Wednesday, May 16, 2012

Maintenance- 1st Month

Life without steroids is so great. I realize that they do great things, but what a difference in behavior.
I would be lying if I said she was super happy and so obedient. I feel like she is having major behavioral issues and it is hard to know what is "normal" and what is a result from her special cancer treatment. We are really trying to crack down and get it under control since life is becoming more "normal". She seems to have such a temper, throw fits over EVERYTHING, attitude central, and says things that I thought only teenagers said. She is much older than she should be. Partly because cancer made her grow up and has stolen some of her innocence and because she is always around my teenage sisters. Some days I feel like I am constantly disciplining and it gets really old.

Some days she is super fun. Her personality is bigger than most of you can probably imagine. Seriously. I wouldn't trade it though.
She did these poses herself. Faces and all. What a nut.

She loves her cousin Brielle (who has PKU) and they have such a sweet bond. They always talk about how they are both special and have things that make them different. If only I could record those conversations.

Mother's Day was a great day (for the most part). Actually, I spent a lot of it feeling sorry for myself and really wanting to cry for so many reasons. The kids were extra naughty (lack of regular naps) and needy. My house was a mess. Taleah was so high maintenance and I felt like a failure as a mother. It sounds dumb, but that's how I felt. I also wanted to cry because I was so grateful to have these two kids and especially all that Taleah has been through. I was feeling so blessed to have here. Being a part of this cancer mom facebook group has opened my eyes. Listening to these moms talk about losing their child in the next few weeks or how they have already lost them to cancer is almost more than I can bare. It makes Taleah's journey seem like nothing. Anyways, I am so grateful to be their mom and for being chosen/trusted to raise Taleah and help take care of her.

One of our/her highlights of Sunday was talking to Uncle Natey AKA Elder Stevenson. He was so cute and Taleah couldn't get enough. She sat in front of one of the computers and watched everyone talk for 2 1/2 hours. Seriously. She loved it!

She has also been spending a lot of time outside. I am so glad that her port allows her to do that. What would we do without family!?

Now that she has most of her energy back... these two are always at it. Good or bad. Love/Fight.... it's all they do. Again, trying my best as a mom to teach them the right way to interact and it is SO hard! They are pretty cute though.

We had our first appointment/CBC.
ANC 1300
Hct 33
Plts 274
WBC 2.5
(those are really great numbers... the WBC is a little low)
They say it takes a good 3 months to get adjusted and let their little bodies heal. They will not adjust her meds until 3 months of this. I am fine with that. It seems like it is doing it's job but not knocking her too low.
We went and saw Nurse Heather and Dr. Marsden. Taleah was so excited. She actually cheered when I told her the night before that Nurse Jeanette was coming to access her port and then she could go to the Dr. Yes, she cheered. She couldn't wait. Sad right!?
She looks great and numbers are great. Usually, we would have done chemo and started steroids again BUT the study is not that. Scott and I never said, " OK, this is it. It's our decision." There wasn't a moment that we knew this was it.We both talked on and off and felt pretty good about staying with the study. Of course, lots of prayers and fasting played a part. It was heartbreaking to hear from other moms about the side effects their kids are dealing with because of the chemo and steroids (which they take so often). I feel like the timing of their stories played a role in our decision. That is the purpose of the study... to prove these kids don't need as much of it to cure them. The side effects are brutal and something they will live wtith forever. Obviously, the fact that they live is great but if we can reduce the side effects that would be even better. Most importantly, we both felt peace about our decision. I am still VERY nervous and hope we made the right choice. I can't even think about what would happen if she relapsed and it was "my fault". (there would really be NO way to even prove that) Ahhh...That's just the fear in me talking.
We are sticking with the study and we will embrace it. No steroids or chemo this week... just a check up and CBC. Live it up right!? 

Friday, May 4, 2012

 Being off steroids has made a huge difference. She is pretty much her normal self. Still having tantrums but I am hoping that is normal for a 3 yr old. Her little personality is really showing through. I am trying to enjoy every minute of it!

 These two still get along pretty well. They are great little buddies but they sure can fight. Again, sometimes I want to blame the steroids but I am afraid it is just normal sibling behavior.
 There were a few times that she would complain and I could tell she didn't feel well. She only asks for someone to sleep with her when she is not feeling well.
 I didn't really talk to Dr. Barnette about letting her go to church, gymnastics, ect. He is usually pretty leniant if he thinks their counts are pretty good. Nursery has been a little bit scary but I usually go in and be the germ monitor. Luckily it is a sernior nursery. She is LOVING cheer, gymnastics and being social. I think it really makes all the difference. She is getting her muscle back and coordination. I think it is the best thing for her. Oh and that cute little bum.

 Swimming and enjoying the outdoors too. She loves swimming and Slade doesn't. Should make for an interesting summer!

 The Monday after the relay she slept until 10am. That never happens. Her temp was low and she was tired. I figured she had a low hematocrit but I was going to watch her and see. She is not due for a blood draw for a few weeks. She ended up getting more energy and I am hoping it was just exhaustion from the weekend.

Sadly, Slade loves having his temp taken. He thinks it is entirely normal. The doctors doesn't scare him either. He actually loves going there.

We are coming up on a decision. It's making me a little nervous. I haven't talked to Dr. Barnette yet. There have been a few things that seem like signs to me, but we still need to sort it out. Still praying and we appreciate all of the prayers and encouragement from all of you. Thank you!!

Relay for Life

 The Relay for Life was such a great experience. We have never been a part of one and we enjoyed every minute. It started with a dinner for the survivors and their caretakers. Delicious. The opening ceromonies followed with releasing the balloons and doves into the sky. Taleah and Chase were the prince and princess. They led the survivors in the walk. It was quite emotional. I was fighting back the tears the entire time! Taleah was the youngest cancer survivor there and then Chase was the next youngest. Luckily, Dani invited us and did all of the work for "our team". It was pretty much her team because they did it all. They even set up an extra tent where we ended up sleeping (it was not part of our plan). They pretty much rock. Thanks Prince family!

 Taleah was in heaven with all of the kids to play with. Slade made it a little challenging so we only had him there for a couple of hours.
 Chloe stopped by for some fun. They had no problem dancing in the middle of the field with all of the people.
 The lumanaries were awesome. Taleah had a great time decorating them. Her favorites were the ones for Chase and then for the cancer cuties. Pretty special.
 This was her first time sleeping in a tent. We brought her little air matress and she really slept great. Well, she was up doing zumba at midnight and playing hard until 1am. Yep, I said 1am. Crazy mom. She had a blast though. When she woke up in the morning, she asked me when the race for her and Chase was going to start. Ha. Poor girl thinks everything is about her and that it's totally normal.
We loved being a part of it. We are excited for our curesearch team in September. Curesearch donates 100% of their proceeds for childhood cancer research. Relay for Life is great but they only donate 3-5% to childhood cancer. I do agree that research for all cancers is important, but right now my focus is finding a cure for childhood cancers.
If you want to be a part of our curesearch team, go to It costs $10 and we will have an awesome team.