Saturday, 30 June 2012

Day 8

Speechless. That is what I am and it's too late for me to get my thoughts together after such an incredible day, so I am going to wait until I have the time I need to sit down and write down exactly what today meant to me and to my family.

I will let you know that Millie needed platelets today and she has had a little bit of an upset tummy. They are thinking she may have sores in her stomach and that's what is causing the pain. It is mild and easily controlled right now. She had another fantastic day.  Thank you so much to Kimmy for sitting with Millie during the run.

I will leave you all a picture of these beautiful woman. They were the driving force behind today, Thank you doesn't begin to express how I am feeling tonight, but thank you to Ann, Shannon, Lisa, and Christine

Thursday, 28 June 2012

Day 6

Today was another great day. Millie is tried and not dancing around the room anymore, but she does have bursts of energy here and there, she is still laughing, smiling, and playing jokes on people.

When I was a little girl I loved 7 Brides for 7 Brothers and I watched it with her today. She giggled the whole way through. She loved it when the girls were tricking the boys and dumping water on their heads, but her favorite part seemed to be the dance scene when they are fighting over the girls before the barn raising. It was always one of my favorite movies and it made me giddy to watch it with her.

She hasn't wanted anyone else to stay with her at the hospital as she wants to be with us as much as possible.  Jeff (Brady's dad) offers nearly every day to come spend the night with her, but she hasn't let him during this stay.  Brady talked to her about it, and she was happy to have grandpa come as long as Brady stayed until she was asleep.  It will be so great to spend some time with Brady.  It seems we only see each other for moments as we trade off shifts at the hospital.

Austin spent the day with his nana (Brady's mom) and he had a great time.  He couldn't stop talking about the deer he saw at her house. I also came home to sparkling floors which was a wonderful surprise. Thanks mom!  Cousin Sherry also called and offered to make my tutu for Millie's Princess Race on Saturday, so now I don't have to worry about that either. I am always amazed at the love everyone has for us and how willing they are to help.  Honestly don't know what I would do without the support of so many people. 

Another day down, and with each passing day, we feel encouraged.

ALSO, Tune into KSL tomorrow at noon. Millie's race is being featured! 

Wednesday, 27 June 2012

Day 5

Brady spent most of the day with Millie and once again it was very mild. Brady said she didn't go to sleep until around 1 am which is hard on everyone, but it was just because she wasn't tired. That's what happens when you sleep a lot during the day. It's a nasty cycle. He also had to run into work for a meeting so Nana came to play and they had a great time. Millie loves it when her Nana visits. Tonight Millie was even feeling well enough to play games with Grandpa Jeff and I. 

She has been complaining a little about her throat. She says it feels weird. Our nurse thinks there are probably sores forming down it. Just because she doesn't have any in her mouth doesn't mean they can't form anywhere else in her digestive tract. I kind of had the impression that it would be mouth first and others parts later, but that's not the case. Hopeully it's nothing and her throat really does just feel weird.

Austin and I ran around all over town trying to get everything done I have to do in a week. He was great until it came time to get my hair cut. Then he decided to scream randomly and drive a motorcyle on my head. Very helpful. Tonight he is home snuggling his daddy and couldn't be happy.

Here's to another uneventful day and hopefully night.

Tuesday, 26 June 2012

Day 4

Everyone has told us to expect for Millie to be on a pain pump by day 3 or 4.  Well, Millie is not on a pain pump and so far she still has no active sores. To me she is a walking miracle. Today has been very uneventful which is always a good thing when you're at the hospital. I honestly don't have much to report. She played some and slept a lot. Brady is with her now and things are still smooth sailing. I hope they both get some much needed rest tonight.

Monday, 25 June 2012

Day 3

1:00 am rolled around and our great night turned into a nightmare. Millie started screaming in pain. The only time I have heard her sound like that was when she had her kidney stone back in January. It was mortifying. Remember our handsome nurse, Eric, well now she wasn't enthralled by him anymore and she was yelling at the top of her lungs for him to DO SOMETHING. She was screaming HELP ME, PLEASE HELP ME over and over again. Other then keep her steady on the toilet and hold the garbage can in front of her there wasn't much I could personally do and I felt so helpless. Eric was great and although Millie was furious with him he got her pain and nausea under control. Before Millie fell back asleep she begged me to call her dad. She wanted him to come give her a blessing and I am so glad he did. I know that God hears our prayers and Millie didn't wake up again that night. This morning she is her happy playful self and she actually just got done doing my hair. She told me it's the new fashion, and my bangs are sticking straight up!

