Happy New Year!

Happy Holidays Everyone 😀

Catching up from Liv's last infusion and the holidays. We wanted to thank everyone who sent good wishes and holiday cards and treats for Liv Blu and Jet. It has been a very blessed holiday indeed. (This is kinda pieced together from the last few weeks so bear with me:)

Handsome Jet!! 10years old. 4th grade.

Liv Blu 6yrs. 1st grade.

Liv had her biggest dose on December 16th. The previous two weeks she had a break over which time her little body built itself back up so she was ready for the Chemo. She had two good weeks (half days) at school and had a lot of time with her friends and felt pretty good overall.  Her class is doing lots of projects and she has enjoyed getting to take part in everything. It is soooo good for her being the little social butterfly that she is.

NO tears at port access- our girl is becoming a champ!!

The meds kicked in and someone was loopy and happy!

During her latest dose Santa came to Rady's Children's Hospital and for some reason, this made me bawl like a baby.  DaddyMax was sitting with her while I went to the bathroom and when I came back, he was carrying her out to see Santa.  They left our clinic room in a bit of a haste to catch the Big Man that she had forgotten her hat so Max ran back for it as she didn't want Santa to see her bald (which seems odd given all the kids are bald but it was important to her so of course, Max ran to grab it).  They've started to give her meds before the Chemo to head off any nausea and it is strong to say the least...so sometimes she is super loopy and happy and other times, she is sort of unaware of everything and I think this was one of those times where she forgot she didn't have her hat on and once she did, needed that comfort. She definitely can't walk once the med is given so Max carries her from that point on.

When we arrived at the room where Santa was set up there was a lady who saw Blu and came up to her with this super soft, hypo allergenic blanket and gave it to Liv.  It was a one-of-a-kind blanket that had images of Paris all over it, specifically the Eiffel Tower.  Liv melted because unbeknownst to the woman our good friend, Danielle, has been teaching Liv basic French so needless to say, she loved it immediately.  When we explained the sentiment to the woman who chose the blanket she immediately got tears in her eyes.  Now, I'm not sure if I've gotten used to people being around Liv in the Cancer ward or built up a tough skin having seen all that we have during our time in Oncology but, this woman who was so taken by Liv, just about made me come undone! I got tears in my eyes, thanked her and as Max carried her off, back to her room, I turned around and hugged this woman for like 5 minutes with tears streaming down my face.  I just held on to her and thanked her over and over for being so kind.  Another woman who was volunteering also hugged me and cried. So, there I was with two total strangers just sobbing. They must see this time and time again and have empathy?  Or maybe each kid touches their hearts differently but whatever it was, it was an unexpected moment for me... one I won't soon forget.  I think I forget sometimes, because all of this now our new "norm", that our baby girl really is going through SO much. She is SO tough and handles it so well that I've just gotten used to it at times.  It's such a reflection of her unbelievable strength and positivity :)

We got little Blu home and she seemed ok.  She wasn't sick but was definitely loopy from the meds that keep her from actually getting sick. Once we got her home, Max went to pick up from school while I got her settled in our bed.  After I got her all cozy I went downstairs to get her snacks and out of no where I hear thump, thud, thump!!  Then...... "whaaaaaaaa!!! whaaaaaa!!!"  I raced upstairs to see Liv, out of bed, and on the ground.  We literally have a baby monitor on her and, believe it or not, a walkie talkie in case while I am making her food she needs something.  The little butt-butt doesn't realize she can't walk even though I tell her to stay in bed!  All she would say is "I fell! I want my DaddyMax!"  I got her back into bed and although she wasn't hurt she was sobbing.  I immediately called Max and he was on his way home with Jet.  Although I had finally been able to get her calm, when Max walked in and she saw him she started just started bawling all over again and so he crawled into bed and held her until she felt better. This is one of my favorite photos ever. It is so raw and so real and so heartbreaking because she is really worn down here, so close to being a month or so out of chemo but at the same time, her little body is at its weakest having just been infused with all that poison they pump into her.  I think they stayed just like this for 45 min at least.  Thank you Universe for giving me this man who has such patience and the biggest heart ever.  He would walk through heaven and hell for his family.

