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

Special Visitors!!

Guess who came to see me today...The Imagination Movers!!!! It was sooo cool. My teacher Ms Jessica brought a few of my buddies over, and My Aunt Julie brought my cousin Olivia over. And then there was a knock at the door and I opened it and I couldn't believe my eyes. How did the Imagination Movers get out of the TV? I'm still trying to figure that one out. They brought us all posters and CDs and we sang a bunch of songs. I got a little tired during the middle of our show, but it was so awesome.

Tomorrow I get the day off no radiation. I'm going to my buddy Jackson's B-day party- very excited. I can't wait to eat Jackson's cake! My mom and dad are moving furniture around the house because my brother and I are getting to share a room now. And my old bedroom is going to be a special play room just for me - germ free when I need it.

I went to work with my mom for a few minutes today so she could get some work to do at home when I take my naps.

Its great being home!
Love ya
Lil' Ben

GOING HOME!!!

Best day yet, I got to go home!!!!!

I was giving my mom a lot of trouble last night taking my meds in applesauce, so she said I can try and swallow the pills - that worked great so I don't have to taste that "disgusting " applesauce anymore. In fact I will probable never eat applesauce again.

So it took two big Mayflower moving trucks to take all my stuff home - okay not really but I sure had a lot of new stuffed animals and cool toys from so many people who came to visit me.

I stopped by school this afternoon and said hi to all my buddies, and mom and dad let me order my favorite dinner for tonight. Pizza from the Pizza man (Okay so its Papa Johns but we call him Pizza man).

I sure do feel better being at home!

Love ya
Lil' Ben

Who gave the animals computers?

Okay my mom is thinking that they are having way too much fun at her work without her, because somehow the lion Jonny Dolar got ahold of a computer and sent me a message. She is not sure how that happened but it must mean Ms Carol is up to no good!

Ethan came to play today!

I had another great day. No anesthesia for radiation, and I took all my medicine by mouth nothing through the IV - that means they will take it out tomorrow and I get to go home!!!!! YEAH!!!! I also went to see the eye doctor this afternoon, "Lem" tried to come too but mom said he had to stay in the room and go to time out! It turns out I may not have had as many visitors as I thought - I have double vision in my left eye. The doctor says if I keep taking my medicine and doing my new eye exercises that when my "owwy" shrinks that should clear up. But most pirates only have one good eye anyway!

I have made lots of good friends on 4 west so I will miss them. This is a picture of my favorite day nurse Ms. Tina. She has taken care of me almost everyday I was here and yet somehow avoided giving me a shot or placing an IV. She is very sneaky that way.

Thanks to everyone at the Audubon Zoo who donated blood in my name today. I know how yucky needles are so that was really sweet of you, I hope I don't need it!!

Thanks for all your messages, I read them every morning before treatment and every evening after meds.

Love you all

Lil' Ben

2 days down 40 to go!!

Had a great day today - didn't need any sleepy meds (anesthesia) for radiation today. I laid in the radiation bed and didn't move all by myself for the whole 7 minute treatment and all the nurses and doctors were very impressed. My cousins came and visited me this afternoon, and Ms Jessica, my teacher brought my buddy Patrick to see me. I also got to meet some new friends. The physical therapist, the occupational therapist and the audiologist. I had fun with the PT and OT ladies but I wasn't very nice to Kristin the audiologist so I have to apologise to her tomorrow. She kept shoving things in my ears and I was tired so my evil twin "Lem" refused to take the tests and we failed - I think they will let me try again tomorrow.


I had no idea there were so many great jokes out there!

Love ya

Ben

Treatment Day 1

Big day today - I started radiation and tonight I try my new chemo drug (in applesauce!) Its going pretty good right now. I am walking great again and took an ambulance ride to get my radiation they even turned the sirens on. There are pretty cool things about being in the hospital...1 - you get to pick what to eat for each meal and you can eat it in bed watching TV if you want. 2- all the juice you can drink (any flavor) 3- lots of friends come to visit and play 4- STICKERS - lots and lots of stickers.


Excited about maybe going home on Thursday!!

Love you guys and thank you for all the funny pirate jokes -I love them!

Lil' Ben

A Pirate's Party

Hey Everyone!

I had quite a day today, one of my pirate buddies heard I was in the hospital and decided we needed a good old fashion pirate party!

His name is Pirate Papillion and we sang several pirate songs and danced pirate dances! It was awesome. If you want to check out the cool pirate who came to visit me you can go to www.kidpirates.com - He made me an official member of the Kid Pirate Crew!!

I had a lot of great friends with me for my pirate, and all my New Orleans cousins were here too! I start my new medicine tomorrow so we will let you know how that goes.

