Lyla had a wonderful first birthday on Saturday! It was a fun filled day with LOTS of presents to open! She was so excited opening every present and has been very busy playing with all her new toys and showing them to her Grammie who came to visit. Luckily Lyla enjoyed the presents because she was not a fan of her birthday cupcake and screamed when the frosting got on her! 
The best present of all was Lyla's white blood cells grew so much last week (currently about 75% of what they were pre transplant)!! The rashes are also nearly gone and she has been such a happy girl! We are hoping so much she continues to stay healthy and her cells keep growing!
We want to send a HUGE thank you for all the gifts, cards and nice messages!! We are so thankful to all our wonderful friends and family for helping us through these few months and for making Lyla's birthday so special! She is one lucky and very spoiled girl!![...]

Lyla's warrior spirit is shining through again! After a long first week out of the hospital and wondering if we could survive the next two months, Lyla slept so much last weekend and woke up a new baby!! She started eating more, playing lots, and babbling again. We knew straight away these were all signs she was feeling better! And, it was certainly confirmed at her Monday appointment with her head transplant Doctor....
In just a few days Lyla's white blood cells doubled, her formula intake doubled and her red cells and platelets all increased on their own! The doctors were once again amazed at our little warrior princess! Her cell counts are remarkable because Lyla is off the drug which promotes cell growth and her white blood cells are already 50% of what they were prior to transplant! She also hasn't needed red cell or platelet transfusions since day 12 which is nearly unheard of! She's also eating enough that she was taken off of TPN (IV nutrition) which makes all our lives so much easier. Plus, she's doing so well that her meds were cut in half and she's had no infections or major problems! To help give perspective, there are a few other kids here at a similar transplant stage as Lyla and they have all been readmitted to the hospital within the first two weeks of leaving.
Lyla is not without her own little issues but they seem to be pretty minor...She is covered in various rashes and skin irritations. They are head to toe and each area is slightly different which is a bit perplexing. The main issue with rashes (besides annoying itching) is they can be the first signs of GVHD (graft versus host disease or the donor cells attacking Lyla's cells). Although Lyla's white cells are 100% donor (think soldiers that attack infections), her T and B cells are only 33% donor (think sergeants that give orders to white cells and provide immunity to diseases). The low percentage for T and B is ok with Lyla's disease because the white cells provide the enzyme Lyla is missing and are the key indicator the transplant worked. But, the two teams are still mixing and could attack each other. The doctors don't think Lyla has GVHD, but started her on a full body steroid cream just in case. It will hopefully clear up the rash and give all of us comfort. The rashes and skin irritation are also a late impact of chemo, might be a drug allergy and can be greater due to her fair British skin!
In other news, Lyla had a heart echo (ultrasound) this week and all looks good! She also had a development assessment and her fine and gross motor skills are within a few months of her age which is amazing given her disease and the time she spent in a hospital crib. In fact, Lyla took her first steps using a baby walker this week!! She's like Bambi on ice but she was so excited and it was such a happy and proud momma moment!! She turns one on September 3rd so maybe she will walk before her first birthday?!!! 
So for now, we are going to keep Lyla's rashes under control, keep her infection free by staying in our Ronald room, get her walking, and hope her white cells keep growing! #growcellsgrow[...]

We want to give a huge shout out to the Ronald McDonald charity for providing us with a great place to stay here in Minnesota! I never knew what amazing things the coin donations in McDonald's does. We are staying in a one bedroom apartment in one of the nicest and largest Ronald houses in the world. It provides free accommodation to families with children who have life threatening diseases while being treated at the University of Minnesota. It's a great facility and volunteers cook meals almost daily. It's also really nice to be surrounded by families going through the same thing as us. We will be here for the next two months until Lyla reaches day +100 and she gets the ok to go home! Several people have asked so here is the address:[...]

After a long week with cabin fever, discomfort, lots of cuddles, 4 different rashes, 200 doses of medication, and her parents learning to be nurses, we ended the week on a high, finding out that Lyla's red and white blood cells are 100% donor!!! That means the transplant worked and is the first key milestone in her transplant!! We are so happy and grateful! 💕🤗💕🤗[...]

