Missing Days

Hello All

Sorry for not keeping up. We have had spotty internet service for the last few days. Ben's doing okay, we've had a few rough nights. Ben is now starting to feel the effects - and side effects- off all the medications he is on. He has been waking up in the night with leg pain, and has trouble walking during the day because of the leg pain (chemo side effect). And yesterday morning we discovered he was getting mouth ulcers (radiation side effect). Ben is still in good spirits he is just really tired all the time (another radiation side effect).

Yesterday he went to his cousin Virginia's Birthday party. She is 2! He had a great time helping Virginia open her presents and Shaun had a great time playing with her presents!

Four days off from radiation has been great but its back to the hospitals tomorrow in the morning for radiation and in the afternoon we have to go to Children's for more testing!! We have gone to a pill form of the steroids now so less fights about the "yucky" medicine. And in three more days we lower the dose again. We are hoping to be off steroids by the end of the week. That may not be possible because the radiation causes swelling - but we want to try. The weight gain has been crazy and we have had a few episodes of "roid rage" so we would like to take him off them it just may not be possible.

We want to again thank everyone for their love, support and prayers. We are truly blessed to have such wonderful friends and family.

Please keep praying for our miracle!

Love you all
Erin

Pizza Lover

hi everyone-
so i've heard that lil benno has recently gotten back his appetite. now this is probably a good thing but from this picture i wonder just how much more he should be eating. he ate this whole pizza by himself 2 summers ago so any more might be a little much. oh well, boys will be boys. ok, so maybe he shared a slice of this pie with his aunt mego.
but hear this now, i am challenging lil ben to a pizza eating contest. ben, i will be in new orleans in a few days so save up your appetite and we'll eat pizza until we puke.
aunt mego
ps, only 5 more nights until you wake up 5 years old!!!!

THANKSGIVING!!!

Happy Thanksgiving Everyone - I had a great day. All of my family who lives in New Orleans was here including 8 of my cousins. We had a great time and ate lots of food! As you can see from the picture we crashed pretty hard after it was all over. Hope you all had as great a Thanksgiving as I did.

Love you all

Lil'Ben

Our first day at clinic

Well today was our first "clinic" day. Everyone warned me it was bad, and they were right. I had to get my blood drawn and I had to sit in the waiting room for 3+ hours. But Doc says I'm doing great, and I get to reduce my steroids again on Friday! Because I was so good my mom said I could pick where we went for lunch and I picked Burger King. It was soooo good.

Love lil' Ben

Shaun wants to say ---Go Alabama! and Phineas and Pherb is his favorite show.

We are looking forward to a great Thanksgiving, and wish you all a great Turkey Day!

Ben & Erin

Ben's Jokes

Okay no big news today, doing great with our meds. Steroids down to twice per day - we are very excited about this. Ben has gained 4 pounds in the last week, he is getting cute pudgy checks like when he was a baby. Ben has some jokes of his own he would like to share - unfortunately I don't think we can blame these on the meds I think we have to blame these on being 4! Here goes..

Q: Why did the rat live in the box?
A: Because if forgot to come out

Q: Why doe the singer sound like an animal?
A: Cause it ate to much breakfast

I'm sure you are laughing your heads off!

Love ya
Lil' Ben

Lazy Day

Lazy day today. We all went out to breakfast and then Ben went to radiation. I spent the rest of the day laying around watching the adults reorganize closets and getting my new playroom set up. Then I had a few visitors this evening and we had marshmallow gun wars. I fed my neighbor Ms Kim's fish and that about it for my day. Hope you all are good.

Love

Lil' Ben

Fun Day

Didn't have to go to the doctor today! I went to Jackson's birthday party - thanks for inviting me Jackson I had fun. I can't wait till you have a party again. I ate 3 pieces of pizza - and didn't have room for cake.

Thats all for today - written 100% by Ben

Love Ya
Lil' Ben

Mom, Dad & Grandma did lots of work today - we set up new beds for the boys. Moved closets, set up the guest room with a real bed and moved the office down to mom and dads room. Thanks for the help Mr Billy! All things look good today. Getting our meds schedule down and eating lots - we are all blaming it on the steroids but Ben is the only one taking steroids so I'm not sure why the rest of us are eating more than normal!

Thank you all for your kind emails and cards, please know we are greatful for all your good wishes and prayers!

Love you all
Erin