Round Three

We are on day 3 of 5 of Ava's 3rd round of chemotherapy. She's been doing ok but this round has been a little tougher for her than the rest so far. Since she is only doing 5 days of chemo this time around, the doses are significantly stronger and are pretty much taking a toll on her energy level. She's had a fever on and off for the last couple of days, she's been pretty nauseous, and has been sleeping quite a bit.

Ava still finds the time to play and argue with Addison when she's awake so her energy isn't completely gone. The girls had some fun with glow in the dark bracelets last night. There was a minor incident when Addison accidentally bit through a bracelet and her mouth glowed yellow for a minute. Apparently Justin did the same thing when he was little so it's not a sueprise that Addison did it too.

We only 2 more days of chemo for round 3 and hopefully Ava will get back to normal. I'm hoping for a very boring next 2-3 weeks while we wait for her counts to recover. Wish us luck!

Our Time Home

We were able to go home on Friday, May 11th, just in time for Mothers Day.  Ava's counts recovered in just 19 days from the start of chemo, the norm is 33, wow!  Ava's ANC was at .10 but they let us go home because they were confident it was on its way up.  They were right about that, by the time Monday arrived it was 1.2, that was a HUGE jump.

We had such a blast at home.  Justin flew home to surprise me for Mothers Day so the 4 us were able to spend it together as a family.  This was by far the best Mothers Day ever.  : )

Our time at home was pretty uneventful until Wednesday when Ava came down with a fever.  I blame the shoes I wore Tuesday night, they were the same shoes I wore the day Ava was diagnosed with Leukemia.

The Cursed Shoes (In case you were wondering)

Needless to say, those will be going back to Nordstrom since I've only worn them 2 times and bad things have happened each time they have been worn.  I took Ava to the hospital on Wednesday, they drew blood and gave her antibiotics.  I received a phone call at 6am on Thursday letting me know her blood culture grew something and that I needed to bring her in ASAP.  ASAP meant, right then and there, not an hour from then but I needed to wake her up and leave right then.  I was certainly nervous, oddly enough it wasn't because of the fever, I guess I knew the ridiculously strong antibiotics she was about to have would kick the infection.  I was more nervous that Justin had plans to come home Sunday for a week to spend time, just the four of us as a family and now that wasn't going to happen.  Fortunately Ava's oncologist was Attending that day and he let us go home that night after she had her 2 doses of Vancomycin, her regularly scheduled bone marrow aspirate and spinal tap, w/chemo.  It was a long day for Ava, but we were able to go home, yay!  The only stipulation was that she had to go home on vancomycin every 6 hours, until we go back for round 3 of chemo.  The Vancomycin has to be given with Ava being pre-medicated with Benedryl (manually pushed over 3 minutes) because she turns bright red when given the Vanco, not so fun.  Regardless, we were able to go home and spend time as a family for the next several days.  

We planted lots of flowers, played outside everyday, went to the park and went to the zoo. (Ava loved the elephants, apes and the carousel).  Ava definitely made up for lost time.  We also spent quite a bit of time in our trampoline that the girls received for Christmas.  Although it is more convenient in the box, we figured we may as well put it together and get some use out of it.  To be clear, when I say "we", I really mean me.  (You're welcome Justin).  Both girls absolutely love the trampoline and it turns out, the trampoline actually helped get the blood flowing for Ava's daily blood draws required due to the infection.  Ava also enjoyed having her sister read bedtime stories to her each night.

The last time home we didn't really do anything, I was worried something terrible would happen.  (Now I know only terrible things happen with those cute shoes so that won't be a problem much longer)  Ava's doctor told me to let her be a normal child at home, so I did and she had a blast.  

Round 3 of Chemo, here we come!  

    

       

Almost Done With Round 2 in the Hospital

Ava was so happy to see her Daddy on Friday, she couldn't get to him fast enough when he walked in the door.  After a fantastic weekend, Ava's counts have started to recover.  This is a trend, she spends time with Justin and her counts go up, the same thing happened during her last round of chemo.  She has 34 monocytes as of today, no ANC yet but hopefully we will wake up tomorrow to find her ANC is up and we get to go home!

She has been doing really well this time around, even better than I had expected.  She didn't have a reaction to her platelet transfusion and she only had to have one since she is now making her own platelets.  Ava hasn't had any fevers, so she hasn't had to have any antibiotics this time.  She's been drinking enough throughout the day so she hasn't had to be hooked up to fluids at night, which means that she has been sleeping better.  What can I say...we've been lucky!

Ava had a great visit with her big sister Addison yesterday.  Addison thinks she knows so much more than Ava (and everyone else) and since most of Ava's books are primarily pictures, she feels she can read the stories without mom or dad's help.  Ava really enjoyed the positive (not fighting over toys or most recently, suitcases) attention from Addison too.

