Well its been a very long day. We just got home after 10 hours at Childrens hospital. The MRI went smoothly and Ben came through great. The result weren't what we were hoping for, the tumor is smaller but still very significant. Our oncologist feels we need to pursue a much more aggressive treatment than they can provide at New Orleans Children's hospital. It looks like we will either be in Memphis at St Jude or at one of the Texas hospitals by this time next week. We have lots to talk about and think about right now. We will be looking into all our options over the next few days and will keep you all posted on our decision.
Thanks for all the prayers, keep them coming we will surely need them in the next few days while we are making some big decisions.
Love Always
Erin and Ben Sr
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37 comments:
Erin and Ben,
Sorry the news wasnt what we all hoped for. I have faith that you will make the right decisions, and know that everyone here is praying for you guys and that we are here if you ever need anything! Thank you for keeping us posted when you have so many important things to take care of.
I love you all
I'm very sorry for this disappointing news. I will continue to keep Ben and your family in my prayers.
<3 Allie
(AmeriCorps Green 3)
Hey Erin & Ben,
I'm so sorry you didn’t get the results you we hoped for. We will pray that GOD gives you the strength and courage you need as you make this very difficult decision. Please know if you need anything we are a phone call away.
Always Believing,
Hank, Melanie & Kale
http://www.caringbridge.org/visit/kalebradford
Hi guys
I am very sorry that the news was not what we had prayed so hard for. Please know you are always in our prayers and we will continue to pray for you. May God give you the strength you need and perserverance to see it through.
Love always
The Brathbury family
Erin,
Thank you so much for the information. I know it's been a long day for all of you, that you took the time to post this is amazing. So many people have been wondering how you guys are. The tumor hasn't grown?! That IS a little bit of good news.
Texas or Tennessee - both good options. I wonder exactly how far Mr. Art would take us on a field trip?
Whatever plans you make - we are all here for you. And we will continue to pray for your family.
We love ya'll bunches - ANYTHING you need - just say so.
Ben, my man - tomorrow we are off to Riverbend to see "the old people". It's time for a parade!
Get some sleep because tomorrow we are going to pass a good time!
Love ya little man
(and that nutty brother of yours, too)
Ms. Mel and Ms. Jess
Erin and Big Ben,
I still say that the tumor will disappear. Thank you so much for keeping us posted. I've been thinking about you guys all day. I'm with Ms. Mel, we need to talk to Mr. Art about a field trip! Love you guys!
Our thoughts and hopes and love will be with you as always as you go on to Tenn. or TX. You've got a great cloud of witnesses right behind you figuratively holding your hands as you go through this difficult time.
Peg and Jack
lil ben remains in BIG prayers!!
your friend,
dari
Im sorry the news was not great. You will make the right decision. I will be pray for the best. Thanks so much for keeping us posted. Stay strong! love you all
Erin & Big Ben,
I'm so sorry the news is not what everyone was hoping for. There just aren't enough words to express how our hearts break for you guys.
But like Ms. Melanie said, there is still some good news out there. It's not bigger, right? So we'll just keep on praying and hoping and stay strong. Believe, believe, believe.
Love to all,
Camille (Patrick's mom)
The Sarrat Family,
You all are in our prayers.Continue to stay stong and have faith.
Anna loves her t-shirt and bracelet. She has shown it to everyone who came to visit today. She also told everyone about Ben and how cute he is. You brighten her day. Thank you.
I was thinking about you guys all day today. We will continue to pray for your precious boy.
Love and Prayers
Cindy and Anna
I will keep praying for all of you during this difficult time. My htoughts and prayers are with all of you.
Love,
Amy Peterson Welch
Love you guys. You are in our thoughts and certainly our prayers.
V, JP, and Q
I am so sorry that you did not get the news you were hoping for. I am glad to hear your doctor seems to want to get a head of this monster. I am not sure if you are aware but there is a yahoo group specifically for parents, relatives and close friends of kids with DIPG. To join you can go to http://health.groups.yahoo.com/group/DIPG/ and request to join. I will keep Ben and your whole family in my prayers as you make the difficult decisions in the coming days that no parents should ever have to make.
