Happy Birthday Ben

Happy Birthday Ben, you are loved and missed so much. 7 would have been great.

2 Years

Today makes 2 years since our life changed forever. Ben fought the best fight he could for 15 1/2 months. Now we try and carry on his legacy. Big Ben is building a bbq pit to take to fundraisers, Erin is loving St.Andrews, and Shaun is Shaun.

We all hope one day no families have to hear what we heard 2 years ago today but we will continue to fight for Ben's legacy.

Still Here

We are still here for everyone wondering. We have been trying to find our new life now without Ben. Shaun is doing well, and Erin and I are both back hard at work all of the time. Going through what we went through puts a new prospective on our lives now, so things are some what different. Erin has been very active through different Internet groups for DIPG families. I prefer to stay in the background most of the time.

Erin has accepted a new job. She will be teaching math and science to 6th grade students at St. Andrew the Apostle School near our house. Ben went to St. Andrew's as much as he could for kindergarten. I know it was difficult for the other kids and parents when they learned about Ben's condition, but they were a wonderful community to join. Mrs. Williams will always hold a special place in our hearts for the warmth she showed, us knowing she was welcoming a dieing child and his family.

Erin's dad had Aortic Valve replacement surgery the other day and is doing very well, so we are grateful for that.

Thanks for checking on us.

Much love
The Sarrat Family

CureSearch Walk

Hey Everyone

May1st will be the first ever New Orleans CureSearch walk at Audubon Park! It will be great fun and its a great cause. Ben will have a team walking...Pirate Ben Sarrat Jr Team! If you would like to walk please register on line and come on out May 1st!!! If you aren't local you can sponsor Ben's team or you can be a virtual walker! Here is the link for the walk

The CureSearch Walk: Conquering Children's Cancer Together:

Click on the walks section, select the New Orleans walk, and then choose Team Pirate Ben Sarrat Jr!!

We are doing well, well as well as can be expected. We have good days and bad days but mostly good. Shaun had a rough day the other day he was very angry with me for not going to bring Ben home. We talked for about an hour and then he said "Mom I'm not listening to you anymore I will just get Superman to bring Ben back" and that was the end of that!

Shaun is doing great at T-ball ( he's on the team Ben would have been on) he's a little young for the team, but he is doing great.

Hope everyone is enjoying all the nice weather!

Love to all
Erin

Phoenix Memorial Service for Lil Ben

Hello All-

We know Ben has touched lives across the world, but the community in Phoenix has been especially strong in supporting Grandpa and Grandma O'Brien. They would like to take the opportunity to share in Pirate Ben's memory through a memorial service with all of you. The details are as follows:

Lil Ben's Memorial Mass
St Gregory's Catholic Church

18th Avenue & Osborn
Friday April 9, 2010
5 p.m. Mass
Light dinner to follow immediately after Mass in Gordon Hall

Thank you once again for all the love and support you have shown to us all throughout these months.

Lots of love, Aunt Mego

Angel Jacob

Well its been 3 weeks since Ben's funeral. I keep meaning to post it just never happens. Its been a busy 3 weeks..

Ben and I went back to work full time on the 7th, nice to be busy but that 5:45 alarm clock is tough to get used to again!

Hogs for the Cause was a HUGE success far exceeding the $20,000.00 goal! We are so excited for them, they really pulled off a great fundraiser for DIPG. And next year is already shaping up to be bigger and better. Lots more teams interested. I plan on helping them out more next year and hopefully get the message of Childhood Cancer and DIPG more of a focus - we've got the people coming now we need to educate them.

We went to Michael Reason's Golf Tournament Fund Raiser. We got to spend a lot of time with Michael and his family. And the next day we all rode together with Chris Roberts in the Irish/Italian parade in Metairie! It was a lot of fun.

Tomorrow I will be flying up to Cincinnati, OH for Jacob's Celebration of Life Ceremony. 21 days ago Jacob was here, he spoke at Ben's service, and made sure not one person made it out of that church without having a good cry! He was such a special guy. I was so upset to hear he had passed Sunday morning. But I know Ben was definitely with him. Now the mischief those two get into may get them booted out of heaven!

Another local girl Arianna lost her battle last night as well. And Friday another little 6 year old girl was diagnosed at Children's hospital.

I will try and post a few pics from Hogs for the Cause. For those of you who don't know yet Ben has a team walking in the May 1st CureSearch walk here in New Orleans. If you would like to join his team and walk or just make a donation go to www.curesearch.org click on the New Orleans walk and chose Pirate Ben Sarrat Jr's Team! We (Ben Sr , Shaun and I ) wont be walking this year, we will be at a DIPG walk in Nashville, TN with our DIPG family. But I am helping with the committee planning the walk and I am hopeful we will change the date for next year so we can participate.

