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
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13 comments:
Ben you are truly amazing. The bravest little boy we know.
Love Grandma and Grandpa.
Hey Ben - Love the pirates' outfit!
Lots of love!
Dave and Ginger Baron
Dear lil' Ben,
You have some amazing parents! They will get your family through these hard times with amazing strength and courage. Keep your chin up and we'll be keeping you in our prayers.
Lots of hugs and prayers sending your way....love lil' liz and the gunderson gang
Hi Little Ben!
Hey there Little Ben. I know you don't know me, but I wanted to say hi and tell you that you are an awesome little guy. I know things may be scary right now, but there are people all over who are thinking about you and your mom and dad and your brother. My name is Leigh Ann and I live in Los Angeles, California (where all the movie stars live). I went to school with your mom. She's cool. Ok, little pirate, I have to go, but I wanted to say hi to you and let you know that you can come to Los Angeles and hang out with me whenever you'd like (your mom and dad and brother can come too).
-Leigh Ann Philipps
Hey Ben!
I know we only met once, and so you probably don't remember me...but I remember you! I always hear so much about you, how fast you are growing up, how funny you are, and certainly how smart and adorable you've always been! I just wanted to tell you how proud I am about how strong you are being! Your mommy and daddy are superheroes and will take great care of you! You're not going anywhere soon, so make sure you can be in my wedding in another 10 years :) I talked to God, and made a special request for you...I asked him to give you a miracle (and if I was in store for one in my lifetime, I wanted Him to give you mine!) Keep being strong because I know you can!
You're always in my prayers.
Love, Caitlin Sandahl
Hey Ben and Erin!
Greetings from the Fishbowl and Bughouse. Ben, you already know your Mom is a pretty amazing person and all of us at Audubon agree with you so it only stands to reason you must be amazing too. For the record you also seem to make a very believeable pirate so I'm going to keep my eye on you when I'm around you just in case mischief ensues. I don't know if you two are aware but we're practically neighbors on the West Bank so I just wanted you to know that if either of you need ANYTHING all you have to do is give me a call and I'll be there in a jiffy to get it done. Take care of each other and I hope we'll see you both soon.
Cheri
Arrrgggghhh Pirate Ben,
You make such a handsome and brave pirate. I love your pirate hat. I bet you love to watch the Pirates of the Carribean and act like Jack Sparrow. You know what! You are a lucky little man to have such a smart mommy, but I am positive you already know that. I work with your mommy and I was even her teacher for alittle while. That is how I know she is so smart, best in the class. My thoughts and prayers go out to you and your family. Ben, incase you didn't know it yet but Childrens Hospital has the best desserts and great games and movies. Take care of each other, and I am here if needed.
Kim Jayroe
Ben and Erin,
Hey Lil Ben you don't know us but we work with your mommy. We are VERY proud of how strong a little boy you are. Looking at the other blogs I can tell you are surrounded by people who love and care for you, especially your parents. So lets kick this and get back to swashbuckling, it's no fun without you. Erin, if you need anything at all please do not hesitate to call. You are both in our prayers.
Love Marco and Jenny
To Little Ben and all of his family!
Erin, Thanks for finding a way to let us all be involved in your life right now. That Wednesday that changed your life was a day that impacted the lives of all who know you, your parents, and of course your special little boys.
We are thinking of you all and if there is anyting that I can do to help here in Phoenix please let me know.
Little Ben, I remember when you were visiting at your grandma and grandpa's house. You gave me a lesson in the names of all of the tools from your very extensive cool tool kit. Then you even let me read a story with you...I really like reading stories to cute little boys.
Your good old fashion pirate party looks like just the thing to make an exciting day in the hospital. You know pirates can do all kinds of unexpected things and now those pirate friends will be watching over you! Lots of people look forward to having you feeling like getting up and singing a pirate song and doing a pirate dance.
Love to you all from all of us,
Lorrie Yarnall
Hi Sarrat Family,
You are in my thoughts and prayers. All of you are truly amazing and strong. I know that mini-Ben will let the pirate in him take over and will persevere. Please let me know if there is anything that I can do to help.
Sincerely,
Andrea Lewis
Hi Ben & Family,
My name is Leticia Crespin and I work with your Grandfather Patrick. My family and I have you and your family in our thoughts and prayers. I think that you are a strong little boy and you will pull through your illness. I heard you like jokes? My daughter Rainbow is 7 years old and she loves jokes too. She asked me to tell you this one, Why did the chicken cross the road? Because his sister was about to marry a toad! HAHA:) Ok Ben, she has 1 more, What room can no one enter? A mushroom! HAHA! I hope you liked thoses. If she comes up with anymore we will send them to you.
Hi Family,
I just had this email sent to me. I don't know your family, but I do know that God is a miracle worker. On Wed of this week, according to medical science, 2 of my family members should have died. One of them was my mother whose appendix ruptured 3 wks ago. She found out Mon. 11/17 it was inflamed, when they went in to remove it Wed., 11/19, they saw it had ruptured 3 wks prior. She just came home from Touro today, 11/24, surgery went well with no infection or sepsis. I love when doctors are baffled, it grounds them. And the other was my 6 month old cousin, in Baton Rouge, who was brought to the hospital with a 105 degree fever after her pediatrician dismissed her symptoms of pneumonia. Turns out the baby (Kori) not only had pneumonia but a blood virus that was not responding to antibiotics and needed an emergency blood transfusion. Her body rejected the blood and became septic. They told my cousin her baby won't make it through the night. This all happened Wed., Nov 19. She called us in hysterics and we immediately began to pray. Just like you, we called everyone to send up prayers from around the country. Guess what! We received a miracle! The baby not only lived through the night, but the doctor was absolutely amazed when he looked at her chart the next morning and saw the baby's blood work came back clean as a whistle when it was septic the night before. Family, God is no liar! He cannot fail! He formed this world with his words, just like we form our world with our words. Words are powerful! God says to keep him in remembrance of His word. His Word says with long life He will satisfy us. I don't consider 4yrs a long life!! So if his word absolutely cannot lie we need to consistently remind Him of what it says, by His stripes we were healed. I'm going to tell you just like I told my cousin, speak life and health into Ben each day. Get you a list of healing scriptures and stand on God's word. I don't care what the doctor reports say, I know what God report says, whose report will you believe?! I respect their science but when they don't have answers or solutions that's when it's time for God to step in and show up. If you bought a new car and it broke who would you take it back to? The manufacturer, correct. So take Ben back to the manufacturer. Trust in God and watch Him show up, but guard your words in the process. Two houses divided cannot stand. Don't stand for negative talk. Feel free to email me, I will be standing in agreement with you for that baby's miracle! I hope this has encouraged your faith.
Alicia
MAMA MIA THATS A BIG PIZZA
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