It actually felt good to be back "home" because Max and I knew Livy Blu Butt was in good hand and was going to get well. I knew the IV's would hydrate her, and I knew the meds would kick in. I also knew we were all forced to be here 24/7, together, and she would get all the love and meds she needs to heal. I also think there is so much heavy weight that we've all felt this past weekend with constant wondering of what to do and when do we take her in. It is so hard to know sometimes and at least when we're here, we're surrounded by people with years and years of experience and all of which have her best interest at heart and in mind.
Liv's overall condition has been on and off since yesterday. Really, very similar to the weekend only this time we had someone who was able to check counts, numbers, stats and administer morphine when her pain was over the top.
Her "Liver Injury" has been reduced to her having a 'bug' which knocked her out hard and a generic type of Hepatitis (no, not the kind you are thinking of... while it may come as a shock that she hasn't ben shooting up drugs with shared needles) which is common with liver malfunctions but with no real explanation. She doesn't have Hep A, B or C, but her liver is still jacked up so its labeled as hepatitis and a viral bug. The other side of all of this is that her liver isn't tolerating the one chemo med so we expect that to get adjusted for her next round.
Cancer patients are constantly concerned with their Absolute Neutrophil Count (ANC) levels. A normal person's ANC is well above a thousand while a moderate risk is under 1,000, and anything uner 500 means we have to be extra carefull. If Liv goes under 500 she can't go to school anymore or other public spaces. At our "Big Dose" two weeks ago her ANC was at 1,100. This last Friday at chemo she dropped to 700 which is still ok. That said we were expecting her to drop close to the 500 mark considering we've been told to expect the effects of the Big Dose to show up right as we were getting her Little Dose. The blood work came back today... ANC = 90. Sighhhh........ no wonder she feels awful.! Her liver "numbers" should be between 30 and 40 to be normal. Hers are at 3,000. Eff.
Antibiotics were given, scans were done, platelets were administered, and finally a 4-5 hour blood transfusion completed the process. Basically her blood making factory wasn't making the necessary cells quick enough so we had to call a timeout and sub some fresh blood into the game :) DaddyMax explained the process which of course painted her as basically the most coolest kid ever because she gets super hero bionic blood and ultimately, she was ok with it.
She had several good hours in which she had an orange popsicle and randomly (but frequently) requested Pumpkin Pie (thanks to all those who have offered to deliver!)
Damma arrived and it was the first time Blu had an actual smile in what seemed like forever. They played cards, Connect 4 and, of course, Damma came with a few surprises for both Blu and Jet (my mom just plain rocks in every way!) Liv was super happy and, as Damma's do, Sam needed her baby fix so everyone was happy. It's times like these that I feel blessed that my mom and Max love each other and actually enjoy hanging out. (I feel just as blessed with when it comes to his mom and family) Sure, he may whine and cry when she beats him in Gin but it's a respectful whine... :)
I left Max, Damma and Liv for an hour and a half to pick up Super Jet :) He was so stoked to see me and man it melts my mommy heart when I'm driving back to the hospital with him in the back seat and he wiggles his fingers for me to grab his hand :) :) :) We just hold hands for half a minute and it gives us both that connection we need. God, he is literally the sweetest kid - I mean the sweetest.
We got back to our Rady Hospital home and he and Daddy Max finished up his homework. Jet was the bearer of some fun news that none of us knew about... a massive card from all the kids in Liv's 1st/2nd grad combo class.
After some good but short FamBam time the boys took off for a soccer "film night" at fellow team parent's house. It was so good for Max and Jet to have boy time together but also for Jet to have a "normal day." While they were out and about, Little Blu and I watched movies and ate ice chips. She also colored while I played on FB for a bit and caught up on some work emails.
The good times were short lived however as things turned south without any notice. Liv's fever spiked again late this afternoon/early evening. She was MISERABLE and crying in pain once again. Ugh- its so hard to watch her suffer. But, just as they have every time before, the staff here rocks and they got her back to a comfortable place as she was well taken care of.
Jet is at his favorite place for the night... Damma's! Max, Liv, and me are settled in for the night. As I type, Max and Liv are playing cards... and she is legitimately crushing him. Even with chemo the little stinker can beat him :-) Do not ever play Tic-Tac-Toe, Connect 4, or Speed with her because you won't win. Ever. Seriously, I think I just heard her say "Max you really suck at this game." I"m not sure whether to be upset at her language or proud that she's putting the smack down :)
Max is my rock. He is the kids rock. He's even my moms rock a lot of the time. If I had to do this by myself, well, wow... I know as mama bear I could (and would) but I cry to even think about it dealing with everything all on my own. I'm fine with admitting that I'm a strong woman. All Craig women are but this has shaken me to my core and he just picks me up, makes us all laugh, gets the things done that I can't seem to. He handles what I can't and then I do the same for him. Its a crazy match (believe me... we have our own issues) but our little FamBam is so perfect... for us. He left tonight to take Jet to his fun soccer "film night" and as I was walking back from getting Blu more ice chips, I look up to see him coming down the hall, returning to his girls, and tears almost well in my eyes as my love is back to sleep next to our baby girl (on the floor no less) all night. Through some really crazy, stressful, insane times (but not forgetting all the good!) he is there through it all. Thank you my love.
As we got up to get Blu to pee before bed she started talking about her hair. Daddy Max asked her if she is still going to shave his head when her hair starts to "really" go and she said, "Uh yeah... on one side I'm going to shave 'watch me whip' and the other, 'nay nay'" AaaHahahahahaha! After the laughs stopped she asked if there was stuff to rub on her head to make it keep growing or, at the very least, not fall out anymore. So innocent and sweet! She talked with Max about options. He asked her if she thought that maybe there would be a time where we should just shave it. Her expression went from jovial to serious... she stared at the ground in deep thought and simply said, "no." Attempt #1 at adjusting expectations for her hair = not so much.
I am exhausted and we have at least two more days here but, again, I'm just SO full of love thanks to all our friends and family who keep her in their thoughts. I read all the posts and and it fills me up with such energy and love. Thank you!!!
As we kiss her goodnight I was reminded of something that I noticed for the first time Friday.. even her eyelashes are starting to fall out too. They are all over her soft baby cheeks :-/ Oh my baby girl... "I love you more than the Universe loves all the stars and planets!"
You guys are doing so good. You amaze me. Love is full in the fambam💗 Stay strong. God is with you.
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