Bedhead

This was last weekend. Millie was so sick and tuckered out. All she wanted to do was lay on the couch.

These were 1 of the many days this past couple weeks we have been at the hospital. I love looking at these pictures. Not because Millie was sick, but because even though she is sick she still has a smile on her face. She is one strong cookie. I also LOVE LOVE LOVE her bedhead. It makes me smile :)

Holding her fists up to show cancer who's boss.

Goofing around with Dr. Barnette

Millie had her blood drawn yesterday morning and I got the call that her ANC has dropped again. It's now 700 from 1000. Her liver enzymes are continuing to come down, which is great, but they are still too high to start chemo.

Millie has her regular clinic appointment on Thursday and they will retest her then. As for now we will enjoy the chemo break.

Millie Millie

I got the call from Millie's doc Friday late afternoon. Her ANC has come back up to 1000, Phew. Her liver seems to be on the mend as well. Her enzymes are coming down but they are still too high to start chemo so they will retest again on Monday.

At this point they are assuming that it was the chemo causing the problem so when they do start her back on it, it will be a gradually process.

Thank you all so much for your prayers and your support.

Millie Updates From The Past Week

I have been sending emails to my family letting them know what's going on with Millie but I haven't wanted to blog. I decided instead of rewriting everything I would just post the emails so you all can be updated. I am so grateful for all the calls, emails, texts, and prayers that have come are way. I also posted at the bottom an update on today if you have already received the emails.

email 1: Millie Update from last night: (Monday, March 21 @ 7:00pm)

On Friday they said that there was nothing more they could do and that it would just be a waiting game. With Millie coming off ALL chemo her diarrhea and liver enzymes should all get better. Brady also got a root cancel and when I was talking to Dani (cancer mom that lives in St. George)about how frustrated I was, she said that we should come down and have Ashton (her husband) do Brady's crown. He would only charge us lab fees which would safe us like $400. We found out from Dani Friday, late afternoon that this past weekend would be the best since Ashton has a lot going on the next couple weekends. Millie's doctors gave her the ok to go and we actually thought it would be a nice break for Millie. She loves it there and it would be a nice change, plus they said they can do nothing more for her.

She did great all weekend. She got random cramping only like 3 times where before it was pretty frequent. After Brady got his tooth fixed Saturday I finally got a hold of the On-call doc and she said that all Millie's stool samples came back negative (which is good). This meant that it was her liver and 6MP that was causing the diarrhea and not a bacteria. She only got diarrhea twice while we were gone, so things were looking better. Last night around 9:00 pm she started screaming about her stomach. 2 hours later she started throwing up like crazy and was screaming in pain again. We decided to take her to the ER and they knew nothing, like always. They didn't even tell Brady what her counts were, they just let her go after 6 hours and $200.

I called the clinic today (March 21) and Dr Verma is worried. The results from last night said that her ANC dropped from 1800 to 700 and her ALT went from 997 to 1157, but her AST dropped from 557 to 457. They want her to come back to clinic to run more tests. Dr. Verma is upset about her levels and doesn't understand why the ER did NOTHING. They didn't even give her fluids, which would help the liver. Dr. Barnette, our Oncologist isn't there today so they are making us wait until tomorrow unless something else happens today and then we will head up.

Cancer Sucks.

Please keep Miss Millie in your prayers

Love,
Amanda


email #2 (Tuesday, March 22)

Millie had more blood and stool tests today. Everything has come back negative. What does this mean? Well I don't really know. It would be unusual for her chemo to suddenly be effecting her liver like this, but there is the possibility that her little body has just had enough. They can't seem to find a reason. Her liver enzymes have come down. Her ALT is 751 and her AST is 212. They are still both high, but better. Her weight is stable, she didn't gain, but she didn't lose :). Her ANC has dropped again which is a little strange since she is off her chemo. It is now at 600, Friday it was 1800, Sunday night 700.

The game plan is to continue keeping her off her chemo until her levels are normal again and let her liver recover. We will re-test everything on Friday. Thankfully Home Healthcare is coming so we won't have to spend another day in the hospital.

Thank you all so much for your prayers. We love you and our grateful for you.

