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
