Sunday, 29 July 2012

Friday, 27 July 2012

Day 30 something

Home.  Home brings such a mix of emotions. Of course we are beyond happy and grateful to be here, but unless you have been in the shoes of a family that has a child with cancer there is no way to understand how difficult it can be as well. I hook up IVs, inject medications, schedule out pills, clean up barf, hold 2 crying babies; one because she is incredibly sick to her stomach, and one because he is sick and tired of being left home with sitters. I try to keep my house clean - up to Bone Marrow Transplant standards and  that is an impossible task with a 2 year old and dog running around.  I spend entire days at the Bone Marrow Clinic when Millie needs transfusions or check-ups, today we were there for 7 hours. There is never enough time for anything, BUT the house is full of crafts, games, spills, giggles, and crumbs. My family is here and the house is being lived in. In a way the mess is a beautiful site.  The last week has been incredibly hard because I was the sickest I have been in, I don't know how long. I had to give Brady instructions on how to do all Millie's IV stuff over the phone since I couldn't be near anyone. It was frustrating and scary. Saturday night was the worst of it and I cried myself to sleep. I was so worried that I could have gotten Millie sick. I don't even know how I got sick, I hadn't been anywhere since we'd been home but the vet. Did I catch the flu at the vet? When you live this life you have to analyze everything. Do I let her go outside without a mask, can she at least see the neighbors puppy for a second, what do we do with our dog, should I make Austin wash his hands again, is it alright if she sits on the grass, did that dish get washed and soaked in bleach before I put her food on it, do I need to steam her toys again... The list goes on. It is stressful to say the least and on top of everything else my house looks like a pharmacy blew up in it. We have bottles and bottles of medications, IV bags, syringes, saline, heparin, needles, prep kits for her broviac, bandages, and more.

Austin is having such a difficult time that the last day I was stuck in my room he sat in my doorway literally all day and watch shows on my tv. He couldn't really even see me since I was in bed and we wouldn't let him in, but he knew I was there and he didn't want to leave my side. He even snuck in at one point and kissed me. He is such a sweet boy and I feel sorry for him. He is so little and doesn't understand. Hopefully we have done enough his last 3 years of life to let him know how important and special he is to us.

Millie has been doing great! What does great mean? Well most the time she is feeling pretty good and able to play for a little while before her body gets too tired. She is eating a little and her docs are starting to taper her off her TPN. We are hoping she will be taken completely off by today, but we have to get her eating a little more first.  She has a ridiculous amount of pills she has to take and we have figured out a routine that helps her not to get too sick and throw them up. Today has been one of the worst days for her stomach pain.  I had to hold her up on the toilet while she was screaming in pain. It's an awful feeling to know there is nothing you can do for your child. The first couple of days her legs were killing her. Her little muscles have been unused for so long I think they were freaking out with how much playing she was doing. Her body seems to be adjusting though. It's normal for her to feel some pain as she is growing new bone marrow. Of course she will ache, but for a bone marrow transplant patient she is once again showing everyone who is boss, and that's Millie. She had clinic last Friday and she need some platelets, but everything else looked good. They thought she'd need blood by Monday so they brought her in again, but she was great. No blood, and no platelets. That's fabulous news, it means her body is starting to make all of these things on their own. We had another appointment today and since she had gone a week without transfusions I wasn't surprised she needed both. It was long and exhausting day.

If I could choose being home or the hospital of course I would choose home 1,000 times over, I am just surprised at how much of an adjustment it has been. I should be use to this as it always takes time to get back on a schedule, but this time has been completely overwhelming. But I can do overwhelming when my family is all under one roof. I can love and snuggle both my kiddos at the same time. I see my husband for more then a few passing moments in the hallway. I have missed him. Being together is something I will never take for granted. I love my family.

Thankfully we have had so much support. When I was sick my mom cleaned and disinfected everything. Poor Brady had to have been more then overwhelmed with everything and then I was on quarantine to top it off so he had to face everything all on his own for a few days. His family has also been amazing. Thank you Kyle, Adam, Andy, and Jeff for helping put Millie's playset together. It was a ton of work and he couldn't have finished it without you and it's finally done! The kids have been enjoying it all night. Nancy also babysat so we could go on a much needed date. Being trapped in the house is taking it's toll on me and I enjoy every free moment I have.

Since I don't have any pictures I thought I would post a video of Millie singing at the hospital. This was one of our final days there. It's not a big show like usual. You can tell her energy is down, but I still love it. Enjoy.