With love and hope,
Erika Hauschildt
A DIPG Mom
ejhauschildt@charter.net
Ahoy Ben,
Sound like you had a long day at the hospital and could stand to hear a few of our corny jokes. Here goes:
What's green and has four wheels?
Grass. We lied about the wheels!
What lies on the ground 100 feet in the air?
A centipede on its back!
Why can't you tell a joke to the ice?
It will crack up!
Adios Amigos!
Dave and Ginger
Dearest Erin and Ben,
We love you!!!
I believe along with Ms. Jessica that the tumor will disappear!Keep believing!!
Erin, what a long day you had. Thank you for keeping us posted. You are an amazing person!
Ben, have fun entertaining the "old folks" tomorrow morning!Tell your class not to tire them out too much because Mr. Doug and I are going to River Bend in the afternoon to help them play bingo and we don't want them to fall asleep on their bingo cards! lol
Love you bunches and bunches!
Mrs. Rita
Erin, Ben Sr. and family,
Know that there are people all over the world who continue to pray for you guys! What ever decisions you make will be the right ones because God will be directing and guiding you!! Stay strong and keep believing!!
Love and prayers,
Rita
Erin and Ben Sr,
We embrace you and offer you comfort as you make these difficult decisions. Know that we support and love each of you. You and your boys are amazing people who have captured our hearts forever. We pray that God continues to give you strength and courage as you face these difficult decision.
Our love and prayers,
Emma, Noah, Margaret & Rob Jaques
Erin & Ben,
So sorry to hear the news, it was not what we wanted to hear. Just know that you are all in our prayers and and we still believe in miracles. Ms. Rita was correct when she said you are one amazing person and because of that I know you and Ben will make the right decision in a few days. If we can do anything, please let us know. also thank you so much for keeping us all informed. We love you guys.
I am sorry the news wasn't what you were hoping for, but am so glad your oncologist is recommending more aggressive treatment and is willing to send you someplace to get it. As Erika said, the DIPG parents group on Yahoo is a good place to gain information about what other children and docs are doing. My son is battling a DIPG now -- if I can help in any way, please contact me.
Blessings -
Kim
Caleb's Mom
www.carepages.com/carepages/keepingupwithcaleb
kimspady@hotmail.com
Erin,
I am sorry that the results didn't yield you the shrinkage you were hoping for, please know that the radiation works well beyond when Ben finished his last treatment. But I do understand your frustration. My son Matthew's first post radiation MRI yielded shrinkage of 1/3. Please know I pray that the next course of action will help accelerate the tumor shrinkage.
I invite you to visit http://www.icouldbeyourchild.org, please check out all the sections on the site. There is a section "Other Kids" that list many other DIPG children and their sites. It is a wonderful resource so you can see what other treatments children are trying. I'm sure these families would be glad to help in any way they can. As I've previously stated, I am available to you anytime. I hope you will continue to lean on those of us in the Google DIPG group as well as those from the many other wonderful DIPG resources. The more information you can gather, the better educated your decision will be. Please lean on those of us DIPG parents who have been in your shoes and want to help you.
Please know that that all of the members from the Google DIPG Group as well as all of the DIPG community are praying everyday for Ben's complete healing. Like you, we simply won't settle for anything less. We are all family and families stick together.
Here if you need me.
God Bless.
Rich ~Angel Matthew's Dad~
DIPG Parent
http://www.caringbridge.org.visit/matthewmcgowan
I am sorry you did not get the results you were hoping for. Ben and your family is in my thoughts.
Erin Williams Glancy
Precious Pirate Ben is in my thoughts and prayers. I'm also praying for strength for you as you deal with everything and are making these difficult decisions.
Erin,Ben
Lots of love & lots of Prayers.
AND another Cowboy Joke for Lil Ben
How do cowboys mix the sugar in their coffee?
