Max and I checked her in Sunday and went home Thursday late morning. Another week down living hour by hour.
Her Absolute Neutrophil Count (a measure of the number of neutrophil granulocytes present in the blood) dropped like a rock! Neutrophils are a type of white blood cell that fights against infection. Two weeks ago, just before her double dose of chemo, her ANC was at 1,100. That number dipped, expectedly, to 700 last Friday after her 5th round of Chemo. By Monday, however, they had plummeted to 90 and were still dropping! By the time we were discharged on Thursday they had fallen all the way down to 16. We were told that this wasn't a surprise considering the impact of the chemotherapy combined with her little body fighting off the mono virus. Her hair continues to get thinner and thinner.
Ultimately her fever went away and they stopped the morphine as her stomach pains subsided and we got to come home late Thursday morning. Technically we could have come home Wednesday but they painted a very clear picture of the return process should we leave and Liv spike another fever. The last thing we wanted to do was come down off of Mt Cancer Sucks only to have to claw our way right back up to base camp the next day so we stayed an extra night just to be safe. As of this update she's had her moments of discomfort but she's hanging in there. No fever... yet. Praying she will be ok.
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| She loved the visit from the therapy dog! |
Mono can take a long time for the body to fully process and it can take months to recover fully. So now we're walking the tightrope of her immune system being super susceptible to infection but at the same time we also don't want to quarantine her. They call Mono the 'kissing' disease and as long as she's not swapping spit with anybody we should be good. If she is swapping spit with somebody we have bigger problems on our hands :)
Liv, being the artist she is, got an award for a painting she completed during her first chemo visit. Jet nicknamed her "Rainbow" when she was about 3 months old and to this day Rainbows are special. Here is her masterpiece!:
She's had a few special treats and photos sent while we were in the hospital this week. My longtime friend Devri sent photos of her dog with a note for Liv which made her so happy....
...and my girl Diana made this awesome post :-)
Auntie Wood let Blu name her latest hummingbird (Lily) and Stanley the fat cat sends Blu daily videos where he talks to her. She loves them!
Friends, Hunter, Alex, Jude & Tristan, The Ireland family (and friends!) sent notes and cards and made Liv some super cool hats for when her hair finally goes.....So cute!! (I am terrible about thank you notes so please everyone know, your treats are appreciated!!)
Thank you to her teacher Mrs. Wallace who continues to send cards from the whole class which lift Liv's spirits immensely.
As you may remember, there was a bit of a Pumpkin Pie frenzy. Well my friend from high school who I haven't seen in 20 years brought Liv the pumpkin pie she so desperately begged for but could only handle a single bite lol. Totally worth it!
My mom continues to be a huge help walking the dogs, bringing clean clothes to the hosptial, shuttling Jet around... basically filling all the gaps. Max's family sends a constant stream of notes, cards, love, and even the occasional FaceTime with the cousins which brighten Liv's day every time.
My girlfriends of... well we're so old that I'll just say forever... surprised me with a visit. I don't know if I have ever been more surprised in my life! Max said he and Liv had a surprise for me and that they needed to go out into the hall to prepare. So he unplugged Liv's "octopus" (that's what we call her IV machine) and they left the room. A few moments later the door opened and Liv said, "OK mom... I hope you're ready for your surprise!" In walked my dear friends Cindy, Kurtney and Jen. My god... I was so shocked I just started bawling!! They brought Liv treats and forced me to leave for a bite and some much needed girl time. I was torn because I don't ever want to leave Liv's side but also realized it really was needed. Besides, Max basically kicked me out :) I got to eat, cry, have a cold beer, cry, talk with friends, cry, and let out some of my emotions that I didn't even know were inside. Thank you girls!! And Max, damn you, but thank you at the same time :-) (the gals brought super cool surprises for Blu - Jen, I love this hat and bracelet!! xoxo )
We got our boy Jet Possible (JP) back yesterday! We've been missing him like something fierce. He opened up to us tonight about the struggles he's having with all that is going on. We're so proud that he uses his voice to communicate because we work really hard to make sure both kids know how important it is to share their feelings. Jet opened up about how it's really hard to see Liv getting a zillion presents and cards. We talked it out and he totally understands why she is getting all of this attention but it is still hard for him all the same. He broke it down that at the end of the day he just wants to get some more attention too and we think that's totally fair. So, if you've been thinking about sending something Liv's way... maybe throw a little love Jet's way instead. Liv has been spoiled to the moon and back... and then halfway back to the moon again.... he could use some TLC too :)
Max and Jet had a boy time breakfast at Buddy's Diner (yes, that's two days in a row... go check it out!) and Damma watched Liv today so we could both hit up Jet's soccer game and gave him some extra attention and love..
Finally, and probably the most positive thing we could have asked for... a schedule change has taken place and Liv will be home before, during and after Chemo till Chemo ends. Whether that is 6months or a year, she gets to be home and so much stress has been removed for her. My mommy heart is ecstatic! And so is Max's DaddyMax heart :) This is the moment we told her about the change...
Max and I have come to the realization that Blu will be in our room for the foreseeable future. I want one of those 'family beds' you see on Etsy!!! (someone make me one please!!!!!) We just can't not have her next to us and while she and Jet usually sleep on their mattress toppers next to us when we have them, Blu has made her way into the bed the last two nights. I don't think she has plans to leave and even if I insisted, Max won't let her out of his sight. So, here she is and where she will be for the next 6 months at least. :-)
Sleeping is the best medicine for her right now and thankfully she is getting plenty of it. We've been able to reinstate the old baby monitor so that we can keep an eye on the Little Bit (thanks Katie :) while we get work done like this update....
So for now we are just healing until next Thursday when we go in for Chemo session #6 of 21. The fight continues!
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