Today Ava made a new friend, her name is Mary Kay and she is a Pet Therapist here at Primary Children's Medical Center.  Ava played with Mary Kay while KSL News video taped her for an upcoming telethon the ICS Team is putting on to raise money and awareness for Cancer Research.  She was quite a ham for the team filming her...maybe she will have a future in front of the camera one day.  =)

Thank you to everyone for the continued positive thoughts and prayers...they are definitely helping!  We will keep you posted on Ava's progress.

XOXO

Now We Wait...

Well...round 2 of chemo is officially over, she received her last dose of chemo on Saturday morning.  This round was interesting, she didn't really have any complications with the chemo itself but she sure did struggle with that darn Broviac Line!

Not only did she break her line the first Saturday here, then she pulled on it enough for it to leak all over her stomach.  It took quite a team to get that line fixed for the 2nd time.

She is officially free from the wires so hopefully there aren't anymore incidents...

Although Ava is done with round 2 of chemo, we still have to wait in the hospital for about 3+ more weeks until we get to go home.  We have to wait for her ANC to drop down to 0, stay there for a while and then go back up to a level where she is healthy enough to fight of infection.  This typically takes roughly 33 days from the start of chemo.  This is the part that we want to be very boring...if it's boring, that means she hasn't contracted any sort of infections that could be very dangerous to her health.

Since Ava's ANC is below 500, she can't leave the room.  From here on out, she has to stay in this room pretty much until we go home, she's not a huge fan of that.  Her newest hobby is staring out her window watching people walk by, since most of the people up here are nurses, she pretty much has them all wrapped around her little finger...

After her 1st round of chemo, Ava's counts recovered fairly quickly in just 24 days.  I'm hoping that she has a similar count recovery this time around.  I can't wait for Ava, Addison, Justin and I to just hang out at home as a family for 7-10 days before she begins round 3 of chemo.  

Please send lots of positive vibes/thoughts our way...the sooner we go home, the sooner we start rounds 3 and 4 of chemo and hopefully ring that bell to celebrate Ava's final round of chemo!

Chemo Round 2

Ava started her second round of chemo on Friday. It's such a difference being admitted as a healthy patient than a sick patient. She hasn't been sick like she was at the beginning last time. I suspect her nausea last time was from the anesthesia she was given when having her Broviac Line put in.

We did have a slight hiccup when Ava broke her Broviac Line on Saturday. Fortunately she broke it and didn't pull it out! She has pretty much been herself, which is how she broke her line, she was too fast for the volunteer and the line just snapped.

I have to say that I am continually impressed by Ava's positive attitude. Believe me, she can have a bad attitude, even at 18 months of age. :) Listening to the nurses, it's funny to hear how they like working with kids over adults, because kids are easier. Kids just adjust to their current circumstances, they don't really complain, they just deal with it. Ava is a really great example of this. I figured Ava would flip out when she saw the hospital room after being home for 10 days but she didn't. She was happy to see the nurses and all of her belongings that have been boxed up since we left the hospital on Easter.

Ava is slowly losing her appetite which worries me because I know a feeding tube is in our near future. Hopefully she will have enough calories to squeak by and once chemo is over on Friday, her appetite will come back. I'm keeping my fingers crossed on that one.

Here is a pic of Addison checking Ava's heart. I sure do have 2 amazing girls!

XOXO

AMAZING News!!

Today we found out the results of Ava's Bone Marrow test.  It turns out that Ava is in REMISSION and does NOT need a bone marrow transplant!  I can't tell you how much of a relief this is for us.  I feel like I can finally breathe.  It's that kind of breath when you finally get to the top of a mountain when hiking and your heart slows down and you can breath that fresh, clean, perfect air...that's what this is!  I've known Ava was strong, especially when she started dancing to her bubble blowing dancing flower at the hospital in the middle of her chemo treatment when most kids would be in bed.  She is such an amazing little person! 

We check back into the hospital tomorrow and will start her 2nd round of chemotherapy.  Fortunately the drugs this round are the exact same as she had last time but this time they will run over 8 days instead of 10.  We will start our day with an echocardiogram tomorrow and then start chemo at 6pm.  

Ava will need to have 3 more rounds of chemo....so basically 3 more months give or take in the hospital. with 7-10 days at home between each treatment.

I'm so happy, today is the best day!

First Check-Up

Ava had her first check up since she was sent home a week ago and it went really well. Her Oncologist is really happy with her progress. He even said that she is the healthiest and happiest AML kid he's ever seen...Ava 1, Cancer 0.

She had 2 procedures done today. The first is a Spinal Tap where they go in, check the spinal fluid for cancer and administer chemo to the area. The second procedure is a Bone Marrow Biopsy. During this procedure they removed some of her bone marrow to determine whether or not she is in remission. If it is determined that she is not in remission, meaning the cancer is still in her bone marrow, then she will need to have a bone marrow transplant in a couple of months.

If they determine that she is in remission then, we will continue with her scheduled round of chemotherapy and we will starting the 2nd round of chemo this Friday.

My fingers are crossed that she does not need the transplant.