now keep her in a onesie as much as possible to avoid any similar situations.  What a day to remember!!
~ Dan

Reality Check

We've met many wonderful and amazing people while living on J5 (the Hematology/Oncology floor) but some of them touch you more than others.  One family we've grown close to has a 1 yr old son with leukemia.

Our journeys have been very similar.  Just like Averi, R has to stay after each chemo treatment until his counts recover, so they are stuck here for weeks at a time.  His mom stays with him overnight like I do with Averi, they have another son who is 10, and his parents always have smiles on their faces.

His mom and I often visit in the halls during nap time and exchange our frustrations and changes in life.  R and Averi often had 'dates' in the hall that involved waving at eachother from a distance and not touching anything. :)

Last time we were in the hospital, R finished his last chemo and had his central line taken out.  I was sad to see our friends go, and a little jealous since they had started chemo after us, but mostly excited that they were finally done.

Yesterday, R was admitted back on the floor.  In just over a month his leukemia has come back.  The options they were given for treating him this time were even more brutal and have extremely low chances of success.  He was moved to the hospice room at the end of the hall today.

My heart is breaking in so many ways.  It's just too close to home.  I can't even imagine what his parents are going through - and yet all I can do is realize that that could be us in just a month or two.  His biopsies were clean just a month ago and now he's living in the hospice room.  His parents only had 7 short months with their healthy baby boy.

I have no idea what to do for them, because really there's nothing I can do, and I'm a mess.  I feel so helpless.  I hate cancer and I hate the void that it is going to leave in R's family.  I want them to know that they will be able to see their son again.  That, yes this sucks, but families are forever.  I want them to realize how blessed they are to have R and experience the joy he gives them, even when it comes with trials.  I want them to be happy.

Stupid Poop

Why do I always speak too soon?  Last night as I was laying Averi down in her bed for the night, I thought her head felt a bit warm.  The nurse had just taken her temperature with a tempadot (disposable thermometer) and it was normal.  I decided to pull out our speedy digital thermometer and take an oral temperature.  Sure enough, she had a fever.

Fevers for an oncology patient are totally different.  As always, it meant drawing more blood cultures, starting IV antibiotics,  and constantly checking vitals.  As the night progressed, her blood pressure dropped low enough that they had to give her a large saline bolus in hopes of adding some volume to her blood.  That only lasted a little while before she dropped and needed another bolus.

By this morning, the nurse practitioner came in and told me that if she needed another bolus, Averi was going to be transported to the PICU.  The nurse continued to do vitals every 30 minutes for the entire day.  Poor Averi is such a trooper and put up with it even though she felt horrible.

When the doctors came to do rounds, they informed me that the cultures taken on Tuesday had grown gram negative cells and they added a third antibiotic.  We all know what that means - the nerve raking cap change I did at home didn't help.  The poop got into her blood anyways and now she's sick.  Ahhhhh!

Thankfully her blood pressures have stayed level today and she hasn't had to go down to the PICU.  Hopefully the antibiotics start to kick in soon and she feels better tomorrow

The Last Time

It finally happened!  Today they hung the first bag for Averi's last round of chemotherapy!!!

I'm finally starting to let myself get excited.  I know we still have to be at the hospital for another month or so, but this is the last time.  It's the last time I have to haul my cart load of stuff into the room and unpack.  It's the last time we have to sit and wait patiently for Averi's blood counts to hover, drop, hover, drop, bottom out, and finally come back up.  It's the last time our family has to be separated so much.  It's the last time Averi has to be nauseous and puke simply because her body is being pumped full of poison.  This is the last time!!!

Today was the fastest we have ever gotten out of day hospital and into a room.  The doctor liked her blood counts from yesterday so the nurse didn't have to redraw them today and then wait for results.  The floor is also really full and they were trying to put someone else in our room so the nurse went ahead and moved us in before the chemo was even started. It was really nice.

My only complaint (coming from my "this is the last time and has to be perfect" thought) is that we are in the corner room, so we have to share an anteroom with the room next door.  It just makes me nervous because it's easier for other people's germs to get into Averi's room - especially when our neighbor has a sign on his door requiring everyone to wear gowns, masks, and gloves to enter.

After telling the doctors about Averi's little mishap with the poop getting under her central line caps, they decided to draw blood cultures just in case.  That way if Averi starts to get a fever, we already have something growing instead of having to wait 48 hours for the cultures to grow.  At least they didn't start her on antibiotics (normal protocol when they draw cultures) since it happened a few days ago and she isn't showing any signs of being sick.

Oh, and did I tell you?  This is the last time!!!

So Close

I may or may not be 5 weeks behind on posting. =P  In my defense, this last cycle has been a bit busy, in true Averi fashion.  It hasn't been all bad, but it certainly didn't go as smoothly as my naive brain wanted.  So, sit back and enjoy the ride (hopefully in fast forward) ...

Averi's counts have finally reached a suitable level to start the last cycle of chemo - 2747 to be exact.  As always, it took a little longer than we had hoped, but that's how Averi likes it.

She is scheduled to start the last round tomorrow, but to be honest I'm not letting myself get excited until that last bag of chemo has been hung and started.  Luckily, her counts are high enough that the chance of them dropping down below 1000 in one day is really slim.  We are so close, hopefully everything goes well tomorrow and this will all be over soon!

'The Problem'

When my dad went to pick Averi up this morning and announced that, "we might have a problem," I came sprinting.  You never know what that means with Averi, but this time it meant POOP.  Luckily she had scooted herself into the kitchen because 'the problem' was in piles all over the floor.

It took 2 people to strip her down and keep her hands out of the mess.  I might have said this before, but it is really hard to thoroughly clean a person without being able to put them in water.  As I wiped her down over and over again with wipes, I realized that 'the problem' had just gotten scary.  Her central line ports were covered in poop as well.

I was able to clean one of them off but the poop had gotten pushed way under the cap on the other line and I couldn't get it out.  The only solution was to change the caps on the lines and clean underneath them.  I have seen this done many many times (every three days when inpatient) but actually doing it myself was totally different.

I got out all my sterile supplies, put on my sterile gloves, and got to work while my mom handed me many many alcohol wipes.  Normally no one cleans the end of the port when the cap is off because the risk of wiping something into the port is too high, but I didn't have that option, this port needed to be cleaned...and fast.

It took what seemed like forever and I was dripping sweat by the end of it, but I got those ports cleaned and those caps changed.  Thankfully, Averi is used to all these medical shenanigans by now and does an awesome job holding still.

Now, the only thing left to do is wait and make sure she doesn't get sick...no pressure.