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.