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
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19 comments:
Hey Ben
It's Mrs.Tammy. Sorry I have not written in a few days But I have been a little busy too. We had my whole family at my house on Thanksgiving and when they left we crashed too. On Friday I went to visit some elves real early in the morning to talk about Christmas. Saturday we had a lot to do also. You have to be excited that your birthday is just a few days away. We can't wait to see you. We will be there a little late because Kaci made the Homecoming court at her school so we'll be at her school first to see if she wins.
See you soon and we love you.
The Brathbury Family
OK, Ben, I know you're birthday is coming up this week--the big 5! So I found a pirate/birthday joke for you just a little early: What's a pirate's favorite part of a birthday party? Da Balloons! (Get it? Doubloons!)
Looks like we may be a day late starting for New Orleans because of snow predicted through southern Wis. and through Illinois. It's all hurry up and wait.
Love ya,
Megan's Mom, Peg
Good morning to the greatest pirate in the whole world! Only a few days and you'll be the "big 5" How exciting! I'll see you than and I can hardly wait!! I'm glad you helped Virgina open her presents, because 2 year olds, just can't handle that job.Have a wonderful day, and cheer for the SAints! God loves you and so do I!
Mrs. Rita
Thinking of you all!
Erin
Happy belated Thankskgiving, Ben! It sounds like you and your family had a great one with tons of yummy food. I even noticed in the picture that your brother Shaun's pants were unbuttoned he was so full! I am a bit late on the Thanksgiving day joke, but it should still be just as funny on November 30th.
Q: What happened when the turkey got in a fight?
A: He got the stuffing knocked out of him!!!!
You amaze me Ben!
Love, Jill
Hey Ben
Hope you had a great Thanksgiving!! Gavyn ate a lot of turkey and i bet you did to. So i hear your birthday is in a few days and you will be "5" years old. That is awesome. You guys are getting to big to fast!! Cant wait until your party. Good luck with your chemo and radiation tomorrow. Hope to see you soon. Lots of love and prayers!!
Gavyn and his mom Sabrina
What did the Bison say to his son when he was going off to school? Bye son. Ha Ha Love Ms. carol
Hi Ben! Sorry i havent written to you in a couple days....Gosh its been busy with family in town for thanksgiving! But its all over now...and we have something to look forward to--your birthday in 4 days!!!!! I bet youre excited about it and I also bet youre excited about that pizza eating contest. I think you gotta good chance at winning! Well you keep being a good lil pirate for mom and know that we are all thinking about you and praying for you!
Love you man
Hey Ben,
I'm glad you had a good time at your cousins birthday party. I bet you it was really fun helping her open her presents, but just wait only 4 more days and you will get to open up your own presents. I'm glad I to got to see you today, Ms. Jessica missed you over the holidays. I will see you soon! Good night and I love you!
Ahoy Ben,
Hey good buddy - that pizza on your website the other day was the hugest pizza I've ever seen! How in the heck did you eat all of that????
Here is something we know.
How much does it cost for a pirate to pierce his ears?
A buck-an-ear Aaaaarrrrrrrhhhh
Much love to you and your family!
Dave and Ginger
Hi Ben,
You don't know me but I have added your name to my daily rosary. I hope you are feeling better soon. I hope you have a GREAT birthday, too!
Yvette
Hey Dude -
I sure wish we could have seen you on Thanksgiving! Your Uncle Peter and I, and your cousins Andy, Lauren and Abby had Thanksgiving at home in Maryland. It was just us and we sure missed you and all your other cousins. I'm glad you had fun helping Virginia open her birthday presents. You're next, big guy! We sent your present to Grammy and Pop Mickey's to hold onto until the big day later this week. Love you!!
Hi Ben,
You've had a busy Thanksgiving week! I thought you left your evil twin Lem at the hospital but he must have figured out where you live. He probably followed the pizza man!I hope you have a very happy birthday this week being five will be awesome.You should save all the jokes on your blog and write a book some day. I know I will never run out of jokes to tell again. I bet your Mommy could use a dacquiri by now if she tells you her favorite flavor I bet I can arragne to drop one by and maybe a milk shake for you and Shaun too!
Love,
Ms. Amy
Good afternoon Pirate Ben- I was just catching up on my reading and wanted to say Welcome to your Birthday Week- I can't believe that you are going to be 5...what a big boy!!!
Well, we are thinking of you and your family all the time. I am so glad that you are doing so well and I am sorry there are side effects. Leg pains are no fun!
Hang in there and we miss and love you tons!!!
Love, The Messengers
Hey this is Marcus, I had Leukemia at the age of 3 and I am now 13. I had those ugly mouth sores too. Try to use that maylox/benadryl mix they give you alot as it will help alot.... Eat lots of ice cream that helped me too....I hope you feel better soon and enjoy your day at school.
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