Wednesday, June 22, 2011

4th Chemo Day

Today was Wednesday again and Jaylie had chemo again. We gave her the anti anxiety medication and she really did great this time. I tried to turn it into a fun game and told her to surprise Nurse Karen by being so brave and not crying at all. It helped! She still did not want to do it and got scared, but it was the best she has been yet, so that's good. Karen always asks Jaylie if she wants to help push the medication from the syringe into the tubing hanging out of her port and Jaylie never wants to. Today she did it twice and seemed to have fun doing it! That is progress! She gets her blood drawn every chemo day too and they do a full work up on it. She even helped put her blood from the syringe into a tube. She held the tube afterwards and asked if she could take it home. Funny girl! Hopefully soon she will be all used to this  and will be fine with it all. Today was definitely the best so far. We had a photographer come with us today and take some pictures getting the chemo and then she came to radiation too. She did family pictures of us on Monday also, so when I get those back I will post them. She was great and so sweet to do this for us. I will talk more about her later when I get the pictures.

Jaylie is still loving her hair! I am so impressed with her. She does not like to wear hats, scarves, or bandanas. I put one on her everyday and she will wear them outside because she knows the sun should not get on her head but the second we walk through a door, she is ripping them off. They look so cute on her too so I try to encourage her to wear them, but they start bothering her after a while and they make her hot sometimes. I love her to wear them, but at this point I will do what makes her happy. I am just so thankful that she likes her hair. It is hard to see her like this, a constant reminder of her cancer, but it makes it easier knowing she is ok with it. It would be a lot worse if she always talked about missing her hair or that she wasn't pretty anymore. I am so glad we don't have to deal with that. We are really being so blessed in so many ways, its amazing. Jaylie is one special little angel.

She has been more tired this week. I noticed it a little bit on Monday and then she was quite tired on Tuesday. I had never seen her so tired as she was that day. Today was pretty good, I can tell she doesn't quite have her same energy level as before, but it is still pretty good. I am really amazed at how much energy she has. They say she will become more tired everyday from here on out and even after radiation is finished, she will feel the effects for a couple weeks after. We are halfway done today. We have 14 more treatments. Her last day of radiation is Wednesday, July 13th. Then she will have 5 weeks break to recover and hopefully gain some weight, then her real chemo rounds will start. I am not looking forward to that. She is still not eating much and has been gradually losing weight. We are lucky if we can get her to eat 3 bites of something. They goal is 10 bites, but they usually doesn't happen. Her taste buds are all out of wack. She had watermelon (her fav) the other day and she said it tasted like pepper. Poor girl, I don't blame her for not wanting to eat. She doesn't have an appetite and then everything tastes different and weird. They really don't want her losing weight right now because when the real chemo starts she will lose weight, so they are wanting her weight to stay up. They prescribed an appetite stimulant medication for her. I gave her one dose before dinner and I didn't notice a difference. I forgot to give her the zofran for her nausea today, so that maybe played a role in it. I made her take a bite of broccoli and she chewed it for a while and then threw it up. I felt bad for making her eat it because I think it triggered her throw up. I usually don't forget to give her her medicines. I had it all ready in the syringe and everything and then forgot about it. She is doing really well with the nausea if I give her the zofran before radiation. She is still amazing during radiation, we are so proud of her.

When the check her blood they look at a few different things, one is the ANC, which stands for Absolute Neutrophil Count. The ANC is the real or actual number of white blood cells that a patient has to fight an infection.  Hers has been dropping every week but has stayed above the normal number (1500), but today it was just below normal (1470). It will probably keep dropping, but it is not too bad yet. During the chemo rounds that will come after radiation, it will sometimes get down to zero. So we will take that number now :)

Thank you for all the prayers and support from everybody. We really feel the prayers working and are being blessed in so many ways. Thank you! 

1 comment:

  1. Oh, what a brave girl she is!! You are such a good mom to help make a little fun out of these crazy appointments. Too funny she wanted to take the blood home! She is such a hoot! :)

    But, I hate that she is feeling more tired and losing energy these days. I hate that more and more you are seeing the real affects of this awful disease. I hate it. I hate that she has it. I hate all that you guys have to do every appointment. (yes, I'm bawling as I type). But, one thing I know is that you guys are strong. Look at how far you've come already?!
    Look at that miracle child who is staying absolutely still for these radiation treatments? I'm still reeling she's been doing as well as she has!!!?!

    I love you all so much and just live for these updates! I never want to bug you guys and make you feel like you have to rehash details for me---so I just am so grateful you are doing these updates.

    Lots and lots and lots of love. Give that little Jaylie the biggest squeeze ever from me. :) Hugs to all of you.
    love melis