Our nurse today is one of our initial favs, Kathy. We haven't had her since February when Millie first relapsed but I was so happy to see her face this morning. She just premeditated Millie with some benydral and is now getting ready to administer platelets. Her counts are really low today and she got a minor nose bleed last night. So glad it wasn't worse, they are nearly impossible to stop when their platelets were as low as Millie's are. 

Millie's test results are back and we know what has been causing all the pain. She got a bacteria called C-Diff. it's from all the antibiotics she is on. She has gotten it once before and usually it takes 2 weeks for it to heal, but with her transplant she will have it for the duration of our stay here. Her body can't fight anything off so once she gets something it sticks with her. They did start her on a new antibiotic which is a ironic to me since that's what caused it in the first place, but hopefully it will at least help with the symptoms and things won't get worse.

Millie is also hooked up to her IV pole 24 hours a day. We have rigged it up so that she doesn't have to move it around as much,  but it does cause a problem when her cords get all tangled up, but it's better than her having to drag that dang thing around with her all the time. It hasn't slowed her down too much, other then her dancing. She feels like she can't dance now. 

Today she will receive:

TPN and lipids
Amphoteriein (iv antifungal)
Actigoll pill (protect liver)
mouth care (4x day)
zofran (nausea every four hours)
meropenem (iv antibiotic 3x day)
Flagil pill (c-diff antibiotics 3x day)
Ativan (if needed, usually once a day or so)

My Austin man is spending the day with his Aunt Kim and her kids. I hope he is a happy boy, Brady mentioned that he was very sad this morning and just wanted Brady to stay home with him and snuggle. This is draining on Austin too.

As for the rest of the day it went smooth considering. Millie did throw up a handful of times, but I just feel like things could be so much worse. 

Pictures... my phone is still giving me issues, but I'm working on it. I'll post when I get them. 

Sunday, 24 June 2012

Day 2

Holy Cow, the time is going so slow. I was thinking we were Day 5 or so and it's only day 2!!! Well all in all it was another great day for all of us. Millie had a rough morning again, but they were a little better prepared this time around so she didn't get quite as sick. She is still eating pretty well which is so great and her mouth sores are also holding out. Every day we go without those nasty buggers is a day my prayers have been answered.

Millie was starting to feel a little ill again tonight, but now she is fast asleep and I hope dreaming about something beautiful. Although, she told Brady that sometimes dreams are sad because you may be dreaming you live on a Disney Cruise and then you wake up and you're here. She is so silly.

I can also tell the the reality of what is about to happen to her body is setting in. I had to prepare her for the fact that soon her mouth will erupt with sores as we can see them forming, and tonight before falling asleep she told me she was scared. She shouldn't have to worry about this crap and sometimes it makes me so mad. Thankfully her nurse tonight was handsome (her words, not mine) because he was able to distract her and get her giggling again. So thankful for the amazing staff here at Primary Children's Hospital. Don't know what we'd do without the love they have for my baby girl.

Let's see, as for Austin he also had a pretty good day. I'm trying to remember what we did before we came to the hospital, but I honestly don't know... The days are blending. Brady did take him to his cousin's birthday party this evening and he had a blast. He loves his cousin Lincoln. They are so funny together. He also got his first haircut since we shaved it all off months ago. At first he was freaked out, but once he realized his Aunt Kim was only cutting off a little and not all of it he was fine. Apparently I traumatised the kid when I buzzed him. Sorry little man.

Pictures... I did get some today, but they are on my phone and it doesn't want to load them for some reason. Oh, the one I really was looking forward to posting was of a book Millie made for Austin today. It was the sweetest thing. It was full of all the pictures and stories of the fun things they like to do together. I'll post when I can get it working.

Goodnight all

Saturday, 23 June 2012

Day 1

Brady has been with Millie this morning. He called to give me an update and although she sounded like she was doing great, it didn't start out that way. Millie woke up horribly nauseated. She threw up everywhere and was hunched over in pain. There are a number of reason as to why she could be feeling ill, but it's probably her body freaking out due to the new cells that have entered her body. Thankfully we have an awesome nurse today and she took excellent care of my sweet Amelia.  Her nurse got her some zofran, pain medicine, cleaned her up, and set her in bed with a warm pack. When I spoke with her she sounded pretty happy and was getting ready to draw pictures of all the things she looks forward to doing when she is finally well enough to be out in the world again.