Love,
Amanda

Today (not an email): This morning Millie is doing well, but we are all exhausted. Last night she was up all night in pain and with an upset stomach. This is the 3rd time this week we have had to shower her in the middle of the night. She is breaking my heart. I hate seeing her in this pain and I hate that we have hit 3 weeks of this none sense. 3 weeks! I called clinic again asking what we can do for pain but I haven't heard back yet. It's all so strange because she'll be fine one second and then horribly sick the next. What is going on? I really can't wait till tomorrow. I just want to know what all her blood and liver counts are.

Thank you everyone for your support.

What The Heck

Millie has had diarrhea on and off for a little over 2 weeks. NOT COOL. I knew it wasn't that she was sick with a bug because it was very random as to when her stomach would get upset. It seemed to have nothing to do with what she ate, or when. She would just randomly be sprinting to the bathroom and then she'd go a day without being sick at all. The poor girl was up all night Thursday night and I had had enough so I insisted she be seen at clinic. I had called several times before this, but I felt like they were treating me like I was a bit nuts. It's only diarrhea. Well that's not all it was. After the head nurse in the Oncology Clinic saw Millie they knew something wasn't right. They pumped her full of fluids, took blood and stool samples, and we waited. Millie's preliminary blood counts started coming back and everything was looking good. Our nurse Mindy (who is one of my favs), thought that she would be needing a blood transfusion for sure but her hermatocrit was great. Then we finally got her ANC and it too was great.

Then they can rushing back in and told me to stop all chemotherapy immediately. Amelia's liver enzymes were off the chart. Her poor little body is so out of whack. Just when we think she is in the clear and we are on the "easy" stage something like this happens. I am sick that Millie has been in so much pain over the past two weeks and that everything we were doing for her was making it worse. She has Zofran for nausea and it's extremely hard on the liver. Man, sometimes I wonder what in the heck I'm doing. Being a mother is exhausting. I just want to help her and take away all her pain. I hate that she has to deal with such horrible side effects. She even lost 3 pounds in 2 weeks. On a tiny little body like hers it's A LOT of weight. That's actually one of the reasons I insisted on them seeing her. She was getting way to skinny.

Now it's a waiting game. Millie will get re-tested on Friday and hopefully we will have some more answers as to what's going on with her.

Millie's Current Counts vs. 2 Weeks Ago

Height: 107.2 cm vs. 107.2 cm

Weight: 16.0 kg vs. 17.3 kg, ( 3 pound weight loss)

ANC: 1800 vs 1000

Liver Enzymes:

ALT: normal range 10-25

Millie's 997

AST: normal range 15-50

Millie's 574

Tea and Crumpets

Amelia was invited to a Tea Party this past Wednesday and once again there was magic in the air. I know it sounds cheesy, but it's the truth. There are no words to say how much I love Make-A-Wish. There are a couple charities that have done a tremendous amount for us and one of those is Make-A-Wish. They are outstanding and I will forever hold what they have done for Amelia close to my heart.

The 1st thing Millie did when she got to the party was meet Belle.

Anxiously waiting for her makeup to get done.

After she was all done up Amelia was formally introduced into the party. She got to walk down the red carpet and she had glitter sprinkled in her hair. When Millie got home and was telling Brady about the party she said, "Dad they pronounced me by my name and then I got to walk down the red carpet all by myself. At first I was scared and nervous, but when I was done it was so fun I wanted to do it again".

Millie knows her Grandma Jager LOVES a good tea party so she invited her to be her guest.

Dancing with the Prince

There were the most amazing high school students there hosting the party. They were all so sweet with the kids. Millie made a new friend named Clair, she was amazing and made Amelia feel incredibly special.

Clair and Millie with the whole group.

I wish you could see Millie better in this picture. She is so cute! She has her sweet, little hands up to her mouth giggling. Love Her.

Even Austin, our little prince, got to come.

Clinic March 2011

A month comes around so fast. I can't believe it was time for Millie to head back to the hospital again. This was a new round so Millie had to get a Lumbar Puncture. We all hate when it's Lumbar Puncture time. The Methotrexate they inject into her spinal fluid has horrible side effects, but it doesn't matter because the poison is keeping her cancer away. I have to try really hard when I leave her back there by herself not to let words like brain damage consume my mind and focus on the positive while I wait for her to wake up from anesthesia.

