Week 8 of 22 Down... Week 9 Coming Up!

Sorry for lagging on updates!  There's definitely plenty to catch you up on :)  We went in to our October 14th appointment knowing that the docs were going to change her meds.  Her liver couldn't tolerate the Dactinomyacin which was one of the reasons she ended up back in the hospital a few weeks ago so we were switched to Doxirubicin.  It's considered a "heavier" type of chemo and, although it's a very common chemo for Wilms tumor patients, we were initially glad she didn't have to have because of the side effects.  This new chemo potentially brings heart issues down the line. Cardiomyopathy being the most common but doesn't show up till later in life. Cardiomyopathy is where the heart becomes thicker and harder which weakens it causing it unable to pump as much blood throughout the body. This sounds scary but we were told that the dose as well as the total amount she will be given it isn't much of a concern, however, they always end with... "we can't say for sure."  So, moving forward it will be the Doxirubicin and the Vinchristine.

Port access hasn't change.... she hates it.  Even still, she seemed fine leaving the hospital and joked around with DaddyMax while waiting for our car.

The standard nausea medicine, Zofran, hasn't seemed to really work for her so they added Ativan before the chemo.  The side effects kept her pretty lethargic and sleepy to the point she had trouble walking out of the hospital but once we got her home and into our bed she rested and slept.

Saturday came and she seemed ok aside from the standard complaint of stomach pain so I thought I would try to the Zofran again just so she wasn't so drugged and sleepy.  Her appetite was the best it had been since starting the chemo although this proved to be a double edged sword because she made it till about 1 o'clock in the morning when the vomit started.  It was intense!  I'm talking out of her mouth and nose and ALL OVER EVERYTHING.  It was all over her mattress next to ours, her pillows, her blankets, me, our comforter, the carpet, she even managed to get it all over the cords next to my bed (which took me forever to get clean later). Poor baby... she felt so awful. I got her to our bathroom and grabbed her vomit bucket.  I have the worlds worst gag reflex so as she sat on the toilet with her bucket while Max took over so I could avoid spewing everywhere.

We got her clean, put her in our bed and Max stripped her mattress and pillows and took it all down to the washer. (have I mentioned how amazing my husband is??)  We comforted baby girl and we all fell asleep.  How Jet slept through this I'll never know!  It hit again around 3am and again at 5am but thankfully she made it to the toilet both times.  The decision was made to go back to the Ativan  and she slept most of Sunday and by that evening she seemed much better.

Her favorite place when sick...In DaddyMax's arms.. He just holds her till she feels better..

Even with all of that going on we had Jet's birthday Saturday night while Liv stayed at our house with Grandma for a few hours  just playing cards and doing projects. (We're SO thankful my mom is awesome and lives a mile away)  We took Jet and most of his soccer team bowling.  They had an absolute BLAST.  We are really fortunate to have a great group of parents and kids on Jet's soccer team.  Kids and adults alike bowled, had treats and I think Jet enjoyed the focus on him for a few hours.  Can't believe my little baby is 10!!

Aunt Brandy came through with an epic piñata!

Wednesday was his actual birthday and my best friend Christy flew in from AZ while another Key West Alum, Amy, drove down from LA so that they could both spoiled the kids. Amy makes these most amazingly beautiful dream catchers which the kids loved and have hanging in their rooms.  Christy, in true Christy fashion, spoiled them both and bought a zillion balloons and cupcakes and gifts. I'm so thankful they both made such effort to be with me and our family. I love you both!! (Carrie you were there in spirit!)

I've been so touched by people that I haven't seen in decades.  My friend Paul, who I haven't seen since high school in Key West, has been exceptionally generous in supporting Liv's GoFundMe fundraiser.  Thank you Paul for your love and support!  Liv and Jet got a super cool and custom Key West surprise from another friend I haven't seen since high school.  Sibba- thank you for being so thoughtful and kind!  Another KW Conch sent Liv Blu some super soft outfits from the brand LuLaRoe- I had never heard of this before but now will be a loyal shopper- the softest, comfiest, cutest clothes ever and with her body being super sensitive, the material is so perfect for her. Thank you Donnie :-)  Key West has always held a special place in my heart and although I was there just under 5 years, it will always be my home.  The people are amazing and we stick together.