Today I am home with Austin and he has been such a silly guy. We watched Ponyo this morning, one of his favorites, and sat around in our pjs. It's so nice to be home with him and I enjoy every second of it. Right now he is telling me the story of the 3 Little Pigs. We have had a great day together. He randomly comes up and gives me a kiss or snuggle. He's happy to have his mommy at home.

This afternoon Millie got a visit from her cancer buddy, Cami. Millie seriously couldn't have been happier to see her, even if it was only through the window of her door. Aren't they funny little things. 

                            Photo: Playing ANY way they can!!! Love you (super strong and amazing) Millie!

In the early evening Austin and I headed out to grab some special request items from the Miss and then headed straight to the hospital. When we first got there Millie was asleep and Austin was so bummed he wasn't going to get to play with his sis. Finally we decided we'd try to wake her up since it was too early for her to go to bed for the night anyway.  Brady and I were a little nervous since Millie really does not like to be woken up, but I'm so glad we did. My little bugs couldn't have been happier to see each other and it was actually the best time we have had together as a family since Millie has ever been in the hospital. Being 2, Austin can be a bit tricky around a lot of buttons and things he isn't suppose to touch. It was a great night filled with giggles, playing temple run on the iPad, snuggling, and watching Bolt.

When Austin climbed into bed with Millie he said, "I miss you", and gave her a kiss.  Then he asked Brady if  she was coming home. When Brady told him no, not yet, Austin said, "but I need her".  
It was the sweetest thing.

It was just starting to get dark when Austin and I got home and since it was so nice out we decided to take Jack for a walk. It was a wonderful way to end the day for us, but sadly Millie has been having a rough night emotionally. All in all I think it was a pretty good day for Millie, but it seems that she is either really high or really low. I am so grateful her mouth sores haven't erupted yet. You can see a few starting to form, but the longer they hold off the better.

Friday, 22 June 2012

Day 0: Campfire and Creamed Corn

There is something about smells that can overwhelm your senses and take you to your most treasured memories. Two scents that will always remind me of June 22, 2012 is that of a campfire and oddly enough, creamed corn. Why? While I was preparing to head to the hospital this morning when I looked outside and noticed an unnatural, but beautiful glow coming through the clouds. I stepped outside and was hit with the overwhelming aroma of smoke. Ash was falling from the sky. Something somewhere was burning and the stench filled the air.

I knew Austin wasn't going to last long at the hospital so while Brady and Millie hung out, Austin and I went to lunch at Cafe Rio. It's one of the only places that he will actually eat something from. It was an odd feeling standing there in line ordering a taco while it was going to be the biggest day of my daughter's life.

Today was the day we have been waiting for. It seems so strange to have it be over.  We have waited so long and although Millie got her cells today, we still have so long to go before she is totally in the clear, but here we are waiting and wondering what will happen next. 

Her new stem cells arrived in a cooler, they brought them in, hung the bag, and that was that. Millie immediately felt ill. The cells have been frozen for around 2 years and since they have to be extremely fresh, they were still ice cold going in. She had been given Benadryl to help with any potential reaction and although she was struggling with the sensation of the cells entering her body she fell asleep quickly. It only took about 15 mins for them to completely infuse into her little body and I couldn't help but picture them swimming around in there trying to find where to go. 

So why will I also be reminded of today whenever I smell corned corn (which probably won't happen too often)? The stem cells from the umbilical cord blood were frozen in a preservative, and it stunk like creamed corn. This is something else Millie was not handling well. Who would have thought the preservative would be an issue? Not me. Millie fell asleep before she noticed it initially, but once she did wake up the taste of the preservative was unbearable.  When I would lay by her in bed I would have to turn my head away at times to try and get some fresh air. I hear day 2 is worse...

Tonight I am at home with my beautiful little man who has been amazing today. I could tell he too was overwhelmed by the day as we have been mentioning it to him over and over again for months, but he handled himself pretty well and I am so grateful he was able to stay and be there for this moment. Austin only knows Millie with cancer. She was diagnosed 4 months after his birth and she has been fighting ever since. Today starts a new life for him as well. 

