39 days

(sorry if pictures are cut off or spacing is strange, blogger is acting up on me)

I have been avoiding blogging like the plague. I haven't wanted to face taking the time to actually sit down, and write about what it happening. I have to think to write and thinking right now is no good for me. I just need to DO, once we are finished then I may have my breakdown, but not now. The past couple months have gone by so fast, but so very slow at the same time. Part of me can't believe we already receiving the last chemo of her second round, and the other part feels like all of this is never going to end.

I am so behind that I think I will focus on our first stay for this post and break it up in sections from there. This was the longest 39 days of my life. Every single one of us felt like it would never come to an end and although we kept telling Millie that it would and we'd be home before she knew it, it felt like a life time. The last week or so when I would leave the room I would peek in the window and Millie would start bawling. I could hear hear crying and hear her fears of never being able to leave. Amelia doesn't like to talk about how she is feeling so sometimes when we know she needs a minute to cry I will politely exit the room and give her some space. Amelia is a 21 year old woman in a 6 year old body and she doesn't want others to share in her pain most of the time. As her mother it's heart breaking. I want to hold her and let her cry on my shoulder. I can hear my dad saying, "now you know how we feel". When I'm upset I just want to be left alone, maybe that's how we all are. Anyway, I'm rambling. Back to the subject... Millie did wonderful in terms of her chemo. She received some nasty drugs and her body in terms of side effects handled them extremely well. Other then waiting and waiting and waiting for her counts to recover we didn't see too many side effects.

Amelia had so many supporters through this first month that I'm not sure how to even thank you all, but to say Thank You. If there is any good in this nightmare it's how much love we feel from everyone around us. It's overwhelming and we are grateful for everyone single one of you.

One of Millie's special visitors was princess Ariel. Thank you Ariel! You made Amelia feel like she was the most important little girl in the world. She treasures the shell you gave her and listens to the ocean in it when she needs to get away from it all.

Another awesome experience we had was how many people supported Amelia in shaving their heads or donating their hair to Locks Of Love. One of Brady's great friends, Jeremy Wilkins, held a Head Shaving event through facebook. We were shocked with how many of you shaved your head, or your child's. Every single picture Millie saw put a smile on her face. I know shaving your head or cutting off your long hair is a big deal and it meant the world to her. Some of her cousins came up to the hospital and let Millie join in the fun.

Uncle Roscoe and Cyndell. GO GIRL!



                                                                          Lilly's Turn


Now Jager

Austin wanted nothing to do with getting his hair cut. He was hysterical about Brady and Millie shaving theirs so I decided to let him be for a couple days. Once he said YES I went for it.

Austin Before:

Yes, he is smiling in the picture but once I started cutting 

he lost it! He's hair is crazy! There are still some random 

long pieces. Oh well. :)

The horrible, terrible, no good, very bad day....

(This section was written by Brady)  Millie had been having stomach pains for a few days and they'd been severe.  It reminded us of the kidney stones that she had recently had and it was not fun to see her in pain like this.  They decided to send her down for an ultrasound, and since it was a Saturday I was there with her.  The ultrasound technician looked concerned.  And when I asked him what it was, he said "you'll get your official diagnosis in a minute, but it appears to be an intussusception.  The radiologist came in and instantly said, that it was a textbook intussusception.  The technician hadn't said a word to the radiologist about it, so I figure it had to be right.  Explanation of intussusception

I'll try to be brief about this, but it was a complicated day.  Typically, an intussusception can be fixed fairly easily, but because Millie had no immune system, they felt it was too risky.  They called in the surgeon, our oncologist, and a number of other experts, and everyone agreed that the best option for her was to go in surgically and fix it.  If not treated, an intussusception is extremely dangerous, and they were very worried about complications.  The surgery would be very simple, but in her condition, any infection that she caught during the surgery would be very serious.  To make 100% sure that they were making the right decision, the doctors had Millie get a CT scan with contrast.  It confirmed the diagnosis.

They wheeled her back, and Amanda and I were more afraid than we'd been in a very long time.  My parents came up, and we all went to the cafeteria to try to take our minds off things for a few minutes.  When we went up to the surgery waiting room (which was totally empty because it was a Saturday), we were surprised to find out the surgeon was already looking for us.  Things should have just been starting.

He explained that once he got inside, it was clearly not an intussusception, but an inflamed colon.  I was immediately relieved.  Amanda, on the other hand, was very upset that Millie had undergone surgery, which could pose very serious complications, for no reason.  

Dr. Barnette, one of our beloved oncologists, came up to visit us in our room that night.  He walked in, smiled ear to ear, and started laughing.  He had been so worried about her all day long, and he was ecstatic to see her up in her room and stable.  

He said that with an ultrasound they have less than 5% false positive identification of intussusception, and with a CT scan, less than 1%.  While we hate that she had to go through a surgery that she didn't need, we're so happy that everything went smoothly.  Had the diagnosis been correct and we had waited on the surgery, it would have been very bad, so although the surgery wasn't needed in the end, it was definitely the right decision.  Just another time we feel so blessed to have so many people praying for us. We know that we witnessed a miracle that day. 

Millie still had extremely low counts, but we had had enough of being trapped in her tiny room so I left her escape for a bit and ride bikes with her brother in the halls. We stayed in the ICS unit to help keep her safe and healthy. Both Millie and Austin thought it was hilarious to crash into their nana. 

Goodbye room 4403! We are going home!