Round 3.....she's losing her hair :-(

Well, today was Round 3 for our Little Livy Blu.  Her spirits were really good all week.  She has been so happy to be in school and starting to getting used to the schedule which includes knowing Chemo is coming up and, overall, she's been working through her emotions really well.  Thursday evening we had a little melt down.  My plan was to have them sleep in their beds as Thursday is a 'school night' but Liv worked her magic with the big softie, DaddyMax, so of course we all ended up together as usual. Max reads most nights and this is how I found them.  No TV or talking, just reading a great story and connecting as our little family does. She gets extra clingy the night before and we just want to love and support her emotions and needs. Jet too senses things and I'm so grateful our babies love being next to us all night. I love waking up and peeking at Jet on Max's side and Liv next to me.

Today we had a big breakfast.  I have been making crepes lately and surprisingly, given my total lack of any cooking ability, the kids love them :-)  I'm happy when their bellies are full for the day.  Once everyone was fed we all loaded up and got Jet off to school.


Upon pulling into Rady's Children's Hospital the tears started streaming from Blu's face and all she could say was "I hate Chemo and I'm afraid."  We were praying to not have the absolute melt down like last Friday but now we weren't so sure... another epic scene seemed to be on its way.  We got checked in and Liv and Max had a road race around the playground while we waited to get called back.  She won of course!

Compared to last Friday she wasn't quite in total hysterics this week but, it was pretty close.  We were lucky to get our same nurse, Ellie.  Liv really likes her and she was comforting however baby girl still almost made herself sick with the stress of them poking through her port. I can't blame her I guess as this is only round 3 but we all hope this will become easier. As usual she sat in DaddyMax's lap for the duration. God help me if something happened to him..

They say the chemo builds up in the system and welp, we have proof.  She didn't fair so well this time. She came away with a super, and I mean super, upset stomach.  She ran to the bathroom a few times and shed many, many tears.  Another source of stress for us all was that this was the first time she had to go to her biological dads post chemo because, "It's the schedule."  I drove her to his house and stayed with her for several hours because that's what a mommy does and, although she was supposed to stay there overnight, I finally got to take her home.  That's all I can say on that but the important thing is that she is now home with us and tucked into bed watching movies.  She still feels awful and will sleep next to us all night where I can monitor her for fever or anything else. I don't think I would sleep if she weren't here.

Next week is her 'big' round where they use both meds and I expect her to be worse than today but always trying to remain positive.  I guess the reality is, this is a long effing road for her (and us) and its just going to be what it will be. We will survive and be ok. The energy coming her way from everyone through thoughts, prayers, treats for her, cards, love and attention help tremendously and we are all so grateful.

Liv got my hair which is thick and there is a lot of it so we were hoping that since Blu was the same, she might not experience much hair loss if any.  Turns out, we were wrong :-/  It is like something switched on in her body yesterday and the entire morning it has continued.  She seems to be literally shedding.  Strands are just falling out of her head.  I can touch her hair and they just come away in my fingers.  It is all over my car and her clothes and the bathroom.  It is so strange to see this happening before our own eyes and so quick!! (she still has a total full head of hair as you can see in the pictures, but at this rate it can't be long before its gone) This makes me so sad. I know it is just hair and it will grow back but the oncology ward is so full of all these precious bald babies and I know she is next....FuckCancer.

We talked about different types of cancer on the way to the hospital, lung cancer, breast ('cupcake')cancer, pancreatic (which is what my dad died from), brain cancer, the list goes on and Liv is especially happy that her cancer won't make her lose her 'cupcakes' as she wants hers big and squishy like mommy's hahahaahhah :-)  She's definitely starting to talk more about cancer in general.  She asked Max last night to Google, "How do chromosomes get damaged" and she's quizzed both of us about the history of cancer in our family.  We see this as a good thing.  She's also starting to be open to coming up with a routine for helping her/us get through the stress of port access.  We'll see what we come up with this week but that's our focus for the next visit.

Thank you to everyone for the love and support. It could be waaaaaaay worse and while sometimes it seems tough and gets emotional, we are overall really lucky to be on the road we're on.

Love,

Carlie