No update is a good update? :)

Two week update on little Blu :-)  I talked to my 93 year old grandma and she said she wakes up every day and checks the internet for an update and it made me realize how many people anticipate these updates on her.  Sorry for lagging!  This one doesn't have a ton of new info so read or skip it :-) but overall she is doing well. :-)  I love you grandma!!


Blu really is doing great! We just completed week 12 of 22 and our second visit WITHOUT chemo. We have really been looking forward to this part of the schedule and were hoping that the break would be giving her little body a much needed break.  It has!!  This little breather has been so welcomed.  She still has to go in for scans and labs each Friday so our routine hasn't really changed, just the immediate outcome.  Last week we went for labs and her ANC was still high at 1,400 and today we also went for labs and she is still going strong.

Last week was Veterans Day (and my grandma Aleen's 93rd bday!) and since no school was taking place, Jet got to come with us to see what all the Friday events were about.  Over breakfast Liv broke it down for Jet and explained all that would take place from the check in, the waiting, the port access, labs drawn, more waiting, etc.  I think explaining it to her big bro helped her process the all that the day had in store for her.

We had a yummy FamBam breakfast and then off we went to Rady's.  Port access went smooth (we had the same nurse as last time and I think Jet being there helped her anxiety) we waited for lab results, played some cards and we were out!

FamBam Breakfast

Liv had to keep her mask on for the duration.

Port access never fun but quick and she did GREAT!

Jet had soccer practice and the husband of our team manager, Marci, got some really good photos of the team- Go TFA!! He is loving his team and we are so thrilled to be involved in such a great healthy group with awesome kids and super cool parents as well as the best Coach you could ask for! Marci's husband, Walker, takes all the photos and does such a good job! Look at these handsome soccer studs!!

Our neighbors that moved away came back for the day/night and we ended up with half a dozen kids over and us parents sat around watching the kids have fun.  Liv of course schooled most everyone in cards and the boys scooted up and down the street till after dark.  It was so nice having Lisa, Vivian and Maxwell back in the hood for the day and my good friend Kim, her kids and hubby visited as well along with Soccer friends Marcie and family.  It was a really nice day and night and everyone had fun.  I know how much Liv misses the social aspect of things when she isn't feeling well and I think she had the most fun of all.  My focus is always on Liv and making sure she rests, gets to bed early and sleeps as late as her little body needs.  We took it super easy on Saturday and our half of Sunday.

Our garage "play room" is often the meeting spot for the neighbor kids. Our garage is carpeted and all the crafts and toys and art table is out there. We open the garage door and everyone seems to end up at our house- which we love.  We always order pizza for everyone and we like having the kids over. I've never been the playdate mom or send my kids to others for the day or night but we welcome everyone over to our house. This is how I grew up and I love that all the kids feel welcome here. They all know where the snacks are, the game and toys are and I like that they all feel loved and safe here.

Vivian, Stella and Liv getting down on some Karaoke.

We got Liv back Tuesday and I could tell she was wiped out. Just dragging.  Tuesday eve she had the sniffles and a little cough and she woke up a little worse on Wednesday.  I made the call and kept her home from school where she rested all day watching movies while I tried to keep her fed with healthy snacks and lots of water.  The thing I notice the most is her fatigue.  She just gets worn out quickly.  If I don't stay on top of feeding her I don't think she would eat at all.  She is tiny!  She is down a solid 10 lbs since all this started but you can't force her to eat either.  The doctors say when she is hungry try to stuff her full because when she doesn't feel great, its really hard to keep the weight on.  I am doing my best but she is a picky eater to begin with.  We still have almost 3 months to go so am thinking of new things to feed her.  Her 'foot drop' has been so so, not terrible but definitely progressing.  I hope we speed through the rest of this without a bunch more side effects and I'm just thankful nothing has been to bad so far.  Thinking Positive!


She opens a gift from her class each week before Chemo. She loved this gift and card from Brennan and now is obsessed with Orbeez :-) (moms look it up if you haven't yet!)

She loves opening new fun stuff her class gave her.  I forget how bald she is sometimes because she always has a hat on.  She still isn't ready to shave her little wispy hairs that are left.  (Which means Max has kept his as well... although I think he's itching just to take it off anyway LOL!)



Our little family overall is doing well.  Max's real estate biz is doing well (send clients his way!- seriously!) :-) and both kids are doing REALLY well in school.  Progress reports were awesome!  I am trying to manage the kids, work, new ventures, hospital stuff and the usual.  I definitely need to take better care of myself and find ways to ease the stress I seem to wake up and go to bed with but I'm trying.  I keep meaning to work out or take time for me but it isn't happening yet.  It will. Max  is so supportive but I always seem to find other things that need to get done.  Maybe I am simply making excuses?

