Monday, October 31, 2011

Pre-Halloween(this was supposed to be after the Halloween post)

We were trying to enjoy our last little bit before the next phase. There was a cheer Halloween party at Grammy's (outside).... so we went for a minute. She was excited to dress up with Kendall.

They decided to join the kids for their tables.

Not shy at all!

We actually got to hang out that night for a minute. Scott's parents kept the kids while we went to dinner. We could eat and talk. Unusual!

Best group shot.. for real. Pretty cute though!

Interim Maintenance- Day 1 (Halloween)

It felt like forever, but it was only 2 weeks since we stayed at Treena's. It never fails.. always a party. She was so excited to wake up and NOT fast AND to see the kids in their costumes. We arrived at 11:00pm Sunday night, woke up at 6:30am, left for clinic at 7:15am and arrived at 8am.

We had our costume change in the lobby. She was very excited!

She walked in without total fear in her eyes. It may be because she knew she didn't have to go to the RTU.

She has been reviewing some pictures of Chase at clinic and I pointed out that he does it all by himself. So she went ahead and did it... pretty much. You could tell it was hard for her but she wanted to do it.

*weight 31 lbs*

(up 1 pound from diagnosis)

Acessing the port, always one of the hardest. She doesn't love it. Well, she doesn't love the cleaning and the bandage that goes over it. Not many tears though. It's getting easier.

They didn't do a CBC because we had one on Friday. They did some kidney and liver function tests and her liver enzymes are a little high so we are going to watch those.

Waiting for the chemo takes the longest. She was enjoying herself though. Matthew was there to play with and she loved it. It was crazy to see her walk around, dance and be herself while we were there. She is usually clinging to my side. I never thought this day would come.

Thumbs up for chemo. Keeping that Leukemia away!

We didn't have an appt in the RTU but she wanted to see Miss Lindsey (child life specialist). She loves her. They even hooked her up with a treat bag.

All done... and thrilled to be going home!

Luckily the drive home was pretty uneventful. We made it home in time for some festivities. I didn't want to take her out and put her hand in the bowls with LOTS of germs. We did our own thing... and I think she liked it!

Someone had mentioned a while back about a fun/less germy way to do Halloween. My mom provided all of the candy/prizes. We invited Chloe over to go trick-or-treating "Taleah style". All of my siblings dressed up and went to different rooms throughout the house, the girls knocked and received a prize and candy. It was so fun and exciting. She LOVED it! She loved taking pictures with the people at each door as well. Chloe was taking it all in (people/noise overload), but I think she secretly loved it too!! Her mommy said that it was all she could talk about when she left. Good thing Taleah has good friends to help her feel normal!

Slade had to try on the Rapunzel hair... he pulled it off after 2 seconds. Scott was proud of that!

(our attempt at a group pic... the kids were done)

I know I say this a lot, but I don't know what I would do without our families. They help us out so much. Scott kept Slade home while we went up to PCMC. I know it's hard on him when we leave because he wishes he could be there with us. We just do what we have to do. The Stevensons are always so great to take care of Slade. He loves being with them and it makes it so much easier on me! My mom is great to drive with us every time. It makes the trip so much easier in EVERY way. I know I could not do it without them. They are all so willing to help at any time.

We are ready for this phase. It is 56 days long, no at home meds (other than the septra 2 days a week), half of our chemo can be done down here, and it is count dependent. It may get tricky if she doesn't make counts every 10 days. Another lesson to just go with the's out of my control. Trying to keep the anxiety under control...patience.

We have learned a lot from this cancer thing. It does suck, but we are growing. Scott and I have learned a lot. It is hard on our family in so many ways, but we feel blessed to have thing the way they are. Sounds crazy, but we do.

Friday, October 28, 2011

Consolidation- Day 26

It has been so nice to have the week "off" from hospitals (minus Slade's). I have been trying to enjoy the last week of this phase. It has been pretty good. She has been awesome minues the onset of headaches this last week. It freaked me out to be honest. I didn't know what was causing them and they were happening randomly. She was eating, drinking, sleeping and taking the same meds she has been taking the entire month. After speaking the nurse at PCMC, she thought her hematocrit could be low. Some other moms said their kids get them occasionally. The sad thing was the fact that she didn't want ANY extra medicine. She would pretend it was gone to avoid some meds. It broke my heart every time she burst into tears and grabbed her head. It usually lasts about 10 minutes and then she is back to normal. I am still curious and wanting to talk to my oncologist about. Sounds like I am being overly cautious... and maybe I am.

