Okay so I know I was saying we would have a plan by today but guess what not yet!! Its okay though we can't start anything until next week all the plans we are looking at requires 4 weeks off Avastin and for us thats next Wed - I think I thought September had more Wednesdays than it did - oh well.
So we have to say a BIG thank you to friends and family who have been helping us explore all possible treatment option for Ben! Originally we were told the study we were interested in in TX was closed but after a few phone calls from a very loving family member it looks like now we may be able to go there!!! In the mean time another group of wonderful friends in Cincinnati from The Cure Starts Now helped get us in touch with a researcher there who may have 2 good options for Ben! And to top it all off my company (Audubon Nature Institute ) has the most amazing health insurance - both of these hospitals are considered "In Network!!!!!!!!" so if we have to go to either place off study most of our medical bills should be covered!!!!
In addition we are interested in a study at NIH in DC we are hopefully getting on the waiting list but that wont be available till Nov. But everything is still up in the air!
So we wait and hopefully should hear from all these places before the end of the week.
On another note we need to Thank the St Andrews families that have been providing us with meals for the last week! They are delicious and you have no idea how helpful it is while I am constantly on the phone or the computer hunting down options for Ben! And to all the families at St Andrews who have been so supportive THANK YOU! We have been so blessed to have so many people in our corner for this journey. Brighter Horizon's families have been there since Day 1 with anything and everything, Sacred Heart and Stuart Hall families who did the first round of dinners back at the time of diagnosis, friends and family from all over the country with encouragement and prayers, and of course my DIPG family some whom I have been lucky enough to meet and others who I only know through the computer (AMAZING people with AMAZING children) we can never say THANK YOU enough! We have our work cut out for us to pay it all forward - I have no doubt that we will but Ben and I will have to live to be 100 to make that happen - so we better start taking better care of ourselves!
Ben is doing well, he has double vision more, and walking is becoming more and more difficult, he has been falling a lot and that scares him so he likes to have mom around - which I enjoy too! We may need to think about getting him a wheel chair in the coming days. He is fine around the house and the classroom but anything more than walking out to the car is too much for him. But he is still his happy, crazy loving self and we are so glad for that - he gets frustrated but it only lasts a moment or two.
We will update when we know more!
Lots of love
Erin
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10 comments:
Erin,
We are so glad that good options seem to have come about for Ben's treatment. You are so right about persistence.
When Jay's Mom was fighting Medullary Thyroid Cancer, it seemed like he was always on the phone with MD Anderson, the local docs or the insurance company.
Jay and I just got home for a night on the coast, and my mother was babysitting. She had to call to tell me how touched she was that Julia Grace prays for Ben at every meal and at night.
I also got a note from my nephew in St. Paul praying for Ben and you all. My sister had forwarded it to him from Mississippi. Soon we'll have all 50 states praying for Ben's miracle !!!
Hang it there! Janel Fielding
You are all amazing. Good luck with these new options that are showing up. We are praying for you and inspired by your wonderful positive energy.
Beth Nazar
We are praying that many options for treatment continue to appear. All of your research will show you which one to choose. Your family's strenght courage is amazing. Love the Freemans
We will keep praying for Ben remember prayer changes god is in control.
KW Parent
Lord, I pray for Ben, your Word says I should pray for his healing. I believe you hear this earnest prayer from my heart and that it is powerful because of your promise. I have faith in you to heal Ben, but I also trust in the plan you have for his life. Lord, I don't always understand your ways, and why Ben, and his family has to suffer, but I trust you. I ask that you look with mercy and grace toward Ben and his family. Nourish their spirit and soul in this time and comfort them with your presence. Let my little Ben know you are there with him through this difficulty.
We love you!!
Love and Payers,
Hank, Melanie & Kale
Glad to hear that things are starting to look up!!! These options are positive, which match the spirit and strength you all show!!! We are an inspiration to all families - not just ones with sick kids!!! You make me appreciate the health of my children more each day. My thoughts and prayers are with you in your journey!!! Ben is my HERO!!!!
Sharon Williams
Thanks for the update; so glad you are seeing some positive movement!! Remember if you need ANYthing; we are here! Prayers continue for you all!
Jimbo and Lisa Coarsey
Please Jesus, Please heal Ben, so that he may be a testimony for you. Please Lord, open every door that needs to be opened, when it needs to be opened, for him to be cured. Please fill his family with grace and peace and help them to enjoy every day to the fullest. Thank you Lord for giving my family this most awesome opportunity to pray for this precious child and family.
In Your Name,
Amen
Thinking of you guys!! Give Ben a big hug for me and Uncle Peter and Andy and Lauren and Abby. Let us know if we can do anything for you, especially in regards to NIH - if you need us to go there or call people, just let us know as we're close to same. If you end up accepting at NIH, please know you have a place to stay!!
Love to you and Ben, Robyn
please know that we are all praying for ben and his family.thankgod thereare options. please know we are here if you need anything. Maddie will be back soon . I pray the end of her treatment is truly the end. praying for you all. hugs susan maddies grannie
caringbridge.org/visit/madsionboudreaux
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