There is so much love in this little FamBam.  I feel so lucky the kids and Max and myself are all blessed with each other and all the love and support.  I know I say this in every post but its true. When something 'bad' happens it makes you look around and realize how lucky and blessed we all are.  The kids seem to have this need to always be on Max.  Either laying on him or on his back or in his arms,  he is like this kid magnet and I love seeing them always hanging on him.  We read at night and one of the kids always has to be on him.  Liv and I actually fight over who gets the 'special spot' lol which is right on his chest snuggled up close.  I love the love they have for him.  Its been 4 years so I shouldn't be surprised and its still awesome. :-)

Liv was reading funny quotes to us. I love this time together...

Hey you gonna go pee?- ok let's all jump on your back!!

He never gets a break hahahahahah!

Table for two adults and one baby monkey please....

Our one evening we don't have Liv for a few hours- Jet needs focussed time too and we had a great dinner out :-) These two melt me..


Today we also just had labs and since they don't want to access her port for just labs they went through her vein in her arm.  It's much safer because if the port gets infected its a surgery to remove and replace... no thanks!  We knew the arm poke was coming so used the numbing creme and while I thought this would go well and be super easy she melted and cried and cried but it took no time at all and we were done.  I think because she is used to certain things, when a change occurs and its not the usual, she gets anxiety over it.  She held on to DaddyMax and said after it wasn't so bad. We skipped out and are looking forward to The Trolls Movie later today :-)

DaddyMax distracting her as the nurse gets the needle ready

This little Bee buzzes and supposed to take any pain away so she doesn't feel the poke. It worked.. She didn't feel anything.

She was more upset by the band that hugs her arm than the draw, she cried huge alligator tears but really did quite well.

A few things that were super cool- my longtime friend and Jet's godmother, Auntie Lori, sent her favorite artist, Deborah Passwaters our wedding photo and had this amazing creation done for us.  I am in love with it!!! We have it hanging in our kitchen and will forever cherish it- what a cool, thoughtful gift!! I mean I am still speechless I love it so much!

I have mentioned before growing up in Key West. I actually only spent 4 years there but the connections made and hearts of people in KW are priceless. Its a 3 by 4 mile island so you really do know everyone...and their kids...and their parents....and their grandparents.... and its so small there is this super close-knit connection.  I continue to be amazed at little things that arrive for our family. My longtime friend Jennifer White and Krishna Lowe had her class make a "Get Whale Soon" sign for Liv with all the kids hand prints as little whales.  Liv LOVED it and it totally made her day- and they sent Legos for Jet too. Thanks guys- so much love!!

"Get Whale Soon!"

Next week is Thanksgiving and I am nervous as we have her a little less than normal, she may get worn out right before her big dose next Friday.  And, there isn't anything I can do about it so I'm just letting things be the way they will be.  Max has me reading several books on meditation and peace and I think they are helping... or at least starting to... Ommmmmm :)


Her big dose will be next week on the 25th- the day after Thanksgiving. I am hoping it will go well but will keep everyone updated. :-)

Thank you for loving our sweet little Livy Blu.

FamBam Update

Happy to report Liv Blu is doing well  overall with a few side effects (which I'll address later) however the last two weeks have been pretty good. YAY!!!!


Max's sister, Erica (we call her OG because she is the original "Gee") came to visit and brought her  total rock star daughter, Cuz Elle!  This is probably the greatest thing for Jet and Liv. They LOVE having Max's family come visit.  While we are the FamBam, the extended family is the FamBamily and we all love being together.  Erica is a total bad ass.  She comes in, helps out, spoils the kids, makes me feel like I am doing it ALL right even when I feel like I am doing it ALL wrong and loves her brother more than life itself.  On top of that Cuz Elle is the coolest 13 year old ever.... Liv and Jet just adore her and she goes out of her way to connect with them both.  We were lucky enough to rent a house off of AirBNB just two doors down from us so the kids could wake up and run next door!  We never had to coordinate anything- it was so nice having them almost right next door :)  We watched movies and they came to Liv's big chemo apt and we all did breakfasts and just hung out. It was such a treat!

Support and cards pre-chemo.

Movie night :-)

Liv's big chemo went surprisingly well!! Last time we had a double dose she threw up all weekend however this time, although tired and had an upset tummy, she actually never got sick (yay!!) I'm thinking it was OG and Elle in town :-) She is tired and the chemo is accumulating in her system but she isn't violently sick!

Her port access which is usually the worst part, went REALLY well. We had a new nurse and at first I was bummed that our usual rock star nurses weren't there but this gal (Amanda) did it so quick little Blu said she didn't even feel it (I mean what more could I ask for?!?!?)  The anticipation was still stressful and there were some tears shed but pain wise, a total breeze!   Cuz Elle played games with Liv and before knew it, the 5 hours passed and we were back home.

Liv and Jet both had fun at the school Halloween parade. Jet went with Messi Soccer Stud and Liv was a vampire witch. They both had a blast.