I hate Cancer.  My precious baby girl, so strong, so sweet, so amazing and this disease is awful.  First the Cancer and tumor and surgery and now the poison they pump from her heart to every area of her body to insure it doesn't come back.  To see her not able to walk, to see her sick, to see her weak and tripping because she can't pick her feet up properly.... it all makes me come undone at times with sadness and outright anger.

Sometimes, as a mom, I don't realize why I am emotional or extra short or super happy.  I end up feeling all ranges of emotions and I'm starting to understand that it comes from how well (or not) Liv is doing on a day-to-day basis.  So much of my life revolves around whats going on with her.  I have a hard time separating out my life from hers.  It all revolves around Liv Blu.  We are really lucky that, overall, she is doing great. I mean, some kids are not doing so well and Liv, she really is hanging tough. Yes she has pain in her arms and hands (neuropathy, especially in her finger tips so needs help with tasks) and her feet don't quite work the same but overall she is doing OK.  Foot drag is where she can't pick up her feet enough so they tend to drag or drop.  Whats sad (or amazing) is she realizes this and so makes extra effort to pick her feet up higher. She kind of looks like one of those horses with the really high feet or maybe a scuba diver walking with flippers on.  Its awkward and she knows it but she is doing her best. She still trips a lot and falls and cries but overall, these are small side effects given what could be going on.  Some days she seems totally normal and then others you can tell what she is going through is taking its toll.

A few days later, her counts were still good and we got approval from her doc to head to Idyllwild for a few days.  Being so close to San Diego we knew if she didn't feel well or was fevered we could zip home.  I knew the fresh mountain air would do her good and all of us really wanted a FamBam getaway given the chaos of the last 5 months.  We rented a little cabin in the woods less than half a mile from town. The air was crisp and cool, the cabin cozy and we basically did nothing except puzzles, eat, sleep, play games, watch movies and read.

We all got to relax.  We walked into town and of course baby girl ends up in her favorite spot, on Max's shoulders lol. I personally don't think she was tired but Max gives in to her anyway :-) Ringo loves running around chasing squirrels and we woke to snow on the ground which was fun.

My favorite part was we saw a sign for an animal rescue.....welp, I had to visit!  So we all went and got a super cool tour of Living Free Animal Sanctuary.  We saw the dogs and then got to pet all the meow meows!!  I've volunteered quite a bit in the past at shelters and gotta say, this place was top notch.  If you are even in the area, stop by, see the pets, and try to make even a small donation!

So many kitties... we were all so happy that they were so happy!!  What a life!!

It was just 3 days but we all felt recharged on the drive home.

Little Blu's designs on shirts and tote bags came in just before the holiday and she LOVES seeing people from all over send pictures in wearing her creations!! Thank you all for posting and texting the photos of you, your kids, relatives in Liv Blu designs!! Huge thank you again to Robert and Paper Clouds Apparel for making that happen!!!!! (I have about 15 photos from people in her shirts but don't have room to post them all) :-)

We are on the official countdown to Liv being done with Chemo. About 5 weeks to go and this mama is anxiously counting down the days. Thank you everyone for your continued love and support.

Our crazy FamBam in our "wumsies"  (thank you Tia Christy!)  Happy New Year!!! Liv's next dose is January 6th and then we are counting down!!!

                                                     HAPPY NEW YEAR!!!!

Bonus Footage:  Liv Blu's Anthem

"Scans show no return of disease"

I started this next update before Blu had her scans but thanks to Facebook, most people saw and we are so happy to report, her scans showed NO sign of disease having returned.  More directly, they didn't show any Cancer!  Sigh of relief!!! I cried, and cried, then celebrated, then cried and I think I have zero tears left in me.  I didn't realize I was so worried till I heard the news.  During her scans I kept looking for tumors and freaked myself out with all the dark spots and things I thought might be bad, they said nothing showed up.  That said, she still has 8 weeks remaining before final scans.

 Walking into her scans. THANK YOU UNIVERSE!!!

Her port is clearly shown. 

Xray was super easy!

Officially Liv has 8 weeks left.  Its CRAZY to think about how fast time has gone since July 29th when Max and I took her in for "constipation."  What an absolute whirlwind this ride has been. 

