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 WeekendBefore 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 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...
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.
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 milliesprincessrun.org
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.