Love ya
arrrrrr
Lil' Ben

The Medical Story

As many of you know by now Lil' Ben was diagnosed Wednesday 11/12/08 with a large tumor on / in the brain stem. We first started noticing a problem in late September. Lil' Ben was much more tired than usual, moody at times and was loosing weight. I took him into the doctor and they ran blood and urine tests which all came back "normal". Not convinced everything was normal Big Ben and I kept a close eye on the little man and after another 10 days with no improvement in energy level we took him back in to the doctor. He told me he was fine and to come back for his 5 year old check up and shots in December. As you can imagine I got an appointment for a new pediatrician - I'm not one who takes kindly to being dismissed as an over reacting mother! So we had an appointment with a new pediatrician set up for Wednesday the 12th in the afternoon but Tuesday Lil' Ben woke up saying he didn't feel well and seemed off, so I took him to work with me to keep a closer eye on him.

He was a huge help, he helped give one of our sick goats her medicine, he helped move "Sammy" the clouded leopard to her new enclosure and he learned to speak clouded leopard, which he is quite fluent in now!! By 4pm he started holding his right arm against his side and limping / dragging his right leg a little. We called our current pediatricians office, since we had not seen the new one yet and they said to keep and eye on him and come in tomorrow if he was still doing it - well by 6pm Big Ben and I decided to take him to the ER at Children's Hospital. Lil' Ben and I went to Aunt Dr. Steph's house first to make sure mommy wasn't truly crazy with her assurance that no we weren't crazy we proceeded on to the ER. During our long ER visit Lil' Ben's symptoms began to worsen quickly. By the time we were admitted to neurology that night he could not walk with out falling and was talking like Elvis out of the corner of his mouth. We were scheduled for an MRI early Wednesday morning.

The MRI went well, our biggest obstacle was giving him the IV - Ben's not a fan of needles! But the test went off with out a problem and I was fully prepared for the Doctors to come tell us he had had a stroke. Not what I wanted to hear but hey that is manageable, rehab, meds etc.. not impossible. At 1pm the hospital social worker came in the room and told us the neurologist wanted to speak with Big Ben and I in the conference room - just for the record that is never a good sign. When we walked in there were about six doctors sitting around the table who looked like they were even terrified to be there. We sat down and the Neurologist just came out and said no easy way to say this "Ben has a large inoperable tumor on his brain stem".

Okay so NOT prepared for that one. Once the room stopped spinning she explained that these types of tumors did not have a good prognosis and that Ben would be transfer ed to the Oncology service because there was nothing surgically they could do. We went back to Ben's room shaking and feeling like we had been thrown into another dimension of the time space continuum. The grandparents and aunts and uncles were all called. 1pm Wednesday the 12th our lives changed forever.

After a few tears and several times asking"Am I awake or is this a dream" we started our quest for our miracle. We started calling around for second opinions (even before we had our official first opinion!), prayer chains started literally all over the world and in more religions than I knew existed! The official diagnosis is Difuse Pontine Glioma.

And then came the parade of doctors...

To confirm what our neurologist said, the Nero surgeon stopped by and said no surgery, no way , no how. Then we saw every level of the oncology department from the students to the interns to the fellow and finally late that evening we met with our Pediatric Neurooncologgist (Dr Valez) and she laid out our options for treatment. Thursday afternoon we met with our Radiation Oncologist (Dr Zacharus) from Touro hospital.

So Thursday evening Big Ben and I began the process of deciding how to treat him. We have had a consult from the doctors at the Barrows Neurological Institute in Phoenix - they agree with our doctors here in New Orleans. Just this morning we got our consult from St. Jude's hospital in Memphis, they too agree with our doctors hear in New Orleans and feel that we are in great hands and are receiving top notch care. So we will start treatment on Monday, he will receive 6 weeks of radiation (5 days per week) and an oral chemotherapy drug for 6 weeks as well.

So those are the annoying details. We wanted to lay it all out for everyone because we know how unbelievable this is. The rests of our posts and this web page will be dedicated to our pursuit of our miracle and our AMAZING SON BEN!!!


Keep us in your prayers!

Love Erin and Big Ben

Pirate Ben

Well here it is, Ben's first blog page.

He's a little boy with a lot going on so we thought this would be a good way to keep everyone in the know about him. Erin and Ben will be updating this as they can on any news and information about our little man. I will leave it to them to disclose details and updates, but for the rest of us I encourage you all to post messages to Ben and share fun stories to keep us all in good spirits.
We all love Ben so much and are praying hard for him. He is on the minds of everyone we know right now so let him know you are thinking of him as I'm sure he will get a kick out of getting mail from everyone. Send me any fun photos you have that you would like to share- there are plenty of him out there being the little rascal he is.
Thanks for all the support so far- we are all truly blessed to share in this community of family and friends.
That's it for now,
Aunt Mego
mego25@hotmail.com