Tuesday, February 19, 2013

MRI Results/Update

I thought I had updated this blog with Jaylie's MRI results, but I guess I just did caring bridge and facebook. Her MRI showed no sign of cancer! NED! We are so relived and so thankful. I think I was more nervous for this scan for some reason. I get so nervous and get scanxiety for all of them. This was Jaylie's one year off treatment scan!, and it was a huge one. I have said on here before that the trend shows that for sPNET kids, if they recur it is usually within the first year off treatment. Most at the 6, 9, and 12 month off treatment scans. So we are so blessed and so thankful to be here at this point, one year out from treatment! It doesn't by any means mean she is in the clear or "in remission". Once she gets to 5 years from diagnosis, we will be able to say that, although it could still come back after that.  Scan time is so hard. Its like waiting for the one moment that we hear if our little girl will live or die. When a child with sPNET relapses, there is nothing more they can do, the cancer comes back too aggressive. So its terribly scary every time, can not even describe it. We are feeling good about things though and feel that the cancer will stay away for good.

 She woke up happy from her MRI, but she was so cold. She gets the chills after anesthesia, poor girl. We can't ever get her warm enough and I made it worse by pulling her blanket down to get the foam on the sticky window that covers her port :) The foam helps it pull off a lot easier and doesn't hurt her as bad. She has such sensitive skin. So here is a picture of her with the foam on, trying to stay warm. 

 Every time we go to clinic, I try and take a picture of Jaylie by the Hello Kitty. They started painting Hello Kitty's on the window about halfway through Jaylie's chemo treatments. She gets excited every time she sees it :)

I can't believe she has been off treatment for a whole year now. It is so weird. Sometimes it still seems like a dream, but we see the realities of childhood cancer everyday and are reminded of how horrible it is. My facebook this last week was full of heartbreak from so many young cancer warriors losing the battle. Everytime I go on my facebook (because now it is full of cancer pages and organizations) I am flooded with the realities of cancer and it breaks my heart. I am so thankful that Jaylie is in a good place. She is doing so well at school and keeping up with her classmates just perfectly. She started a hip hop dance class and absolutely loves it! It is the highlight of her week and she smiles so huge through the whole hour of dance class. She loves her friends and is really happy. We are gradually starting to see a little bit of cognitive effects from her treatment but they are minimal right now. Her balance is slowly getting better, but it is not even close to what it was before treatment. Her coordination is so much worse than it used to be also, but she doesn't seem to notice or remember how athletic she was before. She is happy being her, which is more than I can ask for. She is amazing and I love her so much. She celebrated her 7th birthday on February 6th. We had a party for her that weekend and she loved having her friends there. She had been thinking about and planning this party for over 6 months now :) Love her! I can't believe she is already 7. She was just over 5 when she was diagnosed.  Time is going so fast. I wish I could freeze it. I don't want them growing up so fast! Jaylie will be 8 next year and will get baptized. So crazy, she is really excited about it :)

Jaylie is getting surgery to get her port removed! It's scheduled for March 6th. It will be so nice not having it in. Her infection risk is cut way down (although she has never had an infection in it) and we won't have to go to the clinic every month to get it poked and flushed. We will only be going every 3 months for her MRIs and other tests and neuro onc appointments. They were going to do surgery to repair the "hole in her skull" from her last surgery but the doctors said it looked "funky" and had a lot of scar tissue (scar tissue and cancer both light up in the MRI and its hard to tell what is scar tissue and what is cancer). So they want to keep an eye on it before they do surgery again. They are pretty sure its just scar tissue and she will probably have that surgery in the summer time. In late April, it will be 2 years from diagnosis.  Usually they would move her to every 6 month MRIs if all is clear ta the 2 year mark, but they are keeping it at every 3 months for a little while longer to watch the skull more closely.

About a month ago, Make A Wish invited Jaylie and I to go and talk about her Make A Wish experience with the radio station here, Kase 101. They recorded us and are playing it on the radio for advertisement for a Make A Wish radiothon, trying to raise money to help carry out wishes for the kids with life threatening illnesses, like Jaylie. Make A Wish was amazing to us so anytime we can help, we love to. Jaylie was sooo excited to do it and it was really neat being there. A lot of the Austin radio stations record there, so it was fun seeing the studio. Jaylie did great and they seemed to really love her :) The radiothon is this Friday at Barton Creek Mall. Its all day long, so tune into Kase 101 on Friday! Jaylie will be live on the radio sometime around 4-5 pm. She is really excited! Click here for more information about the radiothon. You can donate by phone or online or at the mall on Friday. Please share this link with your friends and family to help get the word out and help very deserving kids in our area!!

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