Thursday, 19 July 2012

Day 26: HOME - July 18, 2012

ANC 900 and FREE.

Dr. Barnette has shown so much love for Millie and I am grateful to him. I am happy she was able to tell him goodbye. I know we will see him in passing, but he is no longer Millie's main man since we moved from the Oncology Team to Bone Marrow. We have missed him.

As a going away gift Irish let Millie squirt him with saline. Oh how she giggled. Thank you Irish. 

Millie waited for no one to ring the bell. We were all standing there waiting to hear what to do and she jumped up and got to it.

Ring This Bell
Three Times Real Well
Its Toll To Clearly Say

My Treatments Done
This Course Is Run
Now I Am On My Way

When she was done she asked Brady and I if we would like to ring it with her. 

 Goodbye to all her friends. These people loved and took care of my baby. I owe them everything. Every nurse, every tech, every doctor, every housekeeper, our dietitian, every pharmacist, every therapy dog and owner, every social worker, our music therapist, and countless others all took a part in getting Millie through the last 6 months. These people became my friends and my family away from home. I will miss them. Yes, we will be at the hospital a lot, but hopefully not in ICS, only clinic visits for check-ups and transfusion. I know that's a lot to hope for, but hope and prayers have gotten us this far and I know that they will continue to hold us together to Millie's next big milestone, Day 100.

Bye Beezer and Cheri. You will be joining us soon and we will miss you. 

Bye Amy and Timmie.

 Millie ran the rest of the way out.

Welcome HOME Millie! 
Gold Balloons for Childhood Cancer, Orange for Leukaemia, and Turquoise because it's her favorite. 

Millie wanted to surprise Austin. He had no idea she was coming. When she walked in the room and said, "Hi Austin" he buried his head in the couch first and once he got a grip he buried his head in her lap. He loves her so much and has missed her like crazy. I get teary eyed every time they play together. It's amazing how much Austin has even learned about love in his short life. He does not take his sister for granted. He knows he's lucky to have her and she him.

It wasn't long before Millie's presence had once again filled our empty home.

You are my Miracle Millie. 

Tuesday, 17 July 2012

Day 25 (I think)

Everything is fine, we have just been tired. Millie's ANC is 600 and has been for the last couple days. We are hoping it jumps up again tomorrow so we can stop giving her neupogen. Millie is eating better today and has way more energy then I've seen for awhile. I even got a song and dance today, I will post the video later.

I also have to mention that Rachel Steele is the coolest! Thank you for the amazing comic book you illustrated and wrote for Millie. The finger puppets were so awesome! I know the kids are going to have a blast with them! I will post pictures of that too. Just give me a day or two. Marie, there are no words. Thank you just doesn't cut it.

Thank you so much to everyone! I had gotten a few concerning comments since I wasn't posting and I just want you all to know Millie is fantastic. Tune in tomorrow to see how fantastic.....

Saturday, 14 July 2012


This morning Amelia's nurse walked in, handed me a print out of Millie's blood work, and said, "she officially as an ANC of 500". How amazing is that?!?!  Amelia wasn't awake yet and I tried to wait, but I couldn't. I went and snuggled up to her and whispered in her ear that her ANC was 500. She had the sweetest smile.

Day 22 was the day that both Cousin Sherry and I picked for her engraftment. WE WIN! I just knew I was going to win. ;)  When her doctor came in for rounds they said that they were going to take Millie off her Meropenem, and switch her IV Amphoteriein to an oral anti fungal called, Fluconazole. Tomorrow she will come off her Flagil pill (c-diff antibiotics 3x day). They will retest her for c-diff on Monday and decide then if they can keep her off or if she still needs the Flagil. If we can get her to eat more Millie will also start tapering off her TPN and lipids. HOORAY!

Yesterday was emotionally difficult on Millie and this was just the wonderful news she needed.  As always, thank you for your prayers. I can honestly say that they are making a difference and being heard.  Please keep them coming. The next few months are critical for Millie. If we make it to her day 100 without any hic-ups then we can breath a little more easily once again. 

Brady calculated it out and her day 100 is September 30. It's going to be a big weekend for our family; Millie will turn seven on Sept 28, Sept 29 is the CureSearch Walk, and Sept 30 is day 100! We will be celebrating like crazy and I hope you can join us at Sugar House Park for the annual CureSearch walk where we will party.  

