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.

Ava's First Round of Chemo

Ava started her first round of chemotherapy on March 14th, 2012 which continued for 10 days.  She did really well and maintained a very positive spirit.  Ava was constantly making the nurses laugh with her new dance moves from watching Rio so many times and ended up being the talk of the ICS floor.  I figured chemo meant she would be sick and sleeping all the time so her amazing spirit was a pleasant surprise.

Ava had a couple of bad reactions to the platelet transfusions and unfortunately that meant adding antibiotics that turned her skin bright red.  She also struggled with being able to consume enough calories so she ended up having to get a feeding tube.  Of course after just one night with the feeding tube in, she pulled it out playing with a stethoscope of all things.  We put the feeding tube back in that night and then she puked it up the very next day and she was given the weekend to get her appetite back up.  I discovered how stressful it can be to try to get a 17 month old to eat and drink, this had never been an issue with Ava prior to her diagnosis.   I wanted to make sure she was eating enough so she could at least have freedom in her room from all the cords and feeding tube since she couldn't actually have freedom from her room due to her high risk of infection.  She ended up eating and drinking enough which was a huge relief for me.  I'm not sure I could handle putting that feeding tube back in!

The Feeding Tube and Stethoscope

The hardest part for me (other than finding out about the cancer) was when she started losing her hair.  It took a while for it to start falling out so I made sure I did her hair every day.  =)  When it finally started to fall out, it came out in chunks which was difficult to see.  We had her head shaved a couple of days after it started to fall out and I was pleasantly surprised to see how much I enjoyed her new look.

Ava's new haircut...she wore pearls for the occasion

Ava continued eating and drinking well as we continued to wait for her ANC and Monocytes to come up high enough to go home.  I chose to finally sleep at home a couple of nights to catch up on some much needed rest.  I called Justin on Sunday morning to tell him I'd be up as soon as the cheesy potatoes in the oven were done.  It was Easter Sunday so I wanted to have Easter dinner up at the hospital as a family.  Justin told me that I should leave the potatoes home since we would be eating dinner at home as a family that night.  After a month in the hospital, Ava's counts were high enough and we were finally able to go home.   That goes down in the books as the best Easter ever!

How it all started...

Ava had been sick for a few months with a cough and runny nose, pretty typical of a toddler in the middle of the winter.  We had taken her to the doctor several times but we were told it's just a viral thing and nothing to worry about.  Her cold turned into an ear infection and we were given antibiotics for it.  6 days later (3/8/12) the fever was still around so we took her back into the doctor where they changed her antibiotics and sent us home.  Around that same time we noticed that Ava had stopped walking, at first we thought she was lethargic from the fever and that she just didn't have enough energy to walk.  Through the weekend she still wasn't walking but was playing normally, just not walking.  I took her back to the doctor on Monday 3/12/12 where they thought maybe she had developed some sort of infection in her hip.  They weren't entirely sure and wanted us to head up to the ER to have some blood work and x-rays done.

The ER doctor was pretty nonchalant about it which was very frustrating.  He said that with a cold comes swelling and that most likely her muscles were swollen and it was painful for her to walk.  He said that the blood work I was requesting wouldn't really tell us anything other than if there was swelling in her joints.  I stressed to the doctor that we were sent here for blood work and x-rays and that was what I wanted.  I knew something was off, why would a toddler suddenly decide to stop walking when she's been running for 6 months?  After a couple of painful hours of waiting in the ER, x-rays were done and blood was drawn.  Shortly after Ava's x-rays were done the doctor came in with a very serious face (I just figured he was frustrated that nothing came back from the x-rays or blood work and he didn't have an answer for Ava not walking) and said "I'm sorry to tell you this but Ava has Cancer".  That was certainly the most shocking news I've ever had given to me.  I asked if the doctor was sure and he said that 61% of Ava's blood cells had blasts of cancer, so basically 61% of her blood was cancer.  It's one of those things you hear about happening but never actually expect to experience first hand.  Telling Justin was horrible, the phone didn't work in the ER, my cell didn't work there either so I had to FaceTime him to tell him the horrible news.

The next several hours were a whirlwind between oncologists, social workers, nurses, pediatricians, etc., all coming in to discuss what was next.  We found ourselves in the ICS unit of Primary Children's Medical Center a few hours later.  The next day Ava had a spinal tap done to see if the cancer had spread to her spine (luckily it had not), chemotherapy applied to the spinal fluid as a precaution, a sample of her bone marrow taken to determine the exact type of Leukemia and an echocardiogram done to determine if her heart was strong enough to begin chemotherapy.

On Wednesday Ava was officially diagnosed with Acute Myeloid Leukemia.