With a stirrup, of course!.
Erin, Ben, Pirate Ben & Shaun,
I think this is wonderful news because as my friend Eileen says "if it shrank a little it can shrink some more!!!!!!We just need to stretch our faith and increase our expectations." Eileen and her sister Deana both work at Audubon and our ordained ministers and they have lots of people praying for our favorite pirate!
Love,
Ms. Amy
Erin, Ben & Pirate Ben,
Please know that my thoughts and prayers are with you. I know this road is a very hard one to travel. Just remember you are part of a group that is here for you. If you should need anything please feel free to ask. With much love and hope for pirate ben
Annette (angel aimee's mom)
www.caringbridge.org/visit/aimeedickey
Ben and Erin:
I know this is a difficult time for you and you have some decisions to make based on what is best for your family and Ben's health. If Houston becomes a serious option please let us know. Aly and I both work in the medical center here and live nearby so we would be happy to help in any way that we can.
Love and support to you all.
Kim, Aly, Lorrie and Steve Yarnall
Our thoughts and prayers are with your family through this difficult time continued. From the looks of the comments on these pages daily, you have a TON of prayers and people who love and support your family very much. I will continue to pray and believe for Ben and the family. If there is ANYTHING that you may need, please ask.
Dawn Lewis & family
Benchu: what a long day you had, buddy! I agree with your friend Eileen about "if it shrunk a little, it could shrink more!"
You're such a strong boy!
tell your mom and dad they need to keep eating a lot of spinach, to be strong (like Popeye) through this decision time. As always, they will take the best one for you, you'll see!
Here's a joke for you. I cracked up laughing. I hope it makes you laugh too!
Q: What do you call a cow with no feet?
A: GROUND BEEF
Another...
Q: What color is a burp?
A: Burple!!
Love U tons!
Alex and Pablo.
Erin-
Thoughts and prayers with you and your family. Have faith....
Ana
Well...not great news, but Ben will get to see some different cities. And knowing Ben, he will get some new fantastic experiences out of the lemon...I mean situation.
Ben...Ian sent a new joke...
Why did the ghost measure himself? He wanted to see if he grusome! Still on the halloween jokes, I guess.
Love & prayers,
Michelle and the Nebraska boys
We are sorry about the crappy news- we are all hoping for better soon! Really glad that you had so much fun at Disney World- wish we were there with you. Please let me know if there is anything that we can do for you guys...we miss you tons!!!
Love, The Messengers
Erin,
I attend St. Gregory's with your parents and I used to work with Judy in the Madison School District. She just told me today about the younger Ben's battle. For what it is worth, we are putting Ben and all of you on our prayer list.
Peace and Good Health,
Tim Cothron
Thinking of you guys today.
Kim
Caleb's Mom
Hey Sarrat Family
I am a Child Life Specialist at Tulane Hospital for Children in New Orleans and I just got a forwarded email about the Hogs for a Cause fundraiser for Ben. Since I follow the hematology/oncology kids at Tulane, I was of course interested. I thought you might like to know about a fundraiser we are also having called St.Baldrick's day. The St. Baldrick's Organization is a worldwide non profit organization that raises money to find a cure for childhood cancer. Their slogan is "shaving a way to conquer kids cancer." Anyway, what happens is people volunteer to shave their heads and get their family and friends to sponsor them. All of the money goes to cancer research. Our St. Baldrick's day event is March 18th. So far we have over 90 med students, nurses, doctors and parents who have volunteered to be bald! We would love for yall to join us and its always a lot of fun! Please email me if you have any more questions or if you are interested.
Good luck in memphis or texas!claire.keller@hcahealthcare.com
ps. did i mention that our event last year raised over $$63,000!!!
Not happy about the news! Know that you are in our prayers and we know that you will decide the right path to take. Keep the faith!!
Love,
The Thompsons
(Graci)
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Your blog keeps getting better and better! Your older articles are not as good as newer ones you have a lot more creativity and originality now keep it up!
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