Well I'm off to bed...early flight tomorrow. Much love to all.

Erin

THANK YOU

Dear Friends

There is no way to thank you all for supporting us these last 15 months. Ben's service was beautiful today, thank you to everyone who worked so hard to make it happen.

Brighter Horizons - I can't say it enough you ladies are AWESOME!!! The slide show, the poster and the book were just wonderful. Thank you for helping get things done today. I owe you all so much. We are blessed to have Shaun cared for by such wonderful women, who I am proud to also call my friends.

St Andrews faculty and staff, thank you for all your hard work putting everything together for us today. It was so nice having you all there with us. And the PTA was wonderful putting together all that yummy food for after! You ladies work much to hard.

LA State Police, thank you for being there today, Ben would be honored. The slide show was just great! And the fly over was above and beyond. Thank you for all you did for Ben and our family and all you do everyday to keep us safe.

Thank you to all the doctors and nurses, at Children's hospital and Touro Radiation Oncology department. You all have been amazing over the last 15 months. What a blessing it was to be able to battle Ben's cancer close to home where he wanted to be!

Thank you to all of our family and friends who traveled from near and far to be with us. Thank you for the flowers and the cards. And I want to thank everyone who made donations to The Cure Starts Now and I Could Be Your Child in Ben's name - hopefully with more funding and more research soon no other parent will have to hear "your child has cancer and there is nothing we can do!"

And last but not least a VERY SPECIAL THANK YOU to Jacob Taylor, fellow DIPG warrior who traveled down from Cincinnati, OH to be with us. For those of you who could not make it today you missed an amazing speech by a courageous young man. Jacob asked to speak at Ben's service and Big Ben and I were honored by the wonderful speech he gave. He spoke with grace and maturity well beyond his years. For those of you who would like to support this amazing kid, here is his website...http://www.caringbridge.org/visit/jacobmatthewtaylor

It is now up to US to keep Lil'Ben alive in our hearts and in our actions. And so as a first step in building our new lives our family will be participating in the Second Annual "Hogs for the Cause" this Saturday May 6th! We missed last years event due to our amazing Make A Wish Trip, but we wouldn't miss this year for anything. Hogs for the Cause has fallen in love with Ben and decided to continue to support DIPG warriors and DIPG research as the "cause" - and we are honored. So join us next Saturday out on the Fly by the zoo for a great day of food specifically all things PIG! To find out more about this great event go to www.hogsforthecause.org also you can follow them on facebook! See you there!

Now, what to do with the blog??? Well for now we will continue to keep posting messages now and then to keep you updated with us, with other DIPG warriors, and other events and information in the war on DIPG.

Again THANK YOU THANK YOU THANK YOU we will spend our live trying to pay forward all your support!

Much love
The Sarrat Family
Ben, Erin, Shaun and ^Lil'Ben^(forever 6)

Memorial Arrangements

Dear Friends

Thank you for all your kind words, cards, and food! We are doing really well, it helps being busy.

Ben's Celebration of Life / Funeral Mass Arrangements:

Monday March 1, 2010
St Andrew the Apostle Church
3101 Eton St
New Orleans, La 70131

Visitation begins at 10am
Funeral Mass begins at Noon
Refreshments to Follow

In leiu of flowers we are asking people make donations in Ben's name to support Childhood Cancer Awareness and Research. The two organizations we support and recommend are

The Cure Starts Now Foundation
www.thecurestartsnow.org

and

I Could Be Your Child
www.icouldbeyourchild.org

We ask that friends and family coming in from out of town let us know you are coming, we would like to make arrangements to meet up with you. Also Big Ben's hotel, New Orleans Renaissance Arts has made arrangements for us to have hotel rooms for friends and family so please let us know so we can make you a reservation. The best way to contact us right now is email or text: erinandben@cox.net or 259-9351.

Ben's obituary will be in the Sunday edition of the Times-Picayune.

He Went Very Peacefully

At 2:10 am February 25, 2010 Ben Jr. took Jesus's hand and earned his angel wings.

Hello All

It was kind of a rough night. Ben spiked a fever in the middle of his second transfusion, so we had to stop it, he can't swallow anymore so he can't take Tylenol, so the only way to bring his fever down was cold compresses. But after the blood was tested and they checked his blood again we were able to start the transfusion again with a fresh bag, so he has gotten two and a half transfusions so far. They are going to do another transfusion here shortly. He is on morphine for pain and he is unresponsive. Every once in a while he will open his eyes and look around and sometimes answer a question with his eyes or a slight nod. But he appears to be resting comfortably.

Thank you for all the sweet messages, and support, we really appreciate it.