I pray every second of every day that this is Millie's last run with cancer, but the cruel truth is that she could relapse again and this disease NEEDS a cure. I will continue to support CureSearch until the day we can say We Have A Cure. Last year we did a hard push for everyone to come walk with us, but with Millie's Princess run we have decided not to try and fundraise as hard since you have all done so much for us already. I do hope you all have the same passion that I have and will join us anyway. Please sign up for Team Amelia here and come celebrate her birthday and day 100 with us.  Kids are free and adults are only $10.  We love CureSearch because 100% of all the proceeds raised at this walk will go to help find a cure for our Cancer Fighting Cuties, 100%! That is unheard of. 

Please take a minute and watch this video that our fellow cancer friends made. Millie makes a few appearances, as well as her Cancer Fighting Cutie Friends. It's a beautiful tribute to these kids. Watch till the very very end, even after the written words so you can hear Millie's cute giggle. I love that giggle. 

CureSearch Walk Salt Lake City from DHT on Vimeo.

I had to take Millie's picture the second she was awake enough to sit up. My baby engrafted! I will never forget July 14, 2012.

To celebrate we did glitter tattoos.

Cute Cami, Millie's cancer buddy came to visit and the glitter came out again. I wish we'd taken a picture of them when they were done. They were both covered with tattoos.

After Cami left, Millie spent an hour or two in her secret hideout.  We pull the couch out a little to give her some private space.  She sits on blankets and pillows and loves it there.  When she came out, she had a gift bag for Brady.  She had made him an amazing family portrait, a bracelet, and dozens of hand cut snowflakes.   It's amazing that she's always looking for the opportunity to do something for someone else.

 This morning before coming to the hospital, Brady and Austin went for a hike up to Dog Lake.  It's only about 2 miles round trip, but it has a pretty good elevation gain.  With a little rain, it wasn't too hot, and the wildflowers are in full bloom.

Austin loves to go for hikes, but getting him to pose for pictures is tricky.  At this age, Millie would constantly pose in front of things and request to have her picture taken.  Austin has to be bribed.  

He did good and hiked all the way up, and most of the way down.  With a few hundred yards to go he insisted on being carried.  Within a minute he was asleep on Brady's shoulder.  He woke up in the car just long enough to demand the sucker he had been promised and then went to sleep before tasting it.

Austin and Millie also got to see each other for the first time in over a week since Austin had been sick and he  just kissed her and kissed her. It was really sweet and the icing of top of the cake. 

Sigh of relief.

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.

Wednesday, 11 July 2012

Day 19

Today was a great day, even though we started the day off with slightly bad news.  Millie's ANC had been 200 for the past two days, and we were hoping it would go up, but unfortunately it went down to 100.  It's just a temporary setback...

I spent the most of the day with Millie today, as my work is nice enough to let me work from the hospital on Wednesdays.  Hopefully there aren't many more left.

I had a lot of work to do today, so I'm grateful that my mom sat with her while I went to a business lunch, and my sister-in-law Elizabeth for coming by with her sweet baby to keep Millie company while I was working.

Hanging out with Nana.

Showing off the car she made with an old tissue box and other random hospital items.  She keeps herself busy.

My mom brought some more pipe cleaners, and Millie had a lot of fun with them.  Pretty fancy jewelry!

Millie was so excited to spend time with her cousin Eliza.  It really made her day.  She spends so much time up here with adults, being the "big person" and playing with a baby had a great effect on her.  She made Eliza a fancy headpiece. 

 Apparently Elizabeth needed one too.

Austin was feeling a little better today, so Amanda took him to the zoo.  He loves the zoo.  Although his favorite is the lions.  The first thing he wants to do when he gets there is go see the lions.  The only problem is that the zoo here doesn't have lions.  He doesn't seem to believe us and gets a little frustrated that we're holding out on him.  He's a character, as my grandpa would have said.

He got to see the polar bear swimming in the new exhibit, and got to see the grizzlies.  Amanda said they had a great time.

He was so worn out after the zoo that he fell asleep on the floor with Jack.  

Tuesday, 10 July 2012

Day 18

Millie's ANC has held strong. It is still 200. I was expecting it to drop today. She does need platelets, and will probably need blood tomorrow, but she is feeling alright. Right now she is playing with her ZuZu Pet. She made a zipline for her that starts at the door handle and ends at a cord on the ground. It's quite funny. She wanted her ZuZu to have something fun to do while she is making a surprise for me. She's so funny because she is sitting right next to me making flowers out of pipe cleaners, but I'm not suppose to look over. She has everything stretched all over the couch as if I can't see what's happening. I can hear her telling ZuZu that this is the last time she is taking her on the zipline  because she's got to get back to her flowers. She said, "LuLu that's it,I'm done!" 

