A busy day at Children's with Annie B

Today was the first day of her second phase called Consolidation. We went back into the hospital for the first of her weekly lumbar punctures. A lot of things happened today at the hospital, which ended up being a LONG DAY. But thankfully Jaidyn was in a good mood because hadn't had to take any chemo's or steroids all week which was a nice break for EVERYONE.

The steroids have slowly exited her body and that happy little girl of mine has finally graced us with her presence. There are no words to describe how amazing it is to see Jaidyn so perky and playful, but most of all hearing that laugh again. A laugh that has been constant with our current visitor. My best friend from Portland, OR, who I haven't seen in almost 2 years has come to visit. Brandi (Annie B) has come at the perfect time. She has been the main source of laughter and smiles in the last couple days, exactly what Jaidyn and I needed. I am so glad she was able to be there for Jaidyn and I especially for today's hospital visit.


Lumbar punctures are easy peasy now, for Jaidyn at least. We check into clinic, they do her vitals, we go play in the play room for a bit and then its time to get her butterfly. Jaidyn was extra excited to show Annie B how she gets her butterfly. So once that was all done and her blood was sent off to the lab, we go back and do a little bit more playing until its her turn for her procedure.

We had noticed the night before that Jaidyn's voice was kinda shaky and raspy sounding, and I had remembered that one of the Chemo's can affect vocal cords, so I mentioned something to the Doctor and right away a phone call was placed to the Ear, Nose and Throat specialist.  I had no clue what was in store for us next. They sent us upstairs to go see the ENT, where they told us they would be putting a tiny tube with a camera up Jaidyn's nose and down her throat so they could see her vocal cords. No problem right? Oh, by the way... she'll be awake and sitting on my lap while they do this.

That was real fun.... (sense my sarcasm?) We managed to get it done, while I held her Brandi kept her entertained. Her vocal cords looked normal and were moving properly so nothing to worry about at this time. So back downstairs for her LP we go, where for the rest of the day Jaidyn told everyone she had spaghetti up her nose.

It was really nice to have Brandi there with me especially for that and also while she's in getting her LP done. Even though she's done it a handful of times now it still upsets me knowing what she's getting done

But she always comes out with that lovely smile on her face, and something silly to say about being underwater when they wheel her out of the room. After every LP she has to lay down for an hour so that she doesn't get a headache as some CSF can leak out of the puncture site. So Jaidyn and Annie B got to lay on the bed, I was told I could only sit on the chair.

Jaidyn has to lay down for an hour after her LP so she doesn't get a headache from any of her CSF leaking out. So it is every ones challenge to come up with ways to keep her laying down. "That girl"- Brandi did a very good job. 

Her blood results came back and her Hemoglobin was quite low, which I suspected as she had been pretty lethargic over the last 2 days. So she needed to get a blood transfusion. The blood was ordered (which usually takes an hour or so to get into the clinic) then the transfusion can be done over 3-4 hours. Again, so thankful Brandi was there with me as this was going to be a long day.


Off to the playroom we go.


This playroom is packed full of every toy possible, along with computers, every gaming system and a huge flat screen TV with a comfy couch in front. Different family's are in there for different reasons all equally going through a tough time. You'd never think that Brandi and I would get yelled, by a mother of a sick child. 


She had her show on the TV (which she wasn't even watching) and Jaidyn wanted to watch Back in the Yards (backyardigains) so I asked if we could use the TV and not kidding you, she got mad at us. Wow, thinking about it makes my blood boil. But this wasn't your average mother. This was a mother who was comparing her sons Anemia with another mothers son's terminal bone cancer. Even though I'm sure she has gone through a lot with the anemia battle, I don't think that this is a place of competition. I could go on and on about this specific mother, but its a bit off topic and inappropriate so we'll just hope we don't have to see her again. 


We played trains, dinosaurs and cars (tomboy much?) then moved on to playing dress up. I took on the roll of photographer. Finishing off the day with a ton of arts and crafts. It really is amazing how relaxing "gluing" can be.

Eight hours later, and its 4:45pm, and we're done the blood transfusion. Next is her Vincristine Chemo which thankfully only takes 2 minutes, then a quick removal of butterfly and we're done!!!


Back to the pharmacy to pick up the "Consolidation" drugs and home for hopefully a good sleep.


Thank you Brandi for being so amazing with Jaidyn and helping me get through this tough time. You're love and support means everything to Jaidyn and I, we are forever grateful. xo