Erin

Resting

Ben is resting quietly now. He has had one blood transfusion and one platelet transfusion to try and bring his blood counts back some. They just started another 4 hour transfusion and then he will have more fluids and morphine. The doctors are planning more transfusions for the morning to try and get his counts up.

Ben is still waking up and looking around and answering questions with his eyes but quit trying to speak earlier today.

Hopefully after all of this blood he will come back around a little bit, but we just don't know.

A huge thank you to everyone who has been helping us the last few months and days when it has been really hard. We truly appreciate it.

A little more comfortable

Ben is feeling a little more comfortable. They started him on morphine to relieve some of the pain and now they have started him on blood and platelet transfusions. His counts are extremely low so it will be a slow process with multiple transfusions of both. This will hopefully help his body carry the oxygen that he is getting.

Change of Location

We decided to move Ben to Children's hospital early this morning. We were having an extremely difficult time keeping him comfortable over night. When we got ready to move him we found that he had hemoraged out of nose because of his low platelets, and his port was not functioning properly.

We got him into the last available room on 4west. That Dr. Velez has got some pull when she makes a phone call at 7am. They were waiting for us to get here. They have already fixed the port and we are now waiting on morphine to make him a little more comfortable.

We will try to update again later in the day.

Long Evening

Ben is now resting as comfortably as he can. His blood work came back not too good from the lab so the on call oncologist wanted us to bring him in to Children's this evening to give him a transfusion. That would be a difficult process because he would have to be admitted through the ER. Ben's doctor found out the exact numbers on the labs and thinks it will be better if we try to bring him to the oncology clinic tomorrow where they have there own infusion room and they can set it up for us ahead of time and get in and out as quickly as possible (8 hours). Erin and I have not decided if we even want to try and do that. Just moving him around in the bed gets his heart rate racing and makes him short of breath even on the oxygen

We are hoping for a quiet uneventful night tonight and maybe he will rebound some in the morning once he is done with this IV fluid infusion. Dr. Velez says she is going to make a house call and come see him sometime tomorrow.

Afternoon

The doctors have called the home health nurses back in now. They will access his port again to draw blood, make giving him fluids easier, and giving him any necessary medication easier. We think he will begin needing pain medication soon.

A New Morning

Hey Everyone, Ben is still fighting. We have now discontinued all of his medicine except his steroids. It is alot of work for him to swallow all of his pills. We are now spoon feeding him liquids the consistency of pudding. We moved his hospital bed into the living room now because it was too much work for him to sit up on the sofa so now we can just push the button and raise him up and down. He had a nice early morning visit with Mrs. Williams, Mrs. Hernandez, and Mrs. Hedlum from St. Andrews to brighten his spirits a little.

We Will update again later

No Ice Cream today

Hey Everyone,

No real change since yesterday. Ben hasn't wanted to eat anything but we have been getting him to drink a little. Had a visit from his good buddy Jackson today and that perked him up for a little while. Fr Paul came by and give him the anointing of the sick today. Just kind of hung out all day with family and friends.

Love to all
The Sarrat Family

Good day

Well its been a long, but good day. Ben has been awake here and there throughout the day. Even when you think he is sleeping he's not ...he's listening to everything around him and continuing to through out his T-shirt worthy one liners!

We had lots of great visitors today. Several of his buddies, Mitchell, Patrick, and Tanner can by with their families and we had a great game of Bingo...they all won it was amazing! All the local cousins came to play, and aunts and uncles, so that was fun as always. Grandma and Grandpa flew in from Phoenix and Aunt Mego and Mickey made it as far as Houston and will be here early Sunday morning. Ms Melanie and Ms Jessica were here most of the day and we love having them here to play! And our wonderful neighbors Ms Kim and Mr Tom were in and out all day. Thank you to everyone who came to see us Ms Rita, the other Ms Jessica and I hope I'm not forgetting anyone. Ben loves all his visitors!

So Ben heard his cousins were on there way and he asked when I was going to get his ice cream flavors today. For those of you who don't know Ben has a new friend Mr Chris who owns a 31 flavors. Mr Chris gave him a lifetime free ice cream pass, so the first time we went Ben asked what kinds they had I told him they had lots, that is why it was called 31 Flavors because well, they have 31 flavors...he then asked can I try all 31. I told him sure but not today, so we agreed we would make it our mission to try all 31! We had tried 7 before today. So he was sending me out to get two more flavors today, but Ms Melanie said she would go, and she came home with all 24 flavors we hadn't tried yet!!! So needless to say we ate ALOT of ice cream today. 10 more flavors down and 14 to go!!! When asked what his favorite so far is Ben can only mumble ALL! Thank you to Mr Chris and Ms Melanie for this fun diversion from reality!

