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Hey Everyone

Sorry for not posting sooner just trying to get settled in and set up with all the new equipment. We came home late Tuesday afternoon. We had the last day of radiation yesterday and then doctors appointments, so today is the first day I've had to set things up and get us settled in.

Ben is doing good. Not quite up for school yet, but he says he wants to go full days not just for a few hours like mom suggests - so we will see. He is on an IV pump all night to give him fluids, he gets breathing treatments every few hours and requires suction several times trough out the day to help him clear his lungs. He has his port accessed all the time now so I can hook his IVs up at night. He is having more troubling getting around, he is very weak and he has very little lung capacity, but he is getting stronger every day.

He had a great visit from his teacher, his principle and a few other special teachers from the school. They brought an awesome card chain with a link note from every student at St Andrew's all 800!! And they have set it up so his he can see his class and they can see him through the computer - kind of like skype. Its fun, he loved seeing all his buddies.

So now we just need to build up our strength again and let that radiation kill the tumor!!! Have to be strong for the SUPERBOWL!!!! Thats right Ben's Saints are going to the SuperBowl for the first time!!! We think its because Ben did those tackling drills with them at the beginning of the season and picks some really great plays that Coach still runs. We are very excited - we definitely have SAINTS FEVER here!!!

We'll update again later! With Pictures!

Erin

Another few days

So we finally got to see Dr Velez today, yeah!!!! We love Dr Velez and hate the rotation system here - its stupid! But we talked with Dr Velez today and she thinks Ben is doing great. She is more worried about his nourishment than his breathing at this point. Because of the loss of his swallow reflex we can't let him drink thin liquids or crunchy foods so he's on a soft think diet so he doesn't aspirate. And he is not a big fan of the thickened liquids - so she wants to make sure we can get into him what he needs otherwise we will need a feeding tube.

So it looks like we will probably be here till Tuesday getting those things worked out. But he he is doing good so thats okay we will watch the SAINTS game tomorrow and scream really load no matter where we are, home or here! Ben is off oxygen and tomorrow they are taking him off IV and we will see how he does.

We'll let you know when there is more news. Sorry for the brief updates but Mr demanding is addicted to computer games now so I have to wrestle it away from him in order to post!

Erin

Doing good...still at the hospital

Big Thank You to Aunt Mego for doing the last update, we were a little busy and no Internet in ICU.



Ben is doing well, we moved out of ICU on Tuesday evening. He was still positive for RSV so we went to 4 center instead of 4 west the cancer floor. He is still on oxygen but doing really well. Actually he is yelling at me to give him the computer right now so he can play games!



He has been continuing on radiation we go by ambulance from Children's to Touro everyday. He had to stop his chemo temporarily due to his low blood counts. He had a transfusion the first night we were here so the counts are rebounding. He did a swallow study yesterday to figure out what types of foods he is aspirating on and which ones are safe. This is all tumor related and something we expected. He now can't eat or drink anything thinner than honey, and no crunchy things. So that is manageable. They gave us thickener and we have been testing out all our favorite drinks to see how they taste thick, so far our favorites are lemonade and chocolate milk.

Ben has a pulmonary function test and consult with a Pulmonalogist to sort out what is tumor, what is RSV, and what is because of the aspiration. Then we can try and get his breathing as good as possible and get him out of here.

Thank you to everyone for all the prayers and support. Thank you to our neighbor Ms Kim for spending the day here Tuesday taking care of Big Ben and I while Ben was in ICU. The trashey magazines have been a big hit with the night nurses too! And HUGE than you to the wonderful Ms Jessica for taking such good care of Shaun while we are here with Ben. He is having so much fun he didn't even want to go home with daddy last night!

I'll update agin soon.

Erin

Trip to Children's Hospital

Hey folks, Aunt Mego here.
Erin asked me to share a short update. Some of you may know that Ben aspirated at home and was taken to the ER yesterday afternoon by ambulance. He was admitted to the PICU for monitoring last night. Now for the good news, he is doing really well now and they are planning to transfer him to 4W today and keep him for a few days. Erin asked me to update the Blog as she knew lots of us would be worried about him this morning and she can't update it right now. As always, keep lil Ben in your hearts and prayers. More to come later when he is back on 4W with his favorite nurses.
Love Aunt Mego

Radiation went great!

