Friday, 13 July 2012

Day 20 and 21

Ya, we skipped a day. Austin hasn't been feeling well and so I have been staying home with him and the CRAZY dog. Neither of us felt like blogging. 

Yesterday I had a bit of a break down and it was nice to be able to cry and just let it out since I was home in my own space. I feel so good about things most of the time, but the reality is my daughter is sick and fighting for her life. What is getting to me now is that she still has such a long road a head of her. She keeps asking if we can have a swim party and I hate telling her that it will be a LONG time before we are having a swim party. I don't even know when she will be able to get her broviac out, let alone be near enough people to have a swim party, or be in a germy pool.  

Yesterday Brady's mom spent the morning with Millie since I was home with Austin. I didn't want to risk bring something to her. Brady was able to come be with her after his lunch meeting and she did well. Her ANC was still 100, but today it's back up to 200! Hopefully it won't dip again and we can start moving on with this.

Millie needs platelets today and blood, I know I have said it before, but I am very grateful for those that donate. Her Uncle Adam sent her a picture of him donating the other day and it made Millie smile. She knows that she wouldn't get the blood and care she needs if not for those willing to donate.

Millie also got a surprise visit from her swim teacher Raelene and her daughter, Kelcee. I am so glad that they showed up. Millie has been a little off all day and that gave her something to focus on. Tonight before she fell asleep she had tears in her eyes and asked me if I've ever felt different. She said, "I know we are all different, but I mean REALLY different".  My sweet sweet baby. She talked a lot about how she feels forgotten. Adults come visit all the time, but it's hard to be a kid without other kids to goof around with. She also told me how sad it made her when her friend from school emailed and said they weren't playing army anymore. She felt that if they could move on from a game that they all loved, then why wouldn't they move on from her too. "It's not like I'm around" she said.  She then told me how sad it made her that her friends from school don't visit. She only hears from one of them on a regular basis.  I know people are busy and have their own life's going on, but it's difficult for me to have no control over who calls, who sends emails, who visits, and who doesn't.  It's not up to me and I can't make it better.

The princess walk was so good for me so actually get to see everyone and not just hear about everyone out there, but she doesn't get to experience any of that. For her she can't leave this room, she has no idea how many of you love her. If someone says, ya we'll come visit and they don't she notices. This is her reality. Living in a hospital room. She can't even open the door to peek out and say HI to those walking by. It reminds me of how she compared her room here to Rapunzel's Tower. She's trapped and it's starting to really take it's toll.  She just needs to sit and play barbies with someone who actually wants to be playing barbies. It's such a simple thing for a "normal" child, but for her it changes her whole perspective. Playing barbies means she is a kid, not a cancer kid.

One day Amelia will be able to look back on this experience and realize how truly amazing her support system has been. She has been blessed. We all have.


alysonedmunds said...

Who can visit her? I'm just curious ...does it have to be family? Can the visitors actually come in the room to play with her, or do they just see each other thru the window...? I know u don't know me, but I grew up with brady and his fam in centerville, I read every post u put on this blog, and think about and pray for millie and your family frequently. ...and I would LOVE to come visit millie and play dolls with her... I work at primary childrens and it would be so easy for me to just stop by sometime while I'm up there...anyway, if millie wants a new friend let me know and I would be honored:)
Alyson edmunds

Anonymous said...

My prayers go out to Millie and all of you! I have a 6 year-old son and cannot imagine what it must be like being confined to a hospital room for so long! My son would like to send something to Millie, "to make her happy" in his own words.

You can email me at to let me know if that is okay and where to send it.

God bless,

Molly Reynolds
Lenexa, KS

Piano Mom said...

I wish my 6 year old could come visit. I know how hard it is! Erin was younger than Millie, but I could tell she felt those same things. Looking at her now, she is so capable of having adult conversations with other adults, in so many ways she is leaps and bounds more mature than kids her age. She also developed the most amazing imagination living all those days in isolation. She sings and talks to herself all day long. My other kids need to be entertained, but Erin keeps herself entertained. It's all a mixed blessing.

Those long lonely days really suck. Have you ever seen Bill Murry in "Groundhog Day?" That is the ONLY way I can help someone understand. He lives the same day over and over again. It's like that in isolation in ICS - you just re-live the same day over and over and over and over. It's what you do with those days that really counts, of course, you guys are doing the best you can. It's hard that she doesn't have the friend support she needs, I remember Brielle feeling the exact same way. It's like people forget about you, but really they don't, they just are living life and moving on, while poor Millie's life just sits still in that little room. It is so hard!!! You guys are close.

Anonymous said...

Hi! My daughter and I have been following Millie's blog since her princess walk. We would also like to send Millie something to the hospital. If you could email me the address to send it to. My email is