Avery has done well for the first 2 days of radiation. Both days they were slightly delayed in starting due to issues with the kids ahead of her, but she was done by 3 each day. Jeremy said she was really tired today after. As you can imagine, being sedated each day can really wipe you out. She still has enough energy to run from me on FaceTime screaming " you can't get me!". As daddy chases her with the iPod and I yell " I'm going to get you.". It's all rather comical. Tonight she hid behind the corner and promptly counted aloud to ten before coming to find me on the iPod. Who knew she could count to ten? I have a sneaky suspicion she can do a lot more than we have seen...
Jenn
Avery's Journey - Childrens Brain Cancer
Tuesday, February 7, 2012
Saturday, February 4, 2012
Moved
Well the week was pretty low key for us. We spent a few nights having dinner with the Parkers and celebrating Megan's continued NED news. On Friday we were moved into the Target House -- our old stomping grounds. They actually put us on the same floor, one apartment down from our previous apartment. It was crazy to see the amount of kids that have come through the Target House since we left. When we left in May 2010 we created a photo collage of Avery for the wall. She was the 3rd kid on the floor to put up a picture. There are now over 15 pictures up.
It's nice to finally have access to a kitchen so we can eat normal food and get away from the eating out. We went grocery shopping this morning and loaded Jeremy and Avery up with enough to get through the week. Avery will start Radiation on Monday. She is NPO until after the procedure so she won't be eating until lunch time or later each day. Skipping a meal is not going to help in our battle to fatten her up, but hopefully her appetite will stay up and we can feed her some high calorie items to make up for it. Once she has been doing things for a few weeks, her start time should be earlier in the morning so we may be able to eat breakfast afterwards.
I am dreading my departure tomorrow...leaving her here at St Jude seems very wrong to me. I was here for 4 months 2 years ago, thinking this will take care of it. We have some defecits to work through and a long lifetime of scans and disabilities, but it will be worth it. Never did I imagine we'd be doing it again...looking at even more deficits and the possibility that it won't work. We have a 50/50 shot of getting rid of this evil disease - it either will work or it won't. But regarndless of it working, we have a long line of medical problems that will accompany it. We laughed at the Dr when he said she might need hearing aides after radiation -- huh? We've had those for 18 months! Dial em up we said. Heart problems, growth issues, thyroid problems, necrosis...its not a pretty list of what we might see. But once in the place we are now - we've decided that all those things are worth it if we get to keep her here with us longer...
So please send out your prayers for Dr Merchant and his team to make the right decisions for her in the treatment plan and for the radiation to do what we need it to do. Please pray for small side effects in the next 6 weeks and strength for Avery and her body to endure this toxic treatment. We pray every night to our Jude, hoping that his little presence in Heaven is the reason Avery is still here fighting with us.
Jenn
It's nice to finally have access to a kitchen so we can eat normal food and get away from the eating out. We went grocery shopping this morning and loaded Jeremy and Avery up with enough to get through the week. Avery will start Radiation on Monday. She is NPO until after the procedure so she won't be eating until lunch time or later each day. Skipping a meal is not going to help in our battle to fatten her up, but hopefully her appetite will stay up and we can feed her some high calorie items to make up for it. Once she has been doing things for a few weeks, her start time should be earlier in the morning so we may be able to eat breakfast afterwards.
I am dreading my departure tomorrow...leaving her here at St Jude seems very wrong to me. I was here for 4 months 2 years ago, thinking this will take care of it. We have some defecits to work through and a long lifetime of scans and disabilities, but it will be worth it. Never did I imagine we'd be doing it again...looking at even more deficits and the possibility that it won't work. We have a 50/50 shot of getting rid of this evil disease - it either will work or it won't. But regarndless of it working, we have a long line of medical problems that will accompany it. We laughed at the Dr when he said she might need hearing aides after radiation -- huh? We've had those for 18 months! Dial em up we said. Heart problems, growth issues, thyroid problems, necrosis...its not a pretty list of what we might see. But once in the place we are now - we've decided that all those things are worth it if we get to keep her here with us longer...
So please send out your prayers for Dr Merchant and his team to make the right decisions for her in the treatment plan and for the radiation to do what we need it to do. Please pray for small side effects in the next 6 weeks and strength for Avery and her body to endure this toxic treatment. We pray every night to our Jude, hoping that his little presence in Heaven is the reason Avery is still here fighting with us.
Jenn
Monday, January 30, 2012
Arrived in Memphis
Yesterday we drove down and took the scenic route through rural Missouri and Arkansas. I had no idea Arkansas was so hilly! We made it into town about 6 pm and took Avery over to the Med Room for labs and check up with the dr's. This morning we got up early and were in diagnostics by 7:30 am for her MRI. St Jude tends to be protective over their info and wanted to do their own scans as well. Tomorrow we have appts with the Dr's again and Therapy. Wednesday we will meet with the radiation oncologist and do the simulation testing for the planning phase. As far as the rest of the week - well we really don't know as of yet.
Avery seems to be in good spirits and all her drs and the nurses have been very excited to see her. They all say the same thing most of you say, "look how tall she is!" To which we respond...nope -- same height as last spring. I swear the kid needs to grow just so we can say "I KNOW!" instead. For now we are staying at the Grizzly House but we assume they will be moving us to Ronald Mc Donald or Target House by the end of the week.
Jeremy and I are doing fine. The next few weeks will be tough as we won't be together but we'll get through it -- not the first time, but hopefully its the last.
Jenn
Avery seems to be in good spirits and all her drs and the nurses have been very excited to see her. They all say the same thing most of you say, "look how tall she is!" To which we respond...nope -- same height as last spring. I swear the kid needs to grow just so we can say "I KNOW!" instead. For now we are staying at the Grizzly House but we assume they will be moving us to Ronald Mc Donald or Target House by the end of the week.
Jeremy and I are doing fine. The next few weeks will be tough as we won't be together but we'll get through it -- not the first time, but hopefully its the last.
Jenn
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