Our week off has consisted of a lot. Texas Roadhouse did a fundraiser (by some co workers). I can't even tell you the love we felt that night. AMAZING! We felt love from friends, co workers, family and complete strangers. I wish there was a way to thank every single person that has helped us out but there is no way. I hope people know that we are extremely appreciative.

I have been more of an emotional rollercoaster this week. I have been having a bad attitude... over a lot of things. One night in particular was rough. Scott was gone (football play offs preparation), Taleah didn't want to take her meds, Slade was extra whiny, my house was a mess, laundry to be done and my body was tired. That says it all... terrible night. I had a lot of emotions that night. Unfair, scary, anxious, mad, sad... I had it all. I just kept thinking, "This just sucks!" Bad attitude... I know. It could be much worse. I am blessed. Just a moment, well really a night.... and kind of this whole week. I feel better now. One day at a time.

Taleah requested Chloe and Ashley to come over for the CBC (blood draw). I was apprehensive at first because (1) I didn't want Chloe to be freaked out if Taleah cried (2) I didn't want Ashley to be freaked out (3) I didn't want to make it harder for Nurse Jeanette. Turned out that it was a good decision. Ashley kept Slade from crawling on top of us. Taleah was pretty brave and hardly cried. We made it "exciting". Ashley distracted Taleah with lots of songs. Hmm... good thing Ash was there or I know we couldn't have done it. Also, Chloe watched intently as her port was accessed. She didn't even flinch. Glad we made it through.

WBC 2.7

RBC 3.47

Hct 31.7

Plts 265,000

ANC 1300

Good enough to start the next phase. Like I have said a million times.. I am really nervous. I hope she handles it well and doesn't have crazy side effects from the new chemo. They will be trying to drive her counts down without making her neutropenic... hoping that doesn't happen or we will be in the hospital some more. It's all part of the process... that's what I keep telling myself. Off to SLC!

Tuesday, October 25, 2011

Consolidation- Day 23

Well, I was loving life because we didn't have to drive to SLC this weekend. We had Monday "off" of clinic. Don't worry, I still had an appt to go to for Slade. He had his stent removed from his urethra. Let's just say he has been much happier since having that thing removed. So my day "off" wasn't really a day off. Oh well.

Then, Tue morning I leave for work at 7am. Scott texts me by 7:45 saying that both kids woke up screaming. Taleah was complaining of not feeling well and Slade just cried especially when getting his diaper changed. Taleah then threw up (luckily they made it to the sink). I was a nervous wreck reading the text... did she have a fever... was she dehydrated... does she have the flu...? I called to make sure he took her temp and reminded him that she had to have septra this morning. Oh man. Slade calmed down and then Taleah threw up again. I hated not being there and having "control" over the situation. (I am slowly learning that I might be a slight control freak)

It's kind of bad to think, but I kept thinking of every scenario. I just knew we were going to be admitted... and maybe we still will. I just have to be ok with the fact that if we do...we do. Anything to help her. I was running through every place(in my mind) we had taken her this weekend. We were careful and not in very crowded consumed my every thought. We had kind of decided that we were still going to "live life", but be careful about it. This treatment plan is a long time to sit home and wait for things to happen. I began to think that maybe I was wrong. She is much happier and heals much quicker (I feel) when she can be somewhat normal.

She has ended up being ok today. She has eaten a fair amount, drank lots of water and played quite a bit. She has complained a few random times of her head hurting... I am guessing a headache or maybe the flu (but she had the flu shot). She has been herself for the most part and that puts me at ease.. for the most part. No temperature, but I will be watching closely.

We had a great time this weekend. The weather has been amazing so we have been able to get out and enjoy things. Taleah was in heaven with the fun filled weekend. And I must say that Slade was a trooper through it all (minus night time).