We got a visit from Rachel Steele today. She couldn't come in Millie's room but it was wonderful to see her. She is such a wonderful example of having cancer and winning. Millie also got the cutest mosaic pony craft from another Cancer Cutie Family. We are so blessed to be surrounded by so many loving people.

Millie ended up being so ornery most of the day and was furious with me for reasons unknown to me. Sometimes I think she is just mad and she has a right to be. If she can't be mad at her mom, then who can she be? I don't mind her taking a little anger out here. She does so well most of the time and I think it's good for her to let some of her other emotions out, because it's so obvious to Brady and I that there is a part of her that's scared, but she doesn't like to show it and I'm worried it will eat at her. Her positive attitude has gotten her through so much, but we all have to cry sometimes. 

Once Brady got there I think she started to cheer up a bit. She really cheered up when her Uncle Adam came by and played with her and Brady forever. Brady said they played a few board games, and then she called kids crew and ordered some specific materials to make puppets out of paper sacks.  During the game, Adam teased her and said "pretty good for a girl," to which she responded, "I'm fighting cancer - I don't think you've ever done anything as great as I have."  That will teach him.

Austin had a horrible day and I hate not being able to be there for him when he needs me. He was so sick with the stomach flu of some sort. He got checked out by his doc and he said that he has seen a lot of that coming through his office. GREAT! It's so hard because it's awful that he has to be sick, but I also have to worry that one of us has taken it up to Millie. Do I need to stay away now that I have been with Austin tonight? I can't be in 2 places at once and I can't take a chance of getting Millie sick. Ugh. 

He was doing better tonight and actually ate for the first time all day, so here's hoping it has passed. 

Monday, 9 July 2012

Day 17- ANC 200!

Okay, so this still does not mean that she engrafted. Her ANC has to be 500 or greater for 2 days in a row for her to officially engraft, but I am so happy! Things are moving in the right direction and I was not expecting her to have an ANC for another week, so this is fabulous news. Sometimes when an ANC goes up for the first time it can drop again the next day or even stay the same for a while so we aren't getting any hopes up, just thankful her body is making some progress.

All of her blood counts look good so we will just be hanging out today. No transfusions necessary. Millie also joined another study, so now she is on 2. This study is the first of it's kind and it will be looking at neutrophil nets in transplant patients. I am so grateful for everyone that has paved the way for Millie to get the treatment she is on and I am happy that we can help in some small way for those that follow after us. Millie even signed her name to the document herself, saying YES, I want to help. So proud of her.

Grandpa Jeff spent the night with Millie and it was so nice to get to see Brady for a second. Thank you Jeff! Thank you also to my mom and Sherry for stepping in and taking Austin today. It is wonderful to know that there is always someone there ready and willing to take over when I'm in a jam.

So far Millie is doing alright. Her stomach is very sick and she is bordering a fever, but we have been able to keep it at bay. This is all very normal with her counts coming in. Her body is trying to figure out what in the world is happening. It's called Engraftment Syndrome. Hopefully this is the worst of it, because I know that once she does engraft we are facing a whole new ball game. I can't wait for the day when there isn't so much worry surrounding every moment of every day. Until then we continue to pray and count our blessings.

Despite the stomach aches she had today, she still had a wonderful day and she was joking around with our nurses and techs. She even showed off a little by doing some sit ups. Go Millie Go!

She's a mean one Mr. Grinch

Showing off her Missing Teeth to Cousin Sherry.

Sunday, 8 July 2012

Day 16

It's been a long time since we've had such a great day at the hospital.  As usual, I spent Sunday at the hospital so that Amanda can spend some time with Austin.  After a long night at the hospital Millie slept in until after 9, and she woke up full of energy.

We spent the whole day coloring, playing games on the iPad, playing board games with my parents who came to visit, singing, and Millie spent a lot of time talking to, singing to, and especially teasing any hospital staff that came into her room.

It was great to see her so happy and full of energy.  She didn't nap at all and was to wound up to go to sleep until around 11.

