Tuesday, August 21, 2012

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!

Saturday, August 11, 2012

This feels like the longest week ever. I know it could be so much worse but I needed to journal my thoughts. Quick recap.

Monday went pretty well so I ended up going to coach cheer on Monday night while family entertained. She ended up fevering and crying for me. That's how you know when she doesn't feel well. It was a long night... not to mention the beeps, vitals, labs drawn and constant noise. Sleep was not happening for me. Not to mention she wanted me to sleep in the bed with her.
Tuesday... she woke up fever free but very whiny. Labs were not fabulous.. ANC 0! I couldn't believe it. Dr. Marsden came to talk to us and Taleah wouldn't even look at him. She made me cover her face and started crying. That is NOT like her. I started crying because I knew she was not right. I ended up going to work and my mom and Tavia entertained. I was calmed with pictures from them doing ballet and having a "party" in the room. Tuesday night was supposed to be Hairspray at Tuacahn with my family. Obviously, we couldn't go and I was pretty bummed about it. I ended up staying the night with her again. I was dreading the night and almost felt anxious like I did when night rolled around with a newborn baby. I was anxious to get out of there. I was praying for the morning because at this point her cultures were negative and she had been fever free for 24 hours.

The news came and we were able to go home even though her ANC was under 100. That can be dangerous so we were told to stay home and limit visitors. We were excited to pick Slade up (who had been staying with the Stevensons) and go home.

We came home and ate lunch together. Slade was a little whiny and we were all ready for naps. Slade felt warm so I took his temp and it read 101.5. GREAT! That is the last thing I wanted. I was nervous for Taleah's safety AND I couldn't help but think it was similar to what happened to Taleah. (with the fever 3 weeks prior- Roseola virus). Taleah's temp was going from 99-100 and I knew if it went past 101 we were heading back in to the hospital. During nap time, my famliy had stopped by because we were supposed to head to Vegas for the Celine Dion show. I have been DREAMING of going for a LONG time. Taleah screamed when I said I was leaving. Last minute.. I decided not to go and I was devastated. Yes, I cried again. I ended up calling Marsden's office (crying) and explaining the situation with Slade. In the meantime, Dani Prince had told me to have them nose swab kids because that was what finally came back positive for Chase a few months prior.
gI ended up taking Slade in to be looked at and do the swab. We figured if his was positive for one of the viruses that was a good indication that Taleah had it too. We ended up drawing his labs because I couldn't shake the thought of cancer. Poor Nurse Heather and Marsden... had to listen to this crying mom.
As we were waiting to draw labs, Scott called informing me of Taleah's fever that had reached 101.3. Yay, back to the hospital we went. Blah!
When I had to tell Taleah, she was heart broken to have to go back. We had only been home for 4 hours. They decided to do the swab on her as well and PRAYING that it would come back positive so that the new fever wasn't something more serious. The swab was traumatic. The first sample fell on the ground so she did it twice. She still asks me if she has to do that again.

I felt terrible as a mom because Slade was sick and I couldn't take care of him. I had no idea if they had the same thing. Scott's parents took Slade again and we stayed as a family that night. We tired to make the best of it and keep her happy. Keeping a 3 yr old enertained ALL day in the hospital is a chore. Good thing we always have help!

Thursday morning we would hear the results of the nose swab. IF she was fever free and the cultures stayed negative AND the swab was positive then we could go home. However, it would be strict  rules... limited visitors, antibiotics through her port every 8 hrs until ANC reached 750, labs every few days, no chemo pills and watch her closely.
When I heard positive for para influenza 3 I was SO happy. Sounds crazy right!? 
She was so  happy to hear she could go home!!! I was still nervous about her low numbers but I felt like I could keep her safer at home.
They wanted us to keep Slade separated from Taleah so my mom kept him while I had Taleah. Slade was still fevering and not feeling well. His cough wasn't as bad as Taleah's but still there.
Thursday night was long because Taleah woke up a lot coughing pretty bad. Slade had a terrible night with my mom and trouble breathing. Ended up with croup so we took him in on Friday. Yep, another visit to the doctors office. I couldn't believe it. They gave him an oral steroid and sent us on our way. We kept them apart for almost another day. I can't even express how horrible I felt that I couldn't be there for both my kids. Terrible feeling.
She really handled it all so well. She only lost it a few times. I think I cried more than she did. She is such a tough girly and I am so lucky to be her mommy!
Again, I know that things could be SO much worse. Things have been ok since we have been home. It's hard when there was a jam packed weekend of family events going on that we will have to miss out on. BUT at least we are home and getting better.
We are waiting for the results of her labs that were just drawn to see if she has come up at all. I really hope so. I want to get her feeling better and back on her chemo. Things will get better. I am hoping we will laugh about it soon... but I am not quite ready to laugh yet! :)

