Ring that Bell!!!

So just a few days after my last post, Ava started feeling better...in fact, she felt so much better that she was able to go home on Wednesday, yay!!!

For those of you that know Ava or have spent anytime with her, you know she is not even the least bit shy.  Maybe for about a minute of meeting someone new she is quiet but she warms up by 1 min 10 sec.  When we were asked to come out to the hallway to have a little celebration and ring the bell, Ava was all about it, especially since she had been locked up for 23 days.   As soon as everyone started cheering, she wouldn't even look at the crowd or ring the bell when it was time, so she needed a little bit of help.  =)

I've attached the video below, I hope you enjoy it as much as I do.

Ava had her final bone marrow test on Thursday, we will have the results back on Monday at which point they will officially diagnose her in remission!!  On Tuesday, Ava will get her broviac line out and after that heals, she can do absolutely anything she wants.  

To celebrate, we currently have a small celebration trip planned for Disneyland for mid-August.  The girls have appointments at the Bibbidi Bobbidi Boutique to get dressed up like princesses and spend a couple of days with their favorite Disney princesses.

Here is a picture of our family having fun at the zoo last weekend after Ava got out of the hospital.  

I will post the results as soon as we have them on Monday.

Please keep you fingers crossed this weekend and send positive vibes our way for the only option of remission on Monday. 

XOXO  

Final Round of Chemo!

Ava has been so amazing during this final round of chemo.  She even received a different "cocktail" of meds for this final round and she didn't even flinch while she was getting chemo, not that I should have expected anything less from her.  She was drinking like a champ that they even took her off of her fluids during the days of chemo since she was running around this room like she would in the backyard.  

The 4th of July was our 3rd holiday spent in the hospital but the girls got to watch the fireworks from our room that overlooks the valley,  we had a fantastic view!  We also constructed a fort this time around to keep the girls occupied (not sure why we didn't do this earlier), neither are even remotely interested in the toys we have here so we've had to get creative.  Ava absolutely loves the fort, probably because it feels like she is somewhere else other than this hospital room.  We even bought some arts and crafts to occupy their time here.  The girls were able to decorate bobble head puppies (kind of creepy) that you paint and bedazzle.  However, it turns out the paint was not washable so I probably should have put something on the floor to avoid the paint mess and maybe some aprons for the girls.  I wish I could say that was the first time we had a non-washable coloring product incident in the last few months but we've also had recent incidents with permanent markers and ink pads I assumed were washable.  NOTE TO SELF:  Make sure it says washable before purchasing!

We've been so fortunate the other 3 rounds of chemo as it relates to infections, nausea, etc.  The count recovery part of this round has been a bit tougher than the others.  Ava has been very nauseous since chemo ended so we have had to continue the anti-nausea meds for a lot longer than the other rounds.  She also wound up with a fever that started a couple of days ago.  When my girls get fevers, they are never low grade, always high, pain in the butt fevers that Tylenol doesn't have a chance against.  Ava's fevers have been as high as 104.4 which is causing her respiration's to be very short and quick, her heart rate is through the roof and her oxygen is too low at times that she has to get oxygen.  Her blood cultures haven't grown anything as of yet (today is day 3 of the fever so nothing will likely grow at this point)  resulting in the docs not being able to pinpoint exactly what is causing the infection.  She now has a bit of fluid in her lungs forcing a chest x-ray to be necessary because of all of the fluids she has been getting to help with her blood pressure, etc.  She is currently on 3 different antibiotics right now just to be sure all bases are covered.  I'm really hoping she wakes up tomorrow a sweaty mess which would be a result of her fever breaking and possibly with some counts to tell me we are moving in the right direction to ring that bell and say goodbye to chemo and the lengthy hospital stays.

I'm not confident that will happen but I'm sending lots of good vibes toward that crib tonight!

Please keep sending positive thoughts Ava's way.  I would hate for her to end up in the ICU because of  this darn infection that has no name.

I'll keep everyone posted on her progress.

XOXO

Fun Times at Home

Ava had another great couple of weeks at home.  We were able to go home on July 12th and we sure made the most of it this time around!

We started off our fun week hanging out with Justin on Wednesday since he had to leave first thing Thursday to go back to CA.  It was so great to be home all together as a family!

Unfortunately we couldn't spend Fathers Day with Justin so we went to the zoo with some good friends.  Ava had a blast seeing all the animals.

Ava's aunt and uncle came out to visit while we were home, Ava had a great time with Uncle Erik and Aunt Sasha!  Ava was able to go on her first hike.  She has been hiking many times but this was her first hike actually hiking and not being carried.  She had such a blast.   She is so independent and wanted to hike all by herself.

Hiking

When Meme and Papa Vince arrived, Ava took them to Bridal Veil Falls and had a blast playing in the water at the bottom of the falls.

We were really happy that Ava was able to spend Justin's birthday at home.  She figured out how to drive the barbie jeep herself and enjoyed playing on the slip n' slide.  I think she enjoyed drinking the water more than actually going down the slide.  I guess that is best since technically she's really not supposed to be doing anything water related other than a quick bath.  =)

We finished off our time home at the movie theatre seeing Brave.  I am still in amazement that both girls sat through the entire movie!  Addison still thinks that if she is mean to me, I'll turn into a bear.  I'm not sure that is a bad thing right now.  =)

Overall our time home was well spent and she ended the 2 weeks prepared to start her 4th and FINAL round of chemo!