Never happy waking for chemo morning but having a fat cat like Raphie to jump on her bed certainly helps :-)

Sometimes I wake up, see her, and I don't recognize her.  She isn't ready to shave the rest of her hair and we are ok with that. Whatever works for her ;-)  She has a few moles on her head which I don't think she likes although to us she is just perfect.

Her friday chemo this past week was only the one med and overall she did REALLY well. I'm so thrilled. Some headaches and upset tummy but no throwing up. She's had a few really good days at school and is in good spirits.

When they access her port the smell makes her sick so they have these yummy smelling lip-glosses they let the kids put inside their masks to help.  Little Blu thought it would be nice if they had other flavors/scents so we bought some, made a special box to keep in the chemo clinic, and donated it.  Liv, with her big heart, was happy to do something nice for the other kids. :-)

This friday is another 'easy' dose so I am hoping she breezes through without feeling to bad. She is getting more tired and needs to rest a little more. They say chemo is accumulative so while she may look ok and not seem all that sick, her body is still processing the poison in her body and it's still affecting her cells.  We continue to make sure that she is eating enough and really, just chilling out when home.

Her amazing teacher Mrs. Wallace continues to send cards from the class. Liv isn't even registered in her class because technically she has homeschooling yet Mrs. Wallace continues to treat Liv like one of the kids to make her feel normal and a part of the class. She is amazing this is one of the main reasons I think Liv is doing so well. The social aspect and her love of learning is so key and getting to go half days when she feels well makes my mommy heart so happy and thankful.

A note from her good friend Elsa (who clearly loves Pandas) :-)

Thank you everyone for sending her love! I know I am forgetting people to thank... sorry!  We'll try to be better at keeping this thing updated.  Until next time I leave you with a quote from Liv today after we picked her up from school.  She got in the car with some hand written notes she had jotted down on some scratch paper with facts about venomous snakes.  One of the facts that she "found super interesting" was that scientists believe that some venoms could hold a cure for cancer.  Max, always encouraging her to be whatever she can dream, suggested that she may grow up to be one of the scientists to make this happen.  Her response was priceless; "Well  I know I don't like having cancer... I'm pretty sure nobody likes having cancer... so, I might as well try to cure it!"  God knows she's got a good shot at it!

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!

Mononucleasskick....

Well... we're home ;-)  After another whirlwind tour of blood draws and sleeping on the hospital floor... it turns out Liv Blu has Mono.  And cancer... but we already knew that :D (yes Max actually sleeps on the floor - they only 'allow' one parent but he won't leave her side so I sleep next to Blu and DaddyMax rocks the floor)

Max and I checked her in Sunday and went home Thursday late morning.  Another week down living hour by hour.

Her Absolute Neutrophil Count (a measure of the number of neutrophil granulocytes present in the blood) dropped  like a rock! Neutrophils are a type of white blood cell that fights against infection.  Two weeks ago, just before her double dose of chemo, her ANC was at 1,100.  That number dipped, expectedly, to 700 last Friday after her 5th round of Chemo.   By Monday, however, they had plummeted to 90 and were still dropping!  By the time we were discharged on Thursday they had fallen all the way down to 16.  We were told that this wasn't a surprise considering the impact of the chemotherapy combined with her little body fighting off the mono virus. Her hair continues to get thinner and thinner.

Ultimately her fever went away and they stopped the morphine as her stomach pains subsided and we got to come home late Thursday morning.  Technically we could have come home Wednesday but they painted a very clear picture of the return process should we leave and Liv spike another fever.  The last thing we wanted to do was come down off of Mt Cancer Sucks only to have to claw our way right back up to base camp the next day so we stayed an extra night just to be safe.  As of this update she's had her moments of discomfort but she's hanging in there.  No fever... yet.  Praying she will be ok.

She loved the visit from the therapy dog!

Mono can take a long time for the body to fully process and it can take months to recover fully.  So now we're walking the tightrope of her immune system being super susceptible to infection but at the same time we also don't want to quarantine her.  They call Mono the 'kissing' disease and as long as she's not swapping spit with anybody we should be good.  If she is swapping spit with somebody we have bigger problems on our hands :)

Liv, being the artist she is, got an award for a painting she completed during her first chemo visit.  Jet nicknamed her "Rainbow" when she was about 3 months old and to this day Rainbows are special.  Here is her masterpiece!:

She's had a few special treats and photos sent while we were in the hospital this week.  My longtime friend Devri sent photos of her dog with a note for Liv which made her so happy....