How bizarre to say that my daughter is Cancer Free. I thank my Heavenly Father every day that he sent Millie HER perfect match, no she didn't actually have a "perfect match", but I believe as well as her doctor's believe, that this is what she needed to destroy any remaining cancer. Millie needed the extra stress that having a little graft versus host disease can bring. Sounds odd I know, but for her going into day -10 with 0.6% cancer still in her marrow (they wanted it at or below 0.01%), some graft versus host could kill any cancer cells that may have survived the past 10 days.

Now begins that countdown to engraftment. Want to place a bet? Cord cells engraft on average at day 28, but have done so as soon as day 11 and as late as day 62. Millie guessed day 30. Here's hoping it's closer to 11, and not 62, YIKES! 

Millie loves her daddy.

 In this little, red cooler sits the cells that will change all of our lives forever. 

It's time.

 Happy B.M.T. Birthday To You!
The room was full of medical staff who truly care about our daughter and want to celebrate with us, as well as Millie's grandmas and her grandpa Jeff.  My dad is home recovering from a cold so he couldn't make it.  We celebrated and opened presents, but before we could finish opening them she fell asleep - Benedryl will do that to you...

 Millie and her new stem cells. Thank you to the total stranger that stepped up and decided to donate her umbilical cord to the bone marrow registry. My baby wouldn't be here today if it was not for you. You and your beautiful, little girl saved my Millie's life today. 

 Millie's Bone Marrow Doc
(Sadly it's the only pic I got, I'll have to sneak one another time)

 The Miss was exhausted from all her meds, and I am so glad she got some much needed rest. She did not feel well and I'm grateful she slept through the majority of it. 

Ya, Millie looks uncomfortable in her sleep and we all have on huge smiles, but it was an amazing day and I couldn't help but grin from ear to ear. 
Happy Bone Marrow Transplant Birthday, Amelia! 

Thursday, 21 June 2012

Countdown to Transplant

Millie's transplant is tomorrow!  I can't believe it.  It seems like a lifetime since she relapsed, yet it seems like only yesterday.  It's funny how that works.  The next little bit will be very difficult on our whole family, and of course Millie in particular, but it will be good to have it done and to be on the road to a healthy future.

First, let me just apologize for the length of this post.  This blog has been wonderful for us.  It's allowed us to communicate with friends, family, and other well-wishers so that everyone knows what is going on.  It's also functioned as a family journal to record what is happening.

One Last Weekend
Before heading back to the hospital for what is likely to be 2-3 months, we took a trip to the Flamm family ranch in Robertson, Wyoming.  It's been in my family for generations and we love it up there!

The first thing Austin wanted to do was go see the horses.

We invited the Carver family up to join us.  Cami was diagnosed with the same type of leukemia Millie has, about six months after Millie's original diagnosis.  These girls share a special bond and have been through a lot of hairstyles together!

Austin and Caden had a lot of fun together as well!

It was a great weekend.  We had a great time, and fit in some of her favorite things while we could.  I bought a bunch of fireworks and we even celebrated the 4th of July, since she'll be in the hospital for it.

My dad came over Sunday night and we gave Millie a blessing.  The worries I have had for the future disappeared as we felt a calming assurance that everything would be alright.

The Countdown
The bone marrow team uses a number system to keep track of days around the transplant.  Before the transplant there are 10 days (-10 to -1) for radiation and chemo.  These treatments are designed to kill all cancer left in her body, but while doing so, will kill all of the bone marrow in her body.  The transplant is needed to replace the bone marrow that has been destroyed during treatment.

The transplant is day 0, and then we start counting upward - a tally that they'll track over the long term.

Day -11 (June 11th) Millie had her port removed and a new central line (this time a broviac) placed. 

Days -10 through -7 consisted of 4 days of radiation with 2 treatments per day.  We were very worried about this, but the staff at the Huntsman Cancer Institute took fantastic care of her and she was actually sad when we were done.
Using x-rays, they developed metal shields to protect her lungs from the total body radiation.

They'd put the shields on this clear table above her and drew on her with marker so that they could keep them lined up during each treatment without having to do additional x-rays.

We then had to leave her alone in the room.  It was really tough the first morning, but she handled it so well that it got easier with each treatment.

We're supposed to wait in a separate room, but they were nice enough to let us sit with them just outside her room.  You can see the position she had to lay in on the monitor.  
She loved the warm blankets at the end of each treatment!