It's been hard but it has also come with so many lessons and opportunities to show Jet and Liv about helping others, being humble, being understanding, karma, love, friendship, and enjoying life NOW because my goodness you don't know what will happen tomorrow. 

I am ready to be done with this hallway!

There is nothing like seeing your child suffer.  There is nothing, and yes I mean nothing, worse than seeing your child cry in pain, go through surgery, not understand all that is happening, having to explain one more poke, one more scan, one more needle and admittance to the hospital, just one more hour in the ER or oncology ward, one more doctor visit,  carrying around her turquoise vomit bucket places etc etc.  But....she is going to be so much stronger (which if you know Blu this idea seems near impossible because she is one bad ass little girl), her brother Jet has a new understanding of patience, we ALL have a better understanding of appreciation for friends, and family and as hard as it is, letting others help because people really do want to help.  People really are good and they just want to help.

On that note- we took several gifts that had been given to Liv which she had duplicates of and donated to the Treasure Chest at the Clinic.  Liv LOVES giving back and this made her day :-)

Liv's big dose last friday went...ehh...ok.  Port access went fine but no blood would come out.  This has never happened.  They put her through all these motions, arm raises, sitting up, lying down etc to get blood flow.  This added a solid 2 hours onto what I was secretly hoping would be max 4 hours.  Liv was a trooper of course and smiled through it all, even the port access.  Everything seemed to take longer and we were wiped out by the time we left.  Not knowing whether or not she would be sick at night we both took turns being awake to look at her, feel her head, check her blankets.  Being so tired we both snored like a somebody warming up their Harley and kept each other up all night. Both kids sleep on our floors on their mattress toppers and we love having them next to us but between Liv grinding her teeth (which has to be the most uncomfortable sound ever... like nails on a chalkboard uncomfortable), to Jet who wake up at midnight nearly every night and sneezes a solid 12 times before going back to bed, to Ringo laying on Jet's bed scratching his dry skin, to Peekay who, bless his heart, has bronchitis and coughs like he just chain smoked a pack of cigarettes, to me waking at 5 and praying silently it is only midnight... well... neither Max nor myself have been sleeping all that well these days so I feel like I am running on empty most days and we all need a vacation lol!! :-) 

This dose was the biggest so far and it knocked her out.  She was nauseous on the way home and Daddy carried her upstairs and got her comfy for the rest of the day.  She did well Saturday  but then when I came upstairs Sunday morning Max was sitting with her helping her vomit in the toilet. Such a sweet, sad but also precious photo.  Sometimes I think I am taking too many photos but I also think come 25 she will look back and be happy these moments were captured on film.

Carry me Daddy!

He handles her throwing up so much better than I do.

Savy, Gabrielle and Blu- my good friends Melinda and Devri's amazing girls came to visit. They had fun wearing Liv's hats and playing together. They are all born within 4 months of each other!!

As many of you already know, Liv Blu's art was turned into shirts and a cute tote bag and its been AMAZING seeing people post photos in support of her.  I mean AMAZING!!!  Liv was pretty emotional seeing the first one as its a visual sign of love and support and it just, ahhhhhhhhhhhh, makes my heart swell so much seeing how happy it makes her!  Art is her love language.  Its how she shows her love and thanks and feelings- she draws all day and makes notes and pictures so to see others wearing her love, well, I am beside myself.  Thank you everyone who got a shirt or tote.  A HUGE thank you to Robert Thorton of Paper Clouds Apparel who made this all happen.  I encourage everyone to check out papercloudsapparel.com and see the amazing things he is doing for those in need.  Plus he is just a super rad dude who sets a great example for so many.

Today at Jet's soccer game :-) So happy in Max's lap. :-)

So many moochies for his baby girl :-) 

On top of the fantastic news from her scans, we found out that next Friday we're scheduled for.... absolutely nothing!  She has no labs, no scans, no blood draws and it will be the first time since July 29th that we have a break from the hospital. Yippee!!!  The following week she will get the biggest dose yet but I'm living one day at a time and enjoying a small break from it all.  Thank you everyone!

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.