Wednesday, September 21, 2011

Day 24

She spent the night at my parents house due to the fact that she doesn't want to come home. Still working on that one. She did ok, other than the fact that she had a meltdown at 1:30am and there was nothing they could do to calm her down. I feel terrible that they had to deal with that. She then slept on the couch and couldn't get comfortable. I think she was in a lot of pain. So sad.

I worked my first full day at work. It was wierd being there, but good. I was exhausted by the end of the day. My mom and dad had both kids. They said Taleah was happy all day. Laughing, joking and smiling (where these pics came from). She was entertained by Tavian and Jace, Tay Tay, Trevy and Kate, Grammy, Gramps and Teeny. Spoiled...I think so.

pics with their "smart glasses"

Maiking cookies... fav thing to do at Grammy's

She was asleep when I got home. When she woke up, she had a meltdown. After my mom walked in the door, she cried for her and stopped. Slight punch to my heart, but at least she was happy. I then asked if she wanted to come home and she freaked out. She cried for about 30 minutes and then I asked if she wanted me to leave and she said, "yes". Another punch to my heart, but I took Slade home and called to check up on her and she was fine. Laughing, smiling, ect. Awesome. She doesn't like me. She used to love me and love being with me. Now she hates being with me and hates being home. I can take it cause it's not about me, it's whatever makes her happy at this point. I keep trying to tell myself it is the steroids. I really hope it is.

Her hair is really starting to thin. I can't decide if I should cut it short and then buzz it when it starts falling out... I still haven't found a way to talk to her about it. It's just so hard because her hair is "her thing". Everyone loves her hair and so does she. It's part of who she is. I am sure she will understand if I could ever find a good way to explain it to her. It sounds so shallow when I read back this paragraph. Hair is nothing in the big scheme of things.

Again, I am overwhelmed at the support. It is so nice to keep reminding myself that there are good people in the world. There really are. It seems like so much is focused on the negative and this has really brought out the positive things in life. Not that I am always positive, but it gives me some additional hope.


  1. Not sure if this will help with the hair thing. But I had a friend that had a daughter that had cancer and when she started losing her hair they shaved it off, but all the boys shaved their heads at the same time. They made it a group thing and then she felt like part of the group. They told her that she was the only girl allowed in the group because she was special and that no other girls were allowed. She loved it!

  2. I am sorry that she is reacting against you! So hard as her mom!! It reminds me of how my kids act after I have babies. The youngest sibling above the baby has always been mad and aggressive at me for a few months. Hopefully it wears off soon! You are doing a great job of taking care of her and keeping her as happy as possible. Definitely let me know if I can ever help with Slade! We would love to help in any way we can. love ya.

  3. Ugh. I'm so sorry. Induction is just awful. It is the steroids. She will warm up to you. Daph would not let us hug or kiss her near the end. She said she didn't like them, didn't like us. It was hard.

    As for hair- Daph's was always a big deal as well. And I couldn't figure out how to tell her. So I started with, "sometimes kids with leukemia lose their hair. It is because they are sick." My policy is to tell her as much of the truth that she can handle. I wasn't going to tell her it was the medicine, cause then there would be no way we would be able to get her to take it. Her hair fell out because of medicine she had to take because of her illness. So essentially it is coming out because of her leukemia. Also, the sometimes part is true. Cause sometimes people don't lose it. It is really rare, but at this point you're just introducing the idea. You don't necessarily have to throw out the idea of being completely bald. Just that she'll lose some hair.

    Whenever I'd find some of Daph's hair in the tub, or throw away a wad of hair after combing it, I would show it to her and tell her in the lightest tone I could muster, "Look, some of your hair came out from the leukemia. Ucky. We don't want hair everywhere. Lets throw it away." I made sure she realized it was happening, but didn't make a big deal about it.

    Cutting Daph's hair the first time was probably harder than actually losing it. Cause by the time she'd lost it she'd seen tons of other kids without hair, had grown used to all the other life changes, and was utterly sick of finding hair everywhere. It also helped that I cut mine with her. I wasn't going to buzz mine, though and I knew that having the men/boys in her life do it wouldn't help, cause she was so worried about not being a girl anyway. But that is just Daph. There are some books out there you could try. And I'll get the one I'm working on ASAP.

    Gosh, I'm just so sorry. Cancer sucks.

    This may sound creepy to some, but before too much of Daph's hair fell out- when it still looked like her hair- I cut it so I could keep it. I wanted to keep that part of her to remember that girl. These kids change, and become just so amazing. But you do mourn the loss of their innocence. That's part of what I did to mourn, I guess. I cut mine as well and we put them in shadow boxes and hung them in the bathroom. Sometimes she'd cry cause she missed her hair (after it had completely fallen out). I'd take her to the shadowbox and show her that it was still there. It helped her feel better. It worked for us.

    Good luck, and please let me know if you need anything I can possibly help with!

  4. I really think you should think about cold cap treatment for people undergoing chemo. I read on Rapunzel project about the treatment. It is very interesting please check it out. I wish I could do more to help you. She doesn't hate you. She loves you. You are a wonderful mother. Please don't get discouraged. I am praying for you and your family and asked my church to pray for you as well. I will pray for you and taleah. Good luck!

  5. Her cheeks are so cute tosh! U are amazing! hang in there, she will appreciate everything u are doing for her when she can understand it all herself. Until then, just keep reminding yourself she loves you!

  6. First off let me just say I have loved following your journey and getting a little piece of your family, which I haven't had the opportunity of getting to know yet. She us so strong and you are doing great! I cant believe those cheeks haha! looks like mine! Haha

    I think she will understand the hair part if you point it out in the other kids at the hospital.. then explain her hair will fall out too but will come back again later! Then buy her some cute head bands with the bows & flowers! I understand your fear of her hair loss even though its NOTHING compared.. but its like that's what "publishes" her as sick. It'll be hard to deal with. It's all so fast :(