As always, she keeps herself busy!

She even made our dog Jack a cape!

She's always happy when her brother comes!  She asked for my dad to spend the night.  He's always great about it, even though it's not the most comfortable sleeping arrangements...

She's very excited for a new Disney movie.  Can you guess which one?  (Special thanks to the women on my mom's side of the family for the great gifts!)

Days -6 through -2 she got high dose chemo.  For three days she was on fludarabine, followed by two days of cyclophosphamide.  Like the radiation, she tolerated the fludarabine fairly well.  Some headaches and stomachaches, but nothing a super hero like Millie couldn't handle.

Cyclophosphamide, on the other hand, was very tough on her.  She's been on chemotherapy, in one form or another, for two and a half years.  During that time period, she has only thrown up once - until yesterday. 

Here's Millie reading up on Justin Bieber during treatment.

Today is day -1.  She doesn't have any treatments today, other than a host of medications to prevent infections, viruses, and anti-rejection medication in anticipation of the transplant.  Today is a break to allow the chemo drugs to work their way out of her body in preparation for the transplant tomorrow.

Yesterday evening, while Amanda was with Millie, I took Austin up Big Cottonwood Canyon.  I live a few miles from the mountains, and I really wish I had time to spend more time up there.  Poor Austin hasn't seen enough of me lately, and when he does, I'm often too worn out to play with him as much as he deserves.  Yesterday was a good time for us to have fun.  He was excited to go for a hike and insisted on wearing his cowboy boots.

This photo was taken moments before Austin walked into the stream.  Boys will be boys...

The Transplant
Tomorrow's the big day.  Day 0.  Transplant day.  The hospital is so good at helping the kids emotionally along with the physical side.  They suggested celebrating a new birthday tomorrow.  It's only fitting.  Millie will get a brand new immune system, a new blood type, and a new lease on life.  We got her presents and decorations for her room.  She's really been looking forward to it, and it's helped her get through a rough week.  

For those that haven't heard, the best match for Millie wasn't bone marrow, but umbilical cord blood, which is also handled through the bone marrow registry, if I'm not mistaken.  There are subtle differences between the two, and each has its pros and cons, but at the end of the day what mattered was that the cord blood was the best option for her.

They'll bring the stem cells from the cord blood up to her room in a frozen state (the cells are almost two years old) and thaw them in our room.  The transplant itself is a simple process.  It will be put into her bloodstream through her new broviac line.  It will find its way to her bones and should start the process of growing new bone marrow.

Post Transplant
After the transplant, she'll have no immune system until new bone marrow grows (engraftment), so we'll be in the hospital to keep her as safe as possible.  This will be the hardest time she's yet to face.  As a side effect of the chemo she will develop horrible sores in her mouth and throughout her digestive system.  We've been told how horrible this will be.  She won't be able to eat and will be given nutrition directly into her blood through her broviac.  She'll have a pain pump to continuously give her morphine to help her manage the pain. Once engraftment takes place, these sores will heal fairly quickly.

Engraftment should occur at some point between day 20 and day 50.  The average with transplants from cord blood is 28 days.  We'll be grateful no matter when it happens, but we sure hope it's closer to 20 than 50.

Millie's Princess 5K
We're very excited for the 5K on June 30th that has been organized by wonderful friends and supporters in our neighborhood.  Despite the challenges that they are dealing with themselves, they have stepped up to support us.  Amanda and I are looking forward to being there, barring an emergency with Millie.  We've had so much support throughout the past two years.  It will be an amazing event, and at a point that is sure to be a very tough time for our family, it will be wonderful to get together with so many people who support us.

For more info, go to

One More Thank You
We have been overwhelmed by the kindness by so many.  Words cannot describe the gratitude we feel for the countless wonderful things, both big and small, that have been done for us.  While living in the hospital, we have not been able to keep up on thank you notes, but we hope that you all know how much we appreciate the support.  It has been a rough six months, not to mention the two years before that, but we as a family are feeling strong and are as optimistic for the future as ever.  We have shown more strength than we knew we could, and we know that the strength has come from all of you.

