More Long Weeks- 2nd cycle of Maintenance

Wow. I think it's been 2 weeks of fun. We are grateful that we were able to go home and do the antibiotics at home, but it gets exhausting every 8 hrs. She handles it so well and actually likes it. She always reminded me and loved to "help". She actually had the order down and knew when to flush and heparinize. (is that a word?) We knew she had almost 0 immune system so we knew we had to stay at our house. I fully expected her to recover quickly, take part in the big weekend up ahead and get back on chemo. We knew her ANC had to reach 750 before we could get off the antibiotics.

Boy, was I wrong?!

Slade's croup was still bad and he was miserable. We tried to make it as fun as possible knowing we were stuck inside (cause it's way too hot to go outside). The weekend consisted of Aladdin at Tuachan, family pictures, famliy parties and uncle Nate's homecoming. All of her cousins were in town and she was crushed she couldn't attend Aladdin. We checked on Saturday (after family pics which were outside) and I was shocked that it was only 200. Home again and not going ANYWHERE. I wasn't willing to risk it anymore .

So we all missed out on a lot of fun and family time. She handled it well (prob better than me).... but it is tough to keep a 3 and 1 yr old entertained all day in one house!

Slade was extra hard due to his illness. He whined, cried and nothing made him happy. Nights were long between antibiotics and crying children. I was/am exhausted... but what mother isn't!?

One thing that did keep her busy... make-up!!! Thank you Grammy for cleaning out (not). It did keep her entertained and messy. She LOVED it!

She felt terrible that she was missing out on dance, gymnastics and cheer. We tried to make it work at home.... I am a great teacher!! Too bad she didn't want to hear it from me. Ha.

We checked again on Monday... only 400!! I couldn't believe it . It had been one week!!

 We have had a lot of quality time and it has been good for us. BUT we are stir crazy. I couldn't even run to the grocery store for milk and had to call my mom for some. I guess knowing you CAN'T leave makes it worse.

 We checked again on Thursday and it only went up to 500. I was crushed... and so was she. She kept asking when her counts would be good enough to play. I hated telling her that we had NO IDEA!

We began to check the following Monday and it wouldn't draw blood. It had been giving us trouble a few times but not like this. We spent 4 hours trying to get blood (got one sample but it was diluted). Nurse Jeanette had to keep coming back, we had to reaccess twice (once without numbing and it was traumatic). Still.. no blood. I was freaking out. We put TPA in the line and decided to try in the morning.

The next morning was a big day... preschool. She was so excited. I had no idea what her counts were (assumed they had gone up). We sent her to school and they were great with her. They already had her very own supplies so she didn't have to share crayons and utensils with other kids. I teared up when I left her because she has gone through so much and come so far in one year. I was one proud mama!

I was working while Nurse Jeanette came to try again. I guess it was traumatic again because they talked about getting a peripheral draw. Couldn't get an accurate sample again. I could barely focus at work (verge of tears) while hearing this and kept thinking of the worse. There was a chance it would have to be replaced. I kept thinking about the first time she had her port replaced. It wasn't the best thing in the world. I just want her to catch a break.

We ended up heading to the peds floor to have Nurse Jason look at it. We took out the needle and put a new one in. It ended up working after a few things and positions. We got enough to send down for a CBC. We put more TPA in and let it sit. Same thing happened after and couldn't it to flow. So... something is happening... could be a kink, the way it's been moved due to her growing, a fibrin sheath on the end (the body could have formed it due to something foriegn in it's body). Really hoping it resolves itself so that we don't even have to cross that path. Really hoping and praying.

She has been a trooper these last few weeks. I am very impressed by her strength. I hope everything works out and she can feel normal again.(whatever that is)

She needs to get back on chemo and finish out her treatment.

Again, I am one proud mama.... she is a tough girl!