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.

Still Not There

I have been trying really hard to still get some PT and OT in while we are at home.  I discovered that an upside down plastic shoe box makes a great bench for Averi to sit on and the couch with no cushions makes a great place to work on kneeling.

Averi has been tolerating her orthodics really well (I was a little worried since she's never really had shoes on her tiny feet before) and is even standing on her own for 10-15 seconds when propped up against the coffee table.  I know that sounds like a really silly accomplishment to a typical parent but it is amazing compared to before when she wouldn't even bear weight on her feet at all.  She is moving in the right direction and we are so proud.

P.S. Dan took a video of her standing but she is very grumpy while doing it and it looks more like child torture so I will wait until another time. :)

After visiting the clinic on Monday, Averi's ANC was 774.  Since it was on it's way up again, they scheduled us to go back today.  Of course my hopes were smashed by a measly 874.  I really thought she'd be admitted again by the end of the week since tomorrow will be 2 weeks that she has been home.  She will get there eventually, just on her own schedule as always.

Up and Down

Monday's ANC - 799.

Today's ANC - 560.

How do such tiny little blood cells mess with our emotions so easily?  Can't we just get this last treatment over with?

The Perfect Gift

After dropping down to zero on her birthday, Averi's ANC doubled from 44 to 91 to 182.  On top of that, she hasn't needed oxygen for the last two nights.  Yesterday the doctors decided that if her counts continued to go up today and she didn't need oxygen, she could go home.

I woke up excited this morning since she hadn't needed any oxygen and went to find the nurse so she could tell me Averi's ANC.  I had great plans of packing and being ready to go when the doctors made their rounds so we could be out before nap time.  Of course it had gone down to 169.

By the time they made to our room at 11:30, I had already admitted defeat and was still in my pj's.  Out of the blue they announced that Averi's counts have been trending upwards and they trusted us to bring Averi in if any problems should arise.  Seriously, we can go home?

It was a total surprise and the perfect Mother's Day gift!  I started packing in a hurry and then sat and waited for the discharge papers (the doctors couldn't be too nice and let us get out at a decent time).  As always, Averi fell asleep 10 minutes before we were allowed to leave.  Another nap time lost but another weekend as a family gained.

Just in case you were wondering, here is what moving out of the hospital looks like after 3 1/2 weeks.

And yes, moving in looks exactly the same.  Babies come with baggage you know.  (P.S. I will continue to call her my baby - regardless of the fact that she is now 2 - until she is walking and defined as a toddler by default.)

Bald is Beautiful

As one last birthday gift, I decided to buzz Averi's head last night before she went to bed.  It didn't quite go as planned.  Her hair is so thin and wispy that the clippers just pushed the hair over and didn't cut them.  So I moved on to plan B - scissors.

Before: (don't those pathetic eyes just melt your heart?)

I know it's not even, but the hairs are so far apart that no one can tell.  It also would have been nice to get rid of more of it, since it has to be itching her to death, but at least the longer wispy hairs are all gone now.  She now officially looks the part of a cancer patient.
After:  As Great Grandpa Davis always says, "Bald is Beautiful!"

I thought she looked exceptionally beautiful today, maybe its because she's 2 or because the lack of hair leaves you dwelling on her gorgeous eyes, so I decided to take some snapshots.

She kept scooting forward to get to the camera so I eventually gave up and took some shots from above.  Her smile is contagious.

Every now and then Averi does something and I feel like I've been given a short second to see her soul.  For that brief period of time the DS melts away and I see the person inside who's not weighed down by that extra chromosome.  I don't want this to come out wrong, because I wouldn't change a single thing about Averi, but it calms my soul to know that the perfected Averi, the spirit that I will spend eternity with, is still deep inside her.

For whatever reason, this picture is one of those moments for me (I think it's because it reminds me of Kaili when she was little):

Bald really is beautiful!

'Bird'day Girl

I can't believe Averi is already 2 years old!  I feel like life is crawling along right now but I also refuse to accept that Averi has blessed our family for so long.  The last two years have been completely different than anything I had planned, but I wouldn't change them for the world!