Wednesday, August 8, 2012

I guess you could say it has been eventful here at the hospital. She played pretty good on Monday, but as the day continued on I could tell she wasn't feeling well. By the end of the night she wasn't doing great. She fevered again and only wanted me. She didn't even want anyone else to look or talk to her. She was miserable and it broke it my heart. The night wasn't too bad but she woke up pretty sad. She usually LOVES Dr. Marsden but not Tue morning. She burst into tears when he came in and wanted me to cover her face. I started crying and I couldn't believe that she was getting worse. We didn't draw labs and now I am glad that we waited one more day. I was supposed to go into work, but she wasn't happy about it. She finally agreed and Tavia had some things to work some magic. I was a wreck all day long. I kept losing it in the bathroom. Yep, on the toilet, washing my hands or even looking in the mirror (TMI?). I kept telling myself to keep it together. The unknown is scary and watching them suffer is awful.
 My mom and Tavia kept her entertained. They danced, sang and were beautiful ballerinas. My mom even bought her some ballet shoes (took 3 tries). She was more than thrilled and even danced while hanging onto her pole. It made work a lot easier knowing she was having a good time. AND it was nice to get out of that room and focus on something else (Even it was clouded by thoughts of her ALL day).

I guess you could say it was another wake up call. Cherish your kids and family. Love them and focus on what is important. I guess it is a lesson I still haven't learned. Taleah is such a sweet spirit and so strong. She didn't even cry very much. She is my hero. I am lucky to be her momma. I am learning lots. 
We appreciate all of the help we have received. I am so glad that Slade was so loved and taken care of while we stayed in the hospital. We have GREAT families.
We are headed home today even though her ANC is still VERY low. We will have to be extremely careful so we don't end up back in the hospital. I am PRAYING that it will come up quickly so we can enjoy a little bit of the fun weekend ahead. We will check her labs twice a week until we can get them under control. For now... her chemo is held until her numbers come back up. AHH. Scares me. Faith... have faith. Thanks again for your prayers.

Monday, August 6, 2012

I have been meaning to update for some time now but we have been having too much fun being "normal". Of course that can't last too long right? 
She woke up Sunday morning with a headache and I figured it was probably due to the methotrexate pills on Thur nights. It has happened before so I had her drink a lot of water and get rest. We headed to church, lunch at the Stevensons and then had some visitors over to our house. She was a little whiny but still played and partied with everyone. While playing volleyball outside, she felt warm. I took her inside to cool down and re check her temp. It was still a fever so we began the "fever protocol". blah. I was a little more calm because it feels fairly normal. I still worry, stress, get sick to my stomach and all of that. I always worry about Slade and the fact that he may feel abandoned. I know he is being loved and taken care of but as his mom I always feel guilty. I wish I could be in 2 places at once. I wish I would have totally cleaned my house yesterday like I had planned, finished my laundry and played with Slade more. BUT I am here with Taleah and trying to keep her happy. I do love the one on one time with her but I wish it wasn't under these circumstances. 
She has an ANC of 0. Seriously. Pretty sure it has never been this low. I am sort of freaking out! We will for sure be here for at least 48 hours if not longer. If her ANC doesn't come up at all then there is no telling how long we will be here. Her Hct is 29 (which isn't terrible but isn't great), plts are 140,00 which is ok too. Her dang white blood cells and ANC are WAY low. Basically, no immune system. Everything else is checking out so far so they are thinking that her increased chemo pill has caused her counts to drop and then a virus hit her when she was down. Poor thing. 
Scott spent the night with her and she spiked a fever at 4am. Scott said getting her to take the Tylenol was torture and heart breaking. I felt so bad. I got teary eyed as he was telling me. This girl is so brave and strong. I admire her more and more every day.
I must say that people never cease to amaze me. We were scheduled to have out water softener in this morning so as he called I told him I wasn't home because of our hospital visit. He asked if Taleah was my daughter and said he was wanting to do something nice for us and wanted to do it for free. I was speechless. What amazing people. I told him he couldn't do that for us, but he insisted. We will still try and get him something for what he is doing, but honestly there are so many good people. We feel so blessed.
We will keep praying for her counts to come up. We had such a fun week planned. More fun things planned than we have done in a long time. Oh well. I guess we can pray and hope for the best!