Friends are welcome to stop by and see Ben in the next days, we just ask that you call first to make sure he is up for it. We are so blessed to have so many wonderful friends and family to support us through these last 15 months and this most difficult week ahead. Also a big thank you to my DIPG family and NOLA cancer moms you all have came to be so important to me!

We will keep you all posted as we can. Ben is resting comfortably right now, and I pray for an uneventful night.

Love to all
The Sarrat Family

Hanging in There

Ben is still hanging in there and fighting. His breathing has gotten extremely shallow. He is very in and out now and we do not know how much longer he will be conscious. We will try to keep everyone posted as we go.

Big Ben and Erin

Happy Valentine's Day

Hey Everyone

Ben wanted me to post a Valentine's message...

Happy Valentine's Day!!!

We are just laying low trying to recover from his RSV ans pneumonia still. On oxygen about 50% of the time, and confined to the wheel chair but still fighting.

Ben!

AWESOME DAY!!!

Ben accepting the proclamation naming Feb 6, 2010 "Pirate Ben Sarrat" day in Jefferson Parish!

Wow! We had such a great day today. Ben got to ride in Choctaw instead of Alla - they moved our float up! It was so much fun. Ben had a great time - he got a little tired the last half hour but he was up throwing treasures for about 1 1/2 hours (crazy amount of energy for him!). It was a nice day and the people on the float were so sweet about making sure he was having fun and comfortable. The float stopped at 2 reviewing stands...at the first they announced Ben was their special guest and because of his courageous fight they were naming Feb 6, 2010 "Pirate Ben Sarrat" day - in Jefferson Parish!! How cool is that we got a proclamation and everything! At the second reviewing stand in Gretna they made him an official Gretna Policeman he got a badge which he has already started arresting people with. He had alot of questions about when he used which badge - Gretna Police vs his State Trooper Badge!! What a great day made possible by Councilman Chris Roberts from Jefferson Parish!!!! Thank you Chris he had an amazing time - and he wants to know if they are going to throw a parade for him every year on "his day" - I told him I would see what we could do! HaHa!

So tomorrow is the BIG GAME!!! Ben is going to rest up till the game so he has plenty of energy to watch the game and bring them luck!!

Hope you enjoy the pictures!GEAUX SAINTS!!!!!
Erin






Ben on his last day of radiation (this time!)






















This is the get well chain he got from his school, each link is a special message from each child at the school! He loves it!






Ben riding today - throwing treasures!

Getting Ready for a BIG Weekend!!!

Hey Everyone,

Just checking in to let you know we are good. Ben is recovering, its a long process the RSV & pneumonia really did a number on his lungs. He has difficulty walking, he is very weak. But he is in good spirits, he went to school for a couple hours two days this week already. Ben is pretty much confined to his wheel chair, and requires oxygen every once in a while. We went to clinic today and had a CT scan and saw the neurosurgeon so it was a long day. His counts are good, his CT looked great the procedure is doing exactly what it was supposed to, plenty of space for CNS fluid to circulate. Ben finally got his stitches out of his head so that is nice, and his blood work was good so he doesn't need to be on IVs at night because he is really working hard to eat and drink well. We are taking today off and resting we had a long night lots of coughing and breathing treatments. And we are saving our energy for this weekend.

Saturday, Lil Ben will be riding Alla (a Mardi Gras parade - for all you out of towners - we do Mardi Gras for about 2 weeks not just Fat Tuesday!) as long as he is feeling up to it. He was invited by Councilman Chris Roberts from Jefferson Parish to ride on his float with him! Lil Ben doesn't know yet, we didn't want to get him all excited and then have to tell him no that morning if the weathers not good enough or if he is not strong enough. So that will be a great surprise for him! Councilman Roberts has been wonderful, he has arranged for a police vehicle to pick us up at the house just before the parade so we don't have to wait and park and weave through giant crowds, and the police escort will stay with the float so if at anytime Ben needs to get off they will stop the float get us off and take us home. It would be impossible for us to do this without those special accommodations. So come watch the Krewe of Alla here on the Westbank!
We will definitely post pictures!

Sunday, well I'm sure you all know what Sunday is.......YES the SAINTS ARE GOING TO WIN THE SUPER BOWL ON SUNDAY!!!! We are all very excited for this! We are planning on hanging out and watching the game, no giant party - but daddy is going to use our LCD projector and show the game on the garage door in the drive way, so it will be life size! Don't tell the NFL they will probably fine us for "rebroadcasting with out the expressed written consent of the NFL". Our neighbors are having parties so they should enjoy the outside broadcast too!

Hope everyone has a great weekend!

Erin

Home

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