To celebrate her birthday, I made a milk, soy, oat, and rice free cake just for Averi (don’t worry, I also made 4 dozen more yummy cupcakes to share with everyone at the hospital).  I modeled the cake after Averi’s favorite toy, a little bird that she loves so much the color is starting to rub off.

Other than signing bird when she saw it, she wasn't as excited about the cake as I thought she would be.  All the nurses came and sang happy birthday and then we handed the cake over to Averi.  She put one finger in the icing and decided she was done.

Thinking she would get the idea if she tasted the cake, I put a piece in her mouth.  She then proceeded to cry and gag until I dug the cake back out of her mouth.  It was a great display of my awesome parenting skills for the nursing staff. :)

It was a good thing we put her in a gown so she wouldn't get icing all over her dress when she dug in.

 (Sisters telling birthday secrets.)

After partying in the family lounge down the hall, we headed back to Averi's room.  Kaili insisted on bringing her new tent to the hospital so she and Averi could sit in it while opening presents.

Averi, always the cautious one, wasn't too energetic about opening the presents either.  Kaili wasn't patient enough to let Averi warm up and opened almost all of them before Averi could even get her fingers on them.  It was very funny.

On the rare occasion that Averi tore a piece of wrapping paper off, she wouldn't tear any more until that piece was removed from her presence.  She gets her neatness from her mama.

Averi was very excited about her presents, especially the jumbo jars of baby sweet potatoes.  My favorite was the new shoes we got for her.  We tried them on her to make sure they fit over her new orthodics, and they did.  The size difference with everything on is enough to make anyone giggle.

Although it was one more holiday to mark off that we spent in the hospital, it was still a lot of fun.  Thankfully, Averi is young enough that it didn't matter where we were, and the nurses were great company compared to the empty house we would have had at home (since we can't have anyone over right now without first dousing them in sanitizer).

The only bad thing that happened today was that Averi's ANC dropped back down to 0 after two days in the teens, but it won't stay down for long.  We will be out of here soon and moving on to her final treatment.

Averi, we love you so much and look forward to spending many more birthdays with you!

2 Years Old!

Now that she's 2, Averi is accomplishing so much.

She weighs in at almost 19 pounds and is officially wearing 12 month clothes.  She has 11 teeth and would use them to only eat sweet potatoes if it were up to her.  She can stack 4 blocks, put coins in a slot, and point to her head, ears, eyes, nose, and mouth.

She loves mirrors and will smile and blow kisses to herself all day.  Her second favorite toys, other than her bird,  include anything found in a hospital setting - syringes, paper wrappings, and tempa-dots (disposable thermometers).  She also enjoys drawing on the magnadoodle, toys with stretchy 'tentacles' that she can pull on, bubbles, and hitting balls to make them go down a slide.

Averi loves music and is always dancing.  She likes to sit next to her star stacker, press the button on top, and bounce up and down - over and over again.  The hospital provides a 'relaxation station' that plays soothing music 24 hours a day and shows videos of animals.  It is always playing in her room and I have recently tracked down where to purchase it so we can have it at home.

Recently Averi's signing has really taken off.  She can now sign mama, dada, please, all done, more, eat, play, clean, doll, bird, dog, cat, fish, ball, book, nigh-night (sleep), star, bye (blow kisses), and point.  She is working on help, car and syringe (she needs to know how to ask for her favorite toy).  She has started putting two words together, usually with 'more,' and she has even signed 'more, eat, please.'  She is also getting more vocal and is really close to saying her first word.

Averi has passed several milestones this year, especially lately.  She can clap, sit, roll, get in and out of sit, stand assisted for several minutes, and has started doing an inchworm crawl where she moves forward with her feet until her hands get stuck underneath her.

She has also trademarked many tricks, including blowing tons of kisses, acting surprised, impersonating a lizard (tongue out and to the side), blinking, giving hugs, showing you how big she is, and squeezing her nose if she thinks you are stinky.

Averi smiles constantly, making it impossible to be truly sad when you are in her presence.  She is an awesome example of living life to the fullest and not letting the small things, or big things, get you down.

We are SO very proud of Averi and all that she is learning to do despite the many challenges she's been given.  Keep up the good work Averi, you are amazing!