Well, we are done with our first clinic. It was not very fun. I think this is going to get old really fast. We got there and found out she had lost a little more than 2 pounds since we left the hospital last week. She has to do better this week or they will have to put a feeding tube in. That was disappointing.

Then when the nurse went to draw blood from her central line, nothing would come out. She tried and tried, and she could put fluid in but nothing would come out. Brinley was screaming "ow! Ow!" but the nurse said it shouldn't be hurting her. But I say if she is screaming "ow, OW!" it's probably hurting her. Anyways, after a few minutes of trying she was able to suck out enough drops to do the test. I asked her if something was wrong with the line and she said that sometimes it depends on their position and they have to move around a little if it's hard to get the blood out. I thought it was going to be easier with this thing in! I am hoping next week will go better with the blood draw.

Then we saw the doctor who gave us another prescription of oxycodone for her jaw pain so she can eat. I'm a little nervous about how long this will go on and if we will be having to give her these painkillers the entire time of the chemo. I hope not. Her blood counts looked okay. Her red count was high, that was good. Her platelets were really low, but not so low they needed to do a transfusion. So we just have to watch her carefully that she doesn't get injured, because her blood won't clot as well. We have to be careful brushing her teeth and stuff like that and they said she would probably bruise easily. Her ANC was pretty low (that determines how her immune system will fight off infection) and so they don't want us to go in any crowds. No grocery store and stuff like that, unless she wears a mask. So it will be a long week this week.

We felt like yesterday her symptoms were finally starting to wear off and she was a little happier and ate better, and now we have to start all over again.

Then they did her bone marrow biopsy and a spinal tap and put some chemo into her spinal fluid. We will find out the results of the biopsy probably tomorrow sometime. That will determine how well her body is responding to the chemo. The sedated her for those tests, so of course when she woke up she was screaming. She wouldn't calm down, so we finally had to just take her home screaming. She fell asleep on the way home and seems fine now.

Oh boy, I realized today that this is going to be a long road. I'm feeling frustrated and sad and wish I wasn't so helpless in this. I can't do anything to take this away from her and it's kind of depressing. But we're trying to stay strong and get through this.

We found some rain to cheer us up after our Clinic visit :)


Matt & Jen Hanks said...

Krisin!! We love you guys!! Matt and I are praying for you guys morning and night and thinking about you through out the day. You are so courageous! I can't even begin to imagine what you guys are going through. It definitely takes special, strong people to be faced with this situation. You guys are an inspiration to us. Thank you for keeping a blog about what is going on especially since we cannot be there. You guys are amazing and we love you! Keep fighting! We know you guys can all fight this thing! Take care! If you need anything from us, please do not hesitiate to let us know. :)

Stacy said...

Kristin and David
I am so sorry to hear it was a rough day. Love you guys lots!

Huenu said...

What a rough day! Kristen, you're my personal hero. Hope she's doing better tonight. Give her a love from Aunt Huenu, let her know we love her, and take one for you too, while you're at it! LOL. Hope to see you guys soon.

Adria said...

Serenity didn't walk for about 6 weeks and we gave her oxycodone frequently because she was in so much pain. I worried about that, but gradually she needed less & less and we haven't given it to her in some time now.

Remember the first month is the roughest (so far - I have read that Delayed Intensification is harder), so hang in there.

Anonymous said...

i wish i could be there with you to help