Brinley had her clinic visit on Thursday. We brought the camera this time! This place is such a big part of her life, I figure I should have lots of pictures for her to look at when she's older. First we checked in.

Here is the nurse preparing to access her port. It has to be cleaned really well and they need to be sterile to make sure no bacteria sneak in there...
Then they put the needle in, Brinley is getting so much better at it. She always gets nervous, then when it is over she says "that didn't even hurt!" Like she's surprised or something, every single time.
Up close, this is what the needle looks like. Then they put a bandage over it and keep it in until she is done with all her chemo and meds. Hers sticks out more than most kids because of the location, and, well, because she is a skinny minny.
We chatted with our oncologist for a while, I had a lot of questions this time. I asked about the neuropathy she was experiencing last month. There is a medicine they can give her to help, but it is not a medicine that we can just give as needed, she has to take it 3x/day all the time. So we decided to see how this month goes and if it is like last month or worse, we will probably try it. I just don't think she should have to suffer through it.

Then we headed down to the RTU for her lumbar puncture.
They usually have David hold her for the sedation, only one of us can go back. I did it once and I didn't like seeing her like that, and David likes to be the one to go back, so that worked out. She had her favorite sparkly tu-tu over her clothes.
This time they had her lie down and smell strawberry scented oxygen, and that really relaxed her. She usually cries a little bit, but this time she was completely relaxed when he put the sedation drug through her port.

We asked one of the nurses to take pictures this time, since we have never actually seen the procedure. This is the preparation, then they stick a needle into her spine, get some spinal fluid to check for cancer cells, then inject IV methotrexate to prevent relapse in her spinal fluid. We got pictures of the whole procedure, but this is as far as I'll go this time, it is quite the needle they stick in there. And in case you didn't already know, that is NOT blood on her. We have wonderful doctors who do a great job and I am thankful they allowed us to have pictures of the procedure so we know what goes on with our daughter when we can't be there.
When she wakes up, they go get us right away, sometimes she is a little slow waking up, and we never know how she will be.
She was especially groggy this time, the tears are because she had waited ALL day for a "big pretzel", or "the daddy pretzel" and we made her drink before she could get it to make sure she would keep something down. She was quite bent out of shape about that.
Not a big pretzel yet, but after fasting all morning, she was satisfied with chips.
Back upstairs to clinic for a big pretzel, chemo and pentamidine, the nurse is de-accessing her port now, which is actually worse for Brinley than the access. She hates the dressing coming off.

After arriving at 9:00, we finally head out around 2:30.

Her counts were right where they should be, her ANC is 1200, so we will leave her chemo alone for now. This may just be the right dose for her. So she is still at 25% or methotrexate and 50% oral 6MP.

Tomorrow and Sunday should be the days she feels the absolute worst, with the chemo steroids combo, then we will be dealing with steroids, the drug that turns angels into monsters. It will be particularly hard this time, especially for David, because I am getting all 4 wisdom teeth out Tuesday and he will be on his own pretty much. He's going to stay home the rest of the week, I think I have the best husband in the world. We're taking a deep breath and going under.......see you on the other side!


Emily said...

Thanks for posting the pictures that document the procedures Brinley has to go through so often. What an ordeal... She is one BRAVE little girl!!!

Hope the wisdom teeth procedure went well for you. That can't be any fun at all.

Love you guys!

Ashley said...

Look at her gorgeous locks! What A trooper. I'm so glad to hear that the medical staff are taking good care of you. Even as an L&D nurse, it makes me proud of my profession. Good luck with the wisdom teeth!

Anonymous said...

You all are so brave...thank you for enlightening us even more and bringing us closer into your world.Best of luck with the dentist and please don't hesitate to call..much love and hugs xoxoxoxoxoxo
A Nancy

Grandma Darlene said...

These pictures of our little girl's treatments really makes us realize what you've been through. She is a darling, corageous little angel. What wonderful parents you are. God bless you. Hope you are recovering from your extractions Kristen, just another hurdle for you--our Olympic Mother! Love, Aunt Darlene & Uncle Will.