Downs and Ups... Mostly Ups :)

Playing catch up on Liv Blu...... after being in the hospital for 5 days, we got her home and she recovered.  Her ANC (the number which tells us how well her immune system is working.  Above 500 is good... below is not so good) had gone from 1200 two cycles ago, which then dropped to 700 the next cycle, only to plummet to 90 (omg) when we were finally admitted.  The ANC continued to drop to 35, ultimately bottoming out at 16.  We could not believe it.

She was quarantined to our house and anyone in contact with her had to wear a mask.  As she started feeling better, she would take her sit-down scooter down the block but she had to were a mask.   Obviously this meant no school and after a few days, the home school teacher came to keep her up to date with all of her school stuffs.

Night before Chemo chilling :-)

Thursday should have been a 2 hour appointment however it ended up being a 5 hour day.  Port access, (never fun), waiting, waiting, meet with her doc (who is sort of subbing in while her normal Oncologist is out on maternity leave), waiting for results, then finally the decision to administer the chemo was made once we got the results of the blood work/ANC.... 1,700!!

While we waited Lego Land showed up with all sorts of legos and fun activities- this really made this day much more fun! They interviewed Liv and she got to take some fun photos and was even on TV!

The meds were quick and painless and we were out. She felt surprisingly good! She had a little headache and upset tummy but really, given she had slept for 4 days straight, she rebounded really quickly and it was a great weekend.

The boys always love to goof around and make Liv laugh.

Jet sporting Liv's wig cap- which she hates and hasn't worn yet... 

DaddyMax also got in on the fun :-)

So, in other news..... we got married.  BOOM!  Max and I have been engaged for a year and a half, together almost four years and been calling each other husband and wife since day one....it's just easy and always felt right. In our hearts the commitment has been there forever however, for the kids, they always wanted it 'legal'.  With Liv's hair almost gone we decided and within 48 hours eloped. :-)

It was PERFECT.  And I do mean PERFECT.  We will have our massive, non traditional party next year here in SD but this was meant to be and it could not have gone better and easier and more simpler. Our amazing friend, Frank, was our witness/killer photographer and our long long time friend, Sonia, was our officiant.  There is literally not enough thanks to go around for these two when a day before we decided to make this happen and they both, without hesitation, said "heck yes!"

The kids had a blast!  Liv got 'her' wedding before all her hair fell out - well, it sort of is pretty much gone.  Another HUGE thank you goes out to Jen H for putting together the most perfect white, soft hat for her... within 6 hours!!  It made her feel beautiful and safe during a time when she is so self-conscious.  I will love you forever for this gift!!!!  We ate chicken strips for our fancy catering dish along with a glass of champagne and it was perfect... well, for our crazy little FamBam anyway!  Just us and the kids..

"You're OFFICIALLY my Daddy Max!"

Grandma stepped in and took the kids for the night so that me and my new husband went out for a yummy dinner and then, being the softies we are, got up early on Sunday so that we could be at grandmas by 8 am to pick up our babies again. We are such suckers for these kids!!

Liv felt good enough to hit up school for half-days this week.  Tomorrow is chemo and sadly its the Big Dose.  This is the one that typically makes her sick and 7-10 days after her ANC count will be at it's lowest before rebounding (assuming she doesn't get have another adverse reaction) so she basically goes back to almost quarantine mode.  The Dactinomycin, which her liver could not tolerate and put us in the hospital, will be replaced with something new.  I am worried about the different side effects this new drug will have but I guess we'll will just ride it out and wait... again.  I constantly have to remember that I am not the driver of this train and have to let it go and be a passenger.... but as Max says, hour by hour.  We're all still adjusting to this new-normal... I found this note in her notebook.  I guess she was supposed to write a story in school and this was hers...

Luckily her teacher, the amazing Mrs. Wallace, bends over backwards to allow her to come and go to school when she feels well.  The principal, Mrs. Tripi, checks in to offer her support to Liv.  Last week we had a deviation in the Chemo schedule so we were lucky enough to hit up picture day last Friday.

Before heading off to school, Liv realized she looked different so she grabbed one of her ultra soft hats (again thank you, Jen!) and we rushed out to make it to assembly.  Because Chemo has been on each Friday, this was the first assembly Liv had been able to attend.  It was a special time for Liv because the whole school gathers together to hear announcement and sing patriotic songs.

However, my Mommy tears started pouring out of my eyes when at the pledge they announced, "Please remove your hats."  This being Liv's first assembly since starting Chemo and all the hair loss she didn't really know what to do.  She sheepishly looked at me and DaddyMax and  then slid her hat off.  Her nearly bald head brought tears to both of our eyes.  Luckily all the kids' attention was on the flag and as soon as the pledge was over, she quickly slipped her hat back on.  I could feel her pain and uncertainty and it BROKE my heart.  I secretly cried on Max's chest so she couldn't see and quickly wiped my tears away when assembly was over.

We talked about it later and she was ok yet she really didn't want to talk too much about it.  Like most things in this experience, I feel like it was harder on us than it was for her because after assembly she grabbed hold of Daddy Max's hand and went right back to skipping through life :)

She got some fun cards and gifts this week.  Our friend Patrick is a teacher at another school and had his entire class write cards to Liv!  I mean... talk about sweet and thoughtful!  Liv read through each one and grasped that people all over :)  Adults and kids are sending her energy and love.  I can tell this means the world to her and really lifts her spirits when she is down.  Patrick (and Lucio), thank you for doing this!!!

My longest time friend in the world Lilo (Sara D. Close :-)  who I met in the 5th grade when my dad was stationed in Panama, sent Liv a "Chemo Duck" which is a little stuffed animal that is all ready for chemo himself, port and and tube attached (such a brilliant idea for kids!) and book "When Billy Went Bald" that goes over chemo and why you loose your hair and some ways to cope with it and even make it fun :)  Lilo- thank you for being so thoughtful!!!!

In the last blog post we mentioned Jet feeling a little left out...well thank you to those who stepped up and sent little things for him too..... (and I hope my message didn't sound like we were asking for gifts for him, just sharing that he felt left out)   Well he was definitely surprised when Max's sis and family sent Jet the absolute coolest boom box karaoke setup- this thing blast music, has a microphone and flashing lights with a strobe light.  It is beyond amazing and Jet has been busting out the beats non stop!!  Thank you Erica, Joe, Elle and Sophia!!!

Tomorrow is the 7th round of 22 so we'll be 1/3 of the way done(ish).  We'll find out tomorrow what the replacement drug will be going forward and most unsettling is that we'll find out what side effects come with it after she receives the treatment.  More of the unknown is ahead but with all of your love and support we will make it through :)  Thank you again to everyone!