Radiation

After talking with our team today at Children's Mercy and St Jude we have decided to move forward with Radiation now.  We have had great - better than expected results with this particular clinical trial and we'd hate to lose that by pushing forward with another 2 rounds of chemo only to find the disease has found its way around the chemo.  Taking that risk into consideration we have decided now is the time.  Hit it while its down - so to say.  

This means that early Sunday morning we will once again pack our bags for that 9 hour drive to our home away from home.  Her appts start on Sunday afternoon and are so far scheduled through Wednesday but our guess is that many more will be added for the rest of the week and we will find ourselves running like normal.  Although it hasn't been confirmed, we are assuming we will start radiation on Monday the 6th.  The plan is for 4 weeks of all over spinal/cranial radiation, followed by 2 weeks of boost radiation to the specific tumors and the original tumor bed.  Once we had our appts with the radiation team in Memphis, we will update more specifically. 

Once again we find ourselves split up from each other...but something we will gladly do if it gives us the results we are so desperate for.  Avery is strong.  She is a fighter.  And we will give it our all to get rid of this damn mother effer of a disease. 

Jenn

Happy 3rd Birthday Baby!

Avery's Birthday Party was a hit!  I think she was feeling a little under the weather so she spent a majority of the party in the Little Tykes Coupe with Grandpa's keys - but hey she had a good time.  The rest of the kids seemed to have had a great time.  She was overwhelmed by all the gifts so of course she went "running" with nana while I finished opening them up.  Thank you to all of you for such wonderful gifts.  She spent the rest of the weekend exploring them and has gotten very protective over them!

Scans were Stable

It looks like we got the birthday present we were hoping for! Avery's scans showed no progression of tumor growth nor any new lesions. This is fantastic and a huge relief for the moment. We aren't exactly sure what that means for us but after we talk to the drs next week we'll have a better idea of what is next. We are at a point in this journey where the drs are guessing and the decisions are not easy to make. The pressure to choose correctly is unwavering, followed by the immediate anxiety that we chose right. It's not a ride I recommend to anyone. But in the same breath I thank god for the chance to choose again...

Avery's MRI went smoothly....her LP was a little tough. Unfortunately being NPO before an LP doesn't help with fluid in your spine. The dr had to stick her quite a few times before she got any spinal fluid to come out. As a result, she has a sore back now. She milked us for the rest of the afternoon and managed to finagle 2 cake pops and a bag of cool ranch Doritos out of us because of it. Her shunt reprogramming went great and we love the new NP from neuro surgery.

Tomorrow we celebrate my hero's birthday. It's been 3 years already....3 birthdays with this fight...but three we wouldn't trade for anything. If we can take only one thing away from this whole situation we'll take this: PERSPECTIVE. Everything looks just a little better when you get some perspective on it. Think yesterday sucked? It could have been way worse....and for someone else it was...I think about that every time my mind wanders to that place...and it goes there a lot. But tomorrow I'm going to adjust my perspective...because I get to spend the day celebrating my hero's special day.

Jenn