I want to extend a very special to Tony McGill, his family and friends, and our wonderful classmates from Oxford.  Tony ran the Brooklyn half marathon in Millie's honor and organized a fundraiser.  Tony set a very ambitious goal and then exceeded all expectations.  As a side note, you'll notice the sweet "Miles for Millie" shirt.  My brothers recently did the St George Ironman for the second time and had these made.

We are so blessed to have so many of you supporting us in every way possible.
Thank You.

Wednesday, 13 June 2012

Anyway We Can for Millie Flamm

This post was written by a total stranger to my family. What a beautiful tribute to Miss Millie. Thank you Katie. You can read more by Katie here

Miss Millie

Sometimes we have bad days wherebad things happen to us and we get stuck in a bad mood.  For me, those days seem to be directly and unmistakably correlated with Monday mornings.  This seems to be the time when that measly-little-ounce of creativity I possess is still stuck on Sunday afternoon’s nap and I have to go to work without it.  What I wouldn’t give for the imagination of a 4-year-old on those days.  Four- year-olds see the world without limits and without the grogginess that comes from too many years of succumbing to bad moods and self pity.  Four-year-olds can see beyond the line that adults call reality and envision themselves as space explorers and superheroes…or princesses.  There is one thing I can think of that a 4-year-old could never imagine though:  being diagnosed with childhood cancer.

Night of Diagnosis
When she was only 4, Millie Flamm was diagnosed with Acute Lymphoblastic Leukemia, a cancer that grows rapidly and causes the bone marrow of the patient to make dysfunctional cells that would normally become lymphocytes the body would use to fight infection.  Millie, who is now 6, found out that her leukemia had returned earlier this year.  I first learned about Millie and her family from my lovely friend and coworker Christine who is very involved with Millie’s cause.  Of course, my first reaction was to think, Oh my goodness, this girl is only six years old and she has to go through THAT?  It was a reflex for me to feel appalled by the unfair weight placed upon such little shoulders, and then to simultaneously feel pity and be grateful that this cancer did not happen to me, which seemed to be too selfish of a blessing to focus on.  I thought of the toll her cancer must have taken upon Millie’s carefree nature and the spirits of her mother, father, and brother.
Christine sent a company-wide invitation to an upcoming 5K walk/run in Millie’s honorshe had helped to plan, and so I clicked on the link that led me  I am so grateful to be working for a company that values community involvement and employees who find ways to give back wherever possible.  Without those values, I might not have been able to learn about Millie through Christine.  While looking over the details for the fabulous princess-themed event, I found a link back to Millie’s mom Amanda’s blog.  I began scrolling through post-after-post and scanning the pictures that detailed Millie’s life and the love of her family.  After a few short minutes, my entire perspective had been turned upside down.

Millie and Austin (Brother)
What I found on the blog was not fuel for pity or sadness, but a completely honest and genuine account of everything that was happening.  The posts contained the truth behind what Millie was going through, but one thing that was even more apparent and pervasive than the cancer itself was the love and happiness that bound this family together and that attracted people by the hundreds to Millie’s cause.  After seeing Millie’s strength, I no longer wanted to pity her.  In fact, I wanted to be like her.  I wanted to stand up with Millie and kick cancer’s butt too!  How much time have I wasted feeling sorry for myself when I could have been as cool as Millie and her family all along?
Inspired by an entry I found that mentioned t-shirts that friends had made in support of Millie with the phrase “Anyway We Can for Millie Flamm” printed across the back, I felt this desire to know more.  I asked Christine to take a few minutes and talk with me about Millie and her family.

Here is an account of our conversation:

Q: What led you to become so involved in Millie’s cause?
A: We are backdoor neighbors!  I love this little girl!!

Q:  What was the inspiration behind Millie’s upcoming 5K Princess Run?  Will Millie be able to attend?
A:  After finding out that Millie was diagnosed with leukemia a second time, friends mobilized to help offset the cataclysmic financial strain on the family by creating Millie’s 5K Princess Walk/Run.  The event promises fun, plus the blessing of all donations being matched up to $10,000 by an anonymous donor.  Millie just had her bone marrow transplant Monday so she will be in isolation for a while, so no, she can’t attend the race this year.

Q:  What do you find most inspiring about the Flamm family’s story?
A:  It’s real. They don’t pull punches, gloss over the facts, or soften the reality of what is really happening to them and to Millie. Yet, in spite, of the agony of helplessly watching their little girl suffer through cancer treatments, not once but twice, they are still a happy, solid family.