Day 18, Round III

Ava had a great weekend visiting with Addison, whom she absolutely adores and missed terribly the last 2 weeks!  It was a great finish to the tough week she had.  This week is turning out pretty well and it's only Monday.  Ava had a red blood cell transfusion yesterday that gave her a tremendous amount of energy to start off the week!

Ava getting cozy during her red blood cell transfusion  

Ava's counts are moving in the right direction and she is now producing her own platelets so hopefully those darn bruises will start disappearing.  Ava has some monocytes already, she had 7 yesterday and 17 today.  Monocytes start to appear before her ANC which is a sign that her counts are recovering, and we are only on day #18.

Ava picked her own outfit today

I am so anxious for round 3 to be over, more so than I have been with the other 2 rounds.  I'm just ready to move onto round 4, I guess because at the end of it we get to ring the bell to celebrate Ava making it through 4 successful rounds of chemotherapy AND soon after the bell, the results will come in that say she is OFFICIALLY in REMISSION! 

I'm crossing my fingers in hopes that tomorrow brings more Monocytes and possibly some ANC.   

Please help if you can

A friend of mine is running the Disney Land Half Marathon over Labor Day Weekend to raise money for the Leukemia and Lymphoma Society, he will be running for Ava.  If any of you are able and willing to donate, I would appreciate it greatly. This is a fantastic organization that will some day find a cure for blood cancer.


Here is his page.
http://pages.teamintraining.org/dm/disneyh12/joleap




We hope that Ava is well enough by the race to be able to go cheer him on.

Is this week over yet?

This week has been a pretty tough one.  It started out normal, just a typical Monday in the hospital.  Played in the morning, central line dressing change, nap, played all afternoon, visited with a friend, Ava decided she wanted to floss her teeth and then she went to bed.

Then Tuesday came...Ava's central line broke or I guess I should say somehow sprung a leak.  I suspect it was because fluids were pushed to hard through the line that wasn't working as well and a hole popped through.  Regardless, it broke and our nurse called the IV team that "specializes" in repairs to fix it.  So this meant another dressing change to go along with it.  A dressing change is painful because they are tearing the bandage off of her already very sensitive skin and this was her 2nd dressing change in 2 days.  I was a little concerned during the repair that it was not being done properly since it did not mirror what was done during her last repair.  (i.e. put in a splint and wrapped in guaze and tape to dry for 4 hrs.  I was told that everyone does it a little differently)  After the repair was done, I rocked Ava to sleep for a nap and noticed there was blood all over her shirt.  I pulled up her shirt to find that blood was leaking through the repair out of her dressing and onto her shirt.  Makes me a little nervous to know that these people "specialize" in repairs.

BAD Repair!

So, I asked that the nurse that had repaired it properly the last time be the one to repair it this time.  So now we are on dressing change #3 in 2 days and her 2nd repair in just a couple of hours.  NOT FUN!

Wednesday started off with yet another dressing change now that the repair was done properly and dry, the repaired line needed to go under the bandage to prevent it from breaking again.  Wednesday also included a platelet transfusion.  Ava's platelets were very low because her bone marrow is not currently producing anything and won't until next week at the earliest.  For those of you that have read the blog before, you know that a platelet transfusion only occurs after Ava has been pre-medicated with Tylenol, Benedryl and Hydrocortisone since she has bad reactions to platelets.

Thursday arrived and her labs were a bit disappointing.  She did not get the bump that we are used to receiving from a platelet transfusion and Ava was practically where she started at the beginning of the day Wednesday, well slightly higher.  The nurses and doctors decided to let her have the day and that we would do another transfusion on Friday.  Ava had a normal morning of playing and then took a nap around noonish.  I stepped out to grab some lunch and when I got back after just 45 mins, she was up, she usually naps for 1.5-2hrs.  She woke up screaming so our nurse (who is so sweet) was in the room rocking Ava to see if she would go back to sleep.  A few minutes after I had arrived back to the room I was kissing her cute bald head and felt a huge bump.  The only thing I could think of was that she hit her head on the crib and that must be why she woke up screaming after only 45 mins of sleeping.

HUGE Bump!

I have never seen a bump this big before on Ava's head (or Addison's for that matter!), so I asked the nurse practitioner to come in.  Needless to say, Ava received another batch of platelets on Thursday afternoon!  Ava was breathing kind of funny on Thursday evening at bedtime.  It seemed like she was having a hard time catching her breath.  Vitals and lungs both were great so we just let her be with an oxygen and heart rate monitor on her overnight.

Friday is here and she's doing the weird breathing thing again.  So she's on vital checks every hour instead of every 4 hrs and we are waiting to see if she develops a fever today.  If not, we will have to do a virus test and may end up doing chest x-rays today as well.

Is this week over yet?!!

The bright spot of this week is that Justin and Addison come home today.

Ava's Big Debut!

Check out this music video created for a telethon being held for Primary Children's Medical Center in SLC.  They asked if Ava could be in the video, they though she'd be perfect for it.

Enjoy!

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.

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.