Liv still isn't ready to shave her head. She has some long blond strongs (what she calls her few long wispie hairs she still has) and with a hat on, it looks like she has some hair left. She has been blessed with some fun hats made for her- Stephanie and Randy sent four adorable hats that Steph's mom Betty made which she loves!!!!! Shelly, from Noah's Bark- the rescue group we adopted Ringo from, sent this suuuuuuper cute kitty one and Marylin made a soft pink one. She loves them all and thankful to have several to choose from each morning!!!!!

She loves the little ruffle on this one :-) Thank you Betty!!!

CAN YOU BELIEVE HOW AWESOME THESE ARE??????


Liv's class has been SO amazing.  She technically isn't even registered in school.  We were told she would have to be home schooled but up till now, aside from missing a week due to being back in the hospital, Liv has been able to go half days all year.  This past week her class gave her the most precious gift ever.  All of the kids had a part in creating a blanket for her.  Each kid tied knots to create this incredible blanket that I'm certain she will cherish forever.  Jenna, Alison's mom, put so much energy and love and made a little album of all the kids with notes from each and a photo of each kid from the class holding up the blanket with her teacher, Mrs. Wallace.  I had no clue this was going on and just started bawling when they presented it to her.  I continue to be amazed at the love for Liv and how kind people can be.  Julie sewed a really soft white inside to the quilt and Liv has been using it during chemo and at night.  This basket full of goodies... I can't even get into all the thoughtful stuff from kids in her class.  We cherish the handwritten notes and will save them FOREVER. (As I write this I am bummed I don't have a photo of the amazing book her class (Jenna) made for her)  I cried looking through it all.  Each child wrote her a note.

All her class mates helped make this for her!!


We had Liv's parent teacher conference today and as usual the little smart butt is doing great. I was touched by this report she did on her favorite people coming to visit..... She loves having a big family and thanks to DaddyMax it is huge! And she and Jet love that with our wedding a few weeks backs its now legit and they are legally actual cousins:-)

Liv continues to be her spunky sassy self. She is playing a ton of cards with anyone who dares to play against her.  Rummy, Gin, Blackjack, Uno, Browns Bridge.... Max and I are sure she will end up in Vegas at some point.  Her little brain works so well and she just gets it.  She gets the rules, the strategies, which cards to play when, and it really is quite amazing.

Blu, Cuz Elle, Jet and OG playing browns bridge.

Liv also continues to be as sweet as can be. She brings notes like this daily. This one was actually 'mailed' meaning she left it on the front door step, rang the bell and then ran into the garage so we didn't see her.  This type of thing melts my heart. I think she really gets how lucky she is and how loved she is....(although she said my smile is contagious so I have to assume she ripped this off another card she saw hahahhahah)

We have noticed a few side effects that, while aren't super bad yet, put fear in my mommy heart.  She seems to ache a little more.  She complains of her arm hurting although there is nothing there visibly and her eyes seem to droop quite a bit.  The worst, in my opinion, is her feet don't work quite as well. They said she might get "foot drag" which is where she just can't pick up her feet all the way so she ends up tripping and falling more.  We have noticed this a little and given we are almost at the half way point, can't be surprised its happening but effffff if it doesn't wreck me.  I am thankful nothing is too severe yet and thinking positive the next 12 weeks will go by quickly. She is one amazing little Blu and we thank everyone for sending energy and love and positive vibes her way.

 This is the progression over 8 weeks.

 Larry her faithful Lobster she takes everywhere (thank you Arna) and her throw up bucket is always close by.

Day of her big chemo- she did so well!!


Oh- forgot to mention..... Liv would really struggle with the smells of the meds and cleansers they use during access however we were introduced to scented lip glosses that they rub onto her mask.  It made such a huge impact that last week we donated our own little box with scented lip glosses hand picked by Liv.  When we got to chemo our favorite nurse, Ellie, said there was a little boy who really was upset by the smells so they brought out Liv's box and he was so happy to have all the options. This is a photo of Liv with him. We were super happy she was able to help another kid :-)  His mom said Liv's box saved the day and we were all so happy!

We are going to continue to find ways to help others.  We have donated a few hats that didn't fit Liv to other bald kids, and a few head bands that our friend Joy gave to Liv didn't fit so we took them with us and found two younger kids who were just beside themselves to get a gift from Liv during chemo. That is our new goal- to help Liv give to others who may not have the support system that we have been SO blessed to have.

One of my favorite photos taken just this morning. Liv didn't feel great last night and climbed in bed as she does each morning but quickly fell asleep in her favorite spot. They snoozed this way for a long time. THIS makes my heart swell up and think of all the love and positive things in our lives.

Thank you everyone for sending love and energy. I promise to pay it all back 10 fold. xoxoxo
Carlie

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!