Finally some Fun

Okay so it's been a month since my last update so I figured its time to write. What a crazy year this has been! This past month I have just tried to focus on getting life back into some type routine, implementing a new schedule, enforcing some discipline, and getting my house off the verge of being asked to star in an episode of hoarders. Now that things are a little more back to normal I can finally catch up on my blog and my crafts!

Lily has been doing really well lately other than some red dark chemo eyes as we call it. She is in interim maintenance 2. She has done this phase before but we will finish chemo at a higher dose. She gets chemo every 10 days and each time they up the dose of one of the chemos by 15%. Because of the CMV that she got before they have started giving her an immune booster every 4 weeks which has allowed her to keep her blood counts up enough that we haven't had any delays in treatment. (On a side note I'm finding out in all this that Lily doesn't recover her counts very quickly at all! It's not really been much of an issue but her Dr. very subtly mentioned it once and based on some of Lily's friends I've realized this) She has appointment on Friday this week and then we get ready for maintenance!!! Maintenance will last until May 2017 and I don't have all the details yet but I know she will be taking oral chemo everyday, and will be alternating between steroids and a different oral chemo for the other weeks of the month. Every month also starts off with spinal tap, and chemo in the spine and IV. We have been told before that once we get into mait. that we will be able to put her in some classes and dance and swim lessons are the top of my list! We still cant do school though for a while :(

Since Lily is finally feeling better, and since it has been so long, we have gotten to do some amazing things. Lily was given the opportunity to go see  Disney's Frozen on Ice and she LOVED it! It all started because I had entered her in this contest to win a trip to Disney and they saw her video and wanted to give her tickets. We sat right up front which was so awesome. Then they did a news interview and gave her the chance to meet Ana and Elsa back stage. Lily was so cute when she went up to Ana to talk to her! It was such a fun night! Here is the link to the news interview.
Fit for a princess

We also got to go to Boise State and meet the football team and got most of the team to sign a poster for Lily. Its hard to remember with how HUGE these men are that they are just still young men! at only 18-21 years old and yet they were so sweet to Lily. They played with her and talked to her and would have hugged and held her if she would have let them. We love getting to do things like this because it gives us things to look forward too and being such big Bronco fans its cool to see your teams coach and players in person.

Okay we do have one more big announcement!.... (No I'm not pregnant! Are you crazy?) Lily has official been granted a wish from Make-A-Wish and for Lily's 4th birthday and Jakes 30th birthday we will be at Disney World!!!! we are going April 13th-19th 2016. We are so dang excited I can even tell you. We get 3 days at Disney World, 2 days and Universal Studios Orlando and a day at Sea World. Because we are going there for a wish we also get to stay in a the Give Kids The World Village inside Disney that is only available to Wish families. It gives us free meals, fast pass on the rides and the use of all VIP lounges and family lounges. The village is there just for wish families and I cant think of anything cooler than staying in the village with other wish families all across the world!

After this last month I have been able to once again see all of our blessings. I know I shouldn't admit out loud that its was hard to see the blessings before, but it was. We just owe a huge thank you for everyone that has bailed us out in the last couple months. Its true what they say about how money comes and goes, they just talk about how hard it is when it goes. We really are so blessed for our family and friends, MSTI peds, 4th floor peds, and all the people that have given us the breaks from life that we needed. We are back in areally good place and we would like it to stay that way!