Millie getting her measurements and vitals done with Pam

I don't have very many shots of Millie with her PORT accessed so I wanted to post this, I will have to get a better picture next time.

Millie plays up until the very last second when she's out cold. In the picture with her is the Anesthesiologist, and sitting in the chair is her Oncologist, Doctor Barnette. We Love Him.

Millie was really sick this time after chemo. She threw up the second we got home. It breaks my heart to see her this way, but I am so proud of her. You can tell in her hair pictures that she wasn't feeling super hot.

Clinic Stats:

Height: 107.2 cm

Weight: 17.3 kg

ANC: 1000

(Amelia's ANC is right where they like it so her home chemo dose stayed the same. I am so glad they didn't up it!)

Millie did awesome at clinic and waking up from her anesthesia. I'm proud of you baby girl!

Come Walk

Join us along with our SILLY MILLIE in our efforts to support CureSearch for

Children's Cancer Research!

We are so excited that CureSearch is holding their 1st annual 5k walk in Utah this year. We LOVE CureSearch and our family supports them in their effects 100%. Our government is failing our children when it comes to funding childhood cancer research and CureSearch has stepped in to help fill the void.

I have pledged to walk this 5k with my family and friends and I am hoping you will join us at the race and in raising money for this devastating disease. It only costs $10 for people over the age of 15 to walk, under that are FREE!

We will be participating in the CureSearch for Children’s Cancer in Salt Lake City, UT to take place on July 9, 2011 in Liberty Park. The money we raise will fund and support collaborative research to find a cure for all cancers affecting children. I need your support, so please join my team, register as an individual or make a donation to CureSearch for Children’s Cancer on AMELIA'S behalf. Together, we will Reach the Day when every child with cancer is guaranteed a cure.

We Love You All and Are Grateful For Your Continued Support

To Join Team Amelia go here:

http://www.curesearchwalk.org/faf/search/searchTeamPart.asp?ievent=452894&lis=1&kntae452894=B6630F27D4934EEF9686E8527E1965BF&team=4089191

Austin is 18 Months!

CRAZY MAN!

I could not get him to let me take his picture. He was seriously being a pain, but that's just Austin. That boy is already his own man and you don't tell him what to do.

Let me tell you a little about him:

• He LOVES his daddy and cries every morning when Brady leaves for work and when he hears the car pull up at night he runs to the door and cries again until he's in his daddy's arms.
• His sister can always make him giggle, but they fight over everything.
• He has a seriously good pout face.
• He finally got some teeth at 16 months! He has 2 bottom and his front teeth, with more showing signs of popping in.
• Once he decided to walk he has been a mad man. He has been able to walk since he was around 1, but Austin does what Austin wants and he wasn't about to walk on a regular basis until he decided he wanted to.
• We have to lock the front door because he LOVES to be outside and he also LOVES to run straight for the road.
• He is talking a lot more. He says, ball, dad, mam, bottle, kittie, 1 2 3, hi, bye, ni-night, meow, shoe, outside, boo, ouch, and NO!
• He likes to dance with Millie, which is him stamping his feet really fast.
• He jabbers all day long and thinks he's making sense.
• His baby blues sparkle when he's happy and when he's being mischievous.
• He refuses to keep his socks on.
• Changing is diaper is like wrestling an alligator.
• He can charm the socks off anyone.
• He will not sit down to do anything longer then about 3 minutes.
• He takes things out of the cupboards all day long. His favorites are Tupperware, rags, and my pans.
• Lids are the one thing that may keep him busy for a second. He likes to take them on and off.
• He always checks to make sure I'm watching him before he does anything "cute."
• He likes to poke people with a stick or something like that and in a high pitched voice say, "boop."
• He takes things out of the garbage can all the time, it's SICK.
• He puts anybody's shoes on his hands and thinks he's really funny.
• He is very curious and I love to watch his facial expression when he's checking something new out.
• When he sees an animal he opens his mouth really big and gets extremely excited.

Austin is giving me a run for my money, but man do I love that little guy!