...and my girl Diana made this awesome post :-)

Auntie Wood let Blu name her latest hummingbird (Lily) and Stanley the fat cat sends Blu daily videos where he talks to her. She loves them!

Friends, Hunter, Alex, Jude & Tristan, The Ireland family (and friends!)  sent notes and cards and made Liv some super cool hats for when her hair finally goes.....So cute!! (I am terrible about thank you notes so please everyone know, your treats are appreciated!!)

Thank you to her teacher Mrs. Wallace who continues to send cards from the whole class which lift Liv's spirits immensely.

As you may remember, there was a bit of a Pumpkin Pie frenzy.  Well my friend from high school who I haven't seen in 20 years brought Liv the pumpkin pie she so desperately begged for but could only handle a single bite lol.  Totally worth it!

My mom continues to be a huge help walking the dogs, bringing clean clothes to the hosptial, shuttling Jet around... basically filling all the gaps.  Max's family sends a constant stream of notes, cards, love, and even the occasional FaceTime with the cousins which brighten Liv's day every time.

My girlfriends of... well we're so old that I'll just say forever... surprised me with a visit.  I don't know if I have ever been more surprised in my life!  Max said he and Liv had a surprise for me and that they needed to go out into the hall to prepare.  So he unplugged Liv's "octopus" (that's what we call her IV machine) and they left the room.  A few moments later the door opened and Liv said, "OK mom... I hope you're ready for your surprise!"  In walked my dear friends Cindy, Kurtney and Jen. My god... I was so shocked I just started bawling!!  They brought Liv treats and forced me to leave for a bite and some much needed girl time. I was torn because I don't ever want to leave Liv's side but also realized it really was needed.  Besides, Max basically kicked me out :)  I got to eat, cry, have a cold beer,  cry, talk with friends, cry, and let out some of my emotions that I didn't even know were inside.  Thank you girls!! And Max, damn you, but thank you at the same time :-)  (the gals brought super cool surprises for Blu - Jen, I love this hat and bracelet!! xoxo )

We got our boy Jet Possible (JP) back yesterday!  We've been missing him like something fierce.  He opened up to us tonight about the struggles he's having with all that is going on.  We're so proud that he uses his voice to communicate because we work really hard to make sure both kids know how important it is to share their feelings.  Jet opened up about how it's really hard to see Liv getting a zillion presents and cards.  We talked it out and he totally understands why she is getting all of this attention but it is still hard for him all the same.  He broke it down that at the end of the day he just wants to get some more attention too and we think that's totally fair.  So, if you've been thinking about sending something Liv's way... maybe throw a little love Jet's way instead.  Liv has been spoiled to the moon and back... and then halfway back to the moon again.... he could use some TLC too :)

Max and Jet had a boy time breakfast at Buddy's Diner (yes, that's two days in a row... go check it out!) and Damma watched Liv today so we could both hit up Jet's soccer game and gave him some extra attention and love..

Finally, and probably the most positive thing we could have asked for... a schedule change has taken place and Liv will be home before, during and after Chemo till Chemo ends. Whether that is 6months or a year, she gets to be home and so much stress has been removed for her.  My mommy heart is ecstatic!  And so is Max's DaddyMax heart :) This is the moment we told her about the change...

Max and I have come to the realization that Blu will be in our room for the foreseeable future. I want one of those 'family beds' you see on Etsy!!! (someone make me one please!!!!!) We just can't not have her next to us and while she and Jet usually sleep on their mattress toppers next to us when we have them, Blu has made her way into the bed the last two nights.  I don't think she has plans to leave and even if I insisted, Max won't let her out of his sight.  So, here she is and where she will be for the next 6 months at least. :-)

Sleeping is the best medicine for her right now and thankfully she is getting plenty of it.  We've been able to reinstate the old baby monitor so that we can keep an eye on the Little Bit (thanks Katie :) while we get work done like this update....

So for now we are just healing until next Thursday when we go in for Chemo session #6 of 21.  The fight continues!