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