Here's a picture of Millie playing our favorite game - "Where's my Water."  She's surrounded stuffed entourage.  She's so funny with them.  She got her new Wocket (from Dr. Seuss' "There's a Wocket in my Pocket") that Rachael, who had a bone marrow transplant while Millie was going through chemo.  Her lemur has been her favorite stuffed animal for about two years.  When she gets a new stuffed animal, she always sleeps with it for 2-3 nights so that it won't be scared and so that it will know that she loves it.  Every time, without fail, she takes her lemur aside and explains that she loves him but she needs to take care of the new friend for a few days, but that she'll be back with him soon.

It's such a funny thing, but it shows how sweet and thoughtful she is.  She really does amaze me.

Saturday, 7 July 2012

Day 15

Blogger is giving me a hard time today, so my pictures are out of order and it drives me crazy. Frustration!

The big announcement for today was that Millie's white blood cell count came up a tiny bit, It's 200. Her doctor followed the news by letting me know I shouldn't get my hopes up. Millie could stay at 200 for a long time and her ANC is still 0 but we are moving in the right direction. This also does not mean she engrafted, I want to make sure that's clear. They don't call engraftment until her ANC is rising. 

Millie and I didn't really get movin' until around noon today. She was so sleepy and just wanted to snuggle. She is such a sweet heart.  Once she did get up she started complaining about her tummy right away. Today has not been her best, but she is still a rock star and she managed to whip Cousin Sherry up a portrait while she was visiting. I know I'm her mom but I think it's awesome. 

 Mill had to get platelets, which means benadryl, which means she slept most of the afternoon. Poor Brady is going to have another long night. 

Millie and I also got our NICO shirts. You can read more about NICO and his story here. We love you NICO!

Tonight Millie has been fevering. Brady says they don't seem too concerned, as fevers and bone marrow transplants go hand in hand, but they did take some blood cultures to make sure it isn't anything serious. When I just talked to him they were playing memory with some cards that they made themselves. Yes, it's after midnight and they are playing memory. :)  That's what happens when benadryl is part of her day.  

Well, I wanted to write about Brady and Austin's trip to the ranch, but Austin is crying and since I haven't seen him in a couple days I'm going to a rock him. Goodnight all. 

Day 14 Continued

It's amazing how remembering the details is already difficult and that's exactly why I am trying to write every day. I want to have the experience documented for myself, so that one day when I am not living on auto I can look back at this and actually remember something that happened, especially yesterday. If Millie engrafts on the average day that most cord blood transplants do then she is half way through this. GOOD JOB BABY GIRL! You are still smiling, you are still a goof, you are still a tease, and I am more and more impressed with the person you have already become in 6 years. The way you have handled the past 3 is how I hope to be the rest of my life. How can such a little thing teach me so much? 

Day 14 (July 16) was honestly her best yet. I don't know how she does it, but if any of her doctor's mention that things are catching up with her then she has to prove them wrong. Yesterday she spent the day crafting, teasing our tech, Brek, and hiding things from Andi, our nurse. 

She even lost her 2nd front tooth! It's been ready to come out for awhile, but with everything going on we didn't want to pull it. It fell out while she was brushing her teeth. She was beyond excited! When did she get so big?

Millie has really taken to the Music Therapist, Toni. She brought along a student with her and also a new therapist that just started at Primary. Millie loved it and so did I. I just sat back and listened and it was beautiful to listen to them all harmonising with Millie, and playing off whatever she was doing. It was really impressive.  Millie also sang the song she wrote all by herself. It's truly beautiful but the file is too big to email, so I can't post it. 

The Lyrics:

I like how you look, just the way you are. Just the way you are.
I like how you are, just the way you are. Just the way you are. 
Hymning the tune.....................................................................
I like how you are, because you are a star, Just the way you are.  

We also had a ton of visitors yesterday. Our sweet, sweet neighbor  Lisa stopped by and Millie entertained her, but singing.... you guessed it, Party In The USA. 

It was also my Big Sister Codie's birthday so they brought lunch to me at the cafeteria and then came up to play with the Miss. 

Grandma Jager, Aunt Lindsay, Millie Billy, Aunt Codie, me

Grandpa Jager getting a little extra luck by rubbing Millie's head.

Even the cousins got to play. 

Brady left Friday night and headed up to his family ranch to go spend some must needed time away from the hospital and with Austin. On his way he brought Millie's dog, Jack, by to see her. Of course he can't come in the hospital so she watched him play outside the window. I was a little worried it would just make her sad but she was so happy about it I even got a thumbs up. 

The night went well also. She was getting up so much to use the rest room from all the fluids she gets in her TPN and Lipids that I asked if we could length the time they are infused and it made a huge difference. No more bathroom trips every 1.5 hours.