She has been playing a lot of doctor lately. Everything she says is something that she has done. I have been asking her a lot if her head feels ok and if she has a fever. I suggested tylenol at one point when she complained of her head hurting and she quickly dismissed the pain and wanted NO medicine. I am afraid she won't tell me when she is hurting for fear of additional medicine. Also, while playing pretend she says, "Aww I have a fever. Take my temperature." I immediately panicked and felt her head. She said, "Mom, I am playing pretend." I asked her nicely to not play that kind of pretend to protect my blood pressure/heart.

I guess I am becoming more anxious of the next phase. I will start reading blogs of other cancer cuties and see what we are in for. Sometimes it helps...sometimes it makes my anxiety worse. One of my biggest fears is Taleah not feeling "normal". I am afraid that she won't get the social interaction that she needs. I need to stop being afraid. I know that Heavenly Father has a plan for her. I know that he knows what she/we can handle. Sometimes it is scary to put all my trust in him, but I still do. I know He knows me and my family. It's crazy because I have this feeling that she is going to be ok. No mother wants to think of the very worst for their child (death), but it is one of the effects of cancer. However, I have never thought of losing her. Maybe it is me being naive, but I have always had a feeling of peace amongst all the crazy feelings I feel. I know that is Heavenly Father giving me the peace I need at this time. It must be what I need to feel... to get through this.

I guess this post turned into an emotional one... again. It is my journal and I want to remember every step of this journey. I want Taleah to look back and see how strong she was.

5 more days of consolidation...

Thursday, October 20, 2011

Surgery Again- Slade

As I mentioned before, Taleah was very concerned about Slade's surgery. She continued to ask me a lot of questions. As we were getting ready this morning, she said kept telling him to be brave. When I told her that he would have a bandaid on his weeny (sorry for the terminology but that's what we call it), she got teary eyed. She said, "I don't want my brother to have a bandaid. I don't want him to have surgery." I wanted to say, "Me too!" But I didn't, I assured her that he would be just fine. Talk about ripping my heart out. I became even more anxious. (I guess it appears as though I am an anxious person)

(Side Note...Slade was born with hypospadius-pee hole on the bottom of his weeny vs. the tip. They were "re-routing" him and then finishing with his circumcision...great terminolgy)

I thought that I would be a pro at this, but I am still not. I kept thinking negative thoughts and then tried to push them away with positive ones.

The way that Taleah reacted melted my heart. She knows way too much about this particular world and she didn't want him to suffer. Talk about love. So sweet.

When we arrived at the hospital, I was on the verge of tears. I was by myself because my mom kept Taleah and Scott was at work. Sandee (mother-in-law) came right as I was checked in. I just kept thinking that this was all too familiar and I shouldn't have to put another child through this. I had a lot of negative things going on. I was trying to be positive though. It helped that we knew a lot of the people. When Scott showed up it put me at ease a little because he could get the scoop from everyone. But, I felt like I had to hold it together because we knew a lot of people. I couldn't be the crazy mom that can't get it together.

It's so dumb, but when the surgeon explained that 1 out of 10 ending up having to have an additional step in the procedure... and giving me the rare thing that can happen....I automatically assumed that would be us. I had so many negative things going through my head. I don't know what my problem was. And I was a nervous wreck. Not sure why... I have done this a time or two.

Everything worked out fine. He did great.

He woke up sad/whiny (just like Taleah). I got puked on. I knew the drill.

Looking back on the day, we are lucky that he was able to get the surgery today when I don't have to leave on Sunday for PCMC. I have to go in to Marsden on Monday to get his stent removed (I am usually at PCMC). My work was flexible of when I get my additional 4 hours that I missed today. Some good things came of this.

I took pictures of his bandaid light, blood pressure cuff, IV, and gown for Taleah. She LOVED it. I think it made her feel normal. She recited the terminology of each picture...over and over again. She kept asking how he did. She is VERY concerned about his bandage. She is being extra careful with him... I think she can tell he is in pain.

Good thing I am funding these hospitals :)

Keeping the job security of the IHC workers (including myself).

I feel a little bit better about things. Taleah is going great right now and enjoying the last half of consolidation. Hoping it continues that way because I don't want extra doctor/hospital visits.

Thinking positive!