Saturday, July 28, 2012

Ring that Bell!!!

So just a few days after my last post, Ava started feeling 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. 


Friday, July 13, 2012

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.


Thursday, July 5, 2012

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.

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!

Monday, June 11, 2012

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.   

Saturday, June 9, 2012

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.

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

Friday, June 8, 2012

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.

Thursday, May 31, 2012

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.