Lyla is out of the hopsital!!!!!!!

We never thought this day would come and certainly didn't think it would come this early!! [...]

Wow, what a difference more white blood cells makes!!! Lyla's cell counts have increased so much the last few days and she's doing amazing!!
Lyla spent all day Sunday and a lot of Monday sleeping and recovering from her rough week. In the meantime, her cells were rapidly growing and headed straight to the mucositis and other areas making her feel bad. Just in the last 24 hours she's been weaned off the morphine drip, moved all medicine from IV to gtube (valve straight into stomach and is a big deal because it means her stomach can tolerate medicine now), she's drinking formula (doesn't always keep it down but at least she wants it!), and she wakes up happy and is not crying in pain. It's so crazy to see the impact and realize how important white cells are to the body. It's difficult to give numbers in a non medical language but basically her cells have tripled in just 3 days! We have been warned that her body is getting help from a medicine that promotes cell growth so her counts will drop once she's off that, but as long as she stays infection free she should have enough to keep her feeling good. We've also been warned that we still don't know if the cells are donor or her own but she has no signs of graft vs host disease so I have a pretty good feeling they are the donor cells! We will find out on day +21 which is next Monday!
Lyla is doing so well the doctors are hoping to release her from the hospital later this week!! We were so shocked to hear this! My goal was for Lyla to be released before her first birthday on September 3rd so this is way sooner and definitely earlier than most kids!
The difficult and very scary task now is preparing Steve and I to take care of Lyla on our own! We are going to classes and asking a lot of questions! Luckily we will be staying just a few miles from the hospital and will have daily visits to the clinic. We've also been told that even though Lyla is doing so well, she will likely have a complication in the next few months requiring a hospital stay and is the reason why we need to stay here until day +100. I say we make bets now that Lyla will beat the odds again!!! [...]

This post is dedicated to Lyla's amazing Dad! Steve has left his fun filled days of playing tennis with country club women to being such an amazing dad to Lyla! In his own words, he's very proud of overtaking me as "primary care giver"!! This is why I know Lyla is going to be just like her daddy...
# 5- She can understand his funny sounding English accent
# 4 - she giggles over and over again at his Donald Duck impersonation (which is the same as his jokes to us adults!)
# 3 - she dances to his playlist of Michael Jackson, Rod Stewart and all the top pop ballads from 30 years ago
# 2 - She has an infectious personality that makes you want to be around her all the time
# 1- She's been able to throw a tennis ball since 6 months old!!!
Check out this video from a few months ago...
https://vimeo.com/177927313[...]

Lyla's had a few days of riding a roller coaster but we think it's slowing down. There were some pretty rough hours of pain and issues with mucositis (chemo sores inside body). Without sharing too much detail, the sores in her mouth opened up and she didn't have enough platelets to clot them so it was a little horrific, especially for a dad who doesn't like blood. The sores also cause inflammation in airways so she's had a little bit of breathing problems. This is under control now with more frequent platelet transfusions and oxygen flow in her crib. Her morphine drip was increased everyday last week but it's held steady the last day with only small bumps in other pain meds so that's a pretty good sign. She's had no infections or major complications which we are so happy about and the doctors continue to be impressed with her progress. She's really doing better than expected but any pain as a parent is of course heart breaking. She has had some hours of normal happy Lyla too which is also so good! The best news though is Lyla's cells are growing!!!! They have been slowly increasing everyday!! As such, we are all pretty confident Lyla has hit the worst of it and will merrily float down "it's a small world" ride soon!! Grow Cells, Grow!!!![...]

Today was full of ups and downs but look at this up! 💕

Facebook repost:[...]

It's been a rough day for all of us. Lyla's hair is gone now...it was falling out so fast but patchy and really itchy so the nurses shaved the rest off. Luckily I wasn't there because it would have been too difficult to watch  😢[...]