Q:  Why do you think Millie’s story matters so much to everyone who learns about it?
A:  Millie absolutely adores the fairy tale ending that awaits all princesses… and let’s face it, she embodies every thing that a good princess would – immense courage, a kind heart, and a gracious smile. What started out as a simple idea has rapidly grown into more than a neighborhood show of support it has become a wide-scale community effort. Once people hear Millie’s story, they can’t say no. Who could?

Q:  Why is getting help for Millie so critical right now?  Why is it important for people to get involved?
A:  Financially-speaking, paying for cancer treatments once is a strain on most families, doing it twice can be cataclysmic. We want Brady and Amanda (Millie’s parents) to focus on Millie and her little brother Austin, not how they will pay for all of her care.

Q:  How can people who can’t attend Millie’s 5K contribute and walk alongside Millie on her road to success?
A:  We realize that not everyone lives in Salt Lake City or can run or walk. Yet, there are three ways that people can help out our little princess, Millie:
1) If you are active on Facebook, type Millie’s Princess Run in the search box and locate her Event Page. Then like the page and share the page with your friends – ask them to share it to – repeatedly.
2) Go to and register and pay for the race but don’t run it orsend a donation to the address listed on the website.
3) Make a donation to Millie’s Princess Run at any Mountain America Credit Union.

Q:  Cancer is a very unnerving thing to say the least, yet the Flamm’s have inspired countless people with their genuine and optimistic outlook.  How has this family managed to stay positive in the face of something as incomprehensibly scary as leukemia?
A: Initially, Amanda was very involved with other cancer families (those with children who have cancer) through Cancer Cuties and Race for the Cure. Serving other people when life hands you the impossible, is a sure way to maintaining perspective and peace. Amanda and Brady are both great examples of that principle.

Q:  Cancer has affected Millie’s life, but she is obviously not defined by her illness.  What is it that defines Millie then?
A:  Millie shows all of us that when life is hard (as it always is) that we can overcome it all again and again with grace and joy in the journey.  She’s the little girl that will not give up – no matter what because she’s waiting for her fairytale ending.

Millie's Family
This blog post, though a small effort, is part of my “anyway I can” for Millie.  Thank you to Reading Horizons and Christine for allowing me to write this post and to spread the enlightenment and peace that working for a company-with-a-cause and finding Millie Flamm have brought me.  Even on our darkest days we can find the brightest of blessings if we are only just brave enough to look for them.  Thank you for teaching us that, Millie.  You have our hearts and our support.

Sunday, 3 June 2012

Admit Date

Just heard from our doc and they can't get Millie in till the 11th as there is too much to prepare for.  We will have appointments all week to get ready, but will go "in" on the 11th. 

Saturday, 2 June 2012

Dear family and friends,
We heard back from the hospital.
When she relapsed in February, it was 80% cancer blasts in her bone marrow.  After the first round, it was 3.5%.  After the second round, it was 1.5%.  Ideally they hoped that the third round would take her to 0.001% or below. She did not quite make it there, but she did drop to 0.6% and her doctors still feel optimistic going ahead with transplant. 
They can't do another round of chemo at this point.  In the few days leading up to the transplant, she'll get 4 days of radiation and extremely high doses of chemotherapy she hasn't seen yet.  The hope is that it will destroy any cancer left in her marrow.
They are hoping to start things ASAP.  Originally, they were going to spend next week testing and admit Millie to the hospital on the 11th.  They're now going to start ASAP.  We'll probably be admitted mid to late next week.  They have already ordered the chord blood and are beginning preparations.
The fact that her cord blood is not a perfect match increases the chances that she'll have graft versus host disease, which could cause serious complications.  However, some graft versus host can be good as the new bone marrow can attack the cancer left in her body.  We're hoping that if she has graft versus host that it will kill any cancer left, but that it won't cause too much long term damage.
We're trying to stay positive about this, but the reality is, it isn't the news we were hoping for.  At the end of the day, what we have to remember, is that despite what the odds may be, she's not a statistic, she's an individual and a fighter.  We're going to do everything we can to beat this and pray for a miracle.
Thanks for all of your love and support,
Brady, Amanda, Millie, and Austin

Graft-versus-host disease

Graft-versus-host disease (GVHD) is a complication that can occur after a stem cell or bone marrow transplant in which the newly transplanted material attacks the transplant recipient's body.