Today was Ben's first day of radiation. He did set up on Monday, but today was the first treatment. So we made a day of it! He went to school this morning and then we left at lunch, went to radiation and then went to daddy's restaurant for lunch! Big Ben and I had to talk him into it, he wanted to go back to school - go figure. He had a great time and ate tons!

So we have changed his radiation time so he can go to school almost all day and then go to radiation! He will miss nap, and packing up at the end of the day, and maybe a story or two (but don't tell him about the stories or we will have to stay ALL day and pay the Radiation Team OVERTIME!!)

Please keep another DIPG family in your prayers tonight, Little Georgia from Australia earned her wings, unexpectedly today. She was quite a fighter!

Radiation...Take two!

Hello all!

We just returned from meeting with Dr Z (Ben's radiation oncologist). He made his mask and we are all set to start radiation on Thursday. He will go for 10 treatments. Ben's doing good, recovering slowly from the RSV- which as it turns out is much harder on him than brain surgery! His surgery site looks great and he tells everyone he was wounded in a pirate sword fight. He is still getting breathing treatments every few hours around the clock, so mommy is pretty sleepy, Ben sleeps through them but I haven't figured out how to automate the machine to refill itself and switch on and off every four hours, so mommy doesn't sleep through them - oh well its like those first few weeks with a newborn!

We are going to go back to school tomorrow. Ben is up for it and we have scheduled his radiation appointments for afternoon so we can do the morning at school and then go to radiation at lunch and then home to nap before we go get Shaun. We are hopeful radiation will give us the same great results it did last time.

Besides the fact that it is FREEZING in New Orleans (we are still considered the South right??!??) we are doing good, and having fun as always. We will post again soon!

Much Love
Erin

HOME AGAIN!!!

We are home!!!

Ben sweet talked Dr Singleton into let us go tonight! We pulled out of the hospital at 8:45pm!! Its great to be home. Ben still needs round the clock breathing treatments and meds but its much nicer doing them here at home then at the hospital.

Its been a long day and we are tired soooooo.. GOOD NIGHT!

We'll keep you posted but Ben is planning on stopping into school for a little while tomorrow and he is definitely not missing his field trip on Friday he tells me!

Erin

Out of Surgery!

Hello All

Ben is out of surgery, he is chatting up a storm. He wants Burger King and to go to the playroom! The surgeon said everything went great. It was textbook, no complications. So we are very grateful it all went well.

Thank you to everyone who came to be her with us. Grandma Judy, Grammy & Pops, Ms Jessica, Ms Jackie (angel Carl's mom), and Di Lipski (angel JJ's mom). JJ's mom came all the way from Alabama to see Ben and wait with us - I love my DIPG family!!!

More news to come, but hopefully we will be out of here in the next day or two and start radiation by the end of the week.

Thanks for all the prayers today!

Erin

Surgery Morning

Hello Everyone,

Well anesthesia came in and gave the go ahead for surgery. Ben is in a great mood and playing Candy Land right now. They think his surgery will be at 1pm so they will probably go down around noon. Set up will take about an hour and surgery will take about an hour and then recovery. So he should be back in surgery for about 3 hours. If he wakes up well from anesthesia and is breathing well he will come back to his room. If not he may spend the night in ICU.

Lots of prayers, happy thoughts, and good juju needed today!
I'll keep you posted!

Erin

Our little Germ Factory!

Well as it turns out Ben does have a respiratory component to his breathing problems. Ben has RSV!! So we had to move off 4West, the Oncology floor. Its not safe for him to stay on that unit with all the imunocomprimised kids and especially the bone marrow transplant kids. We will miss all our buddies up there but we would never want to do anything to make any of them sick so we got transfered.

The nurses thought it would be funny to play musical rooms with us. They sent us to the third floor and after about 45 minutes they came back and told us we were moving to 4 center. Thats the neurology floor, where he would need to go after surgery anyway so I'm glad we wont have to move again.

We had to cut back on our visitor plan because of his RSV so he is a little sad. He was thrilled his buddy Jackson and his brother came up, they were such great sports because they had to wear a mask in the room. Ben has been sleeping off and on watching football all day.

It looks like the Monday procedure may have to be postponed a few days because of the RSV. We are waiting on anesthesia to make that call, but they aren't really around right now because of the holiday, so we have to wait and see.

Erin