Tuesday, August 9, 2016

August 9, 2016

Well... Today we had our scheduled maintenance MRI to see if the tumor is still shrinking. It's been a tenant in Bennett's brain for so long now we might as well give it a name. Any suggestions? Hah. We arrived at TCH bright and early at 7am, and Bennett was high anxiety again today just like his last MRI in April. I think the full impact of his illness is slowly becoming more understandable as time goes on. I hate to even call it lucky, but we have been lucky the past 4 years that he has been so blind to all of this. It's almost like a switch has been flipped. He repeated over and over that he did not want to go see the spaceship today. If I could take it all away and blow up the space ship I would. I'm so over this cancer. In ready for my little boy to be a little boy. He went under with a fight, and woke up grumpy. We've been cuddled in big bed all day letting anesthesia leave his system. I'm on Momcology Scanxiety pins and needles right now...typically his oncologist calls by  4pm to give us the ok that his results are ok. But it's 7pm, still no call. I can't replace my breath until I get that verbal confirmation that his team at is still slowly moving out. This waiting game sucks. Randy and I have begun to grab a disc of the images each time he has an MRI now so that we can see for ourselves how it looks before we meet with his oncologist...this scan has me a tad concerned... It's probably nothing and I'm over analyzing, as I normally do, since his tumor has never followed the normal route. It just looks more pronounced than the last scan to me. Praying that's not the case. So for now, we wait... Tick tock. 

The results came back... Stable! :) I'll take it! Woohoo!!!! 

Friday, June 10, 2016

CVC Bloodwork 06.10.2016

Today Bennett and Mommy ventured over to TCH for a routine checkup, making sure any underlying issues are not popping up, it was quick and easy! He was sooooo excited to "see the girls!!!!" Hahahahh! We are so blessed that he has handled this entire journey with a smile, no fear of the unknown. He's taught us so much. Next appt is in August for his MRI... Update you all then! -Supermom

Monday, May 30, 2016

March 31, 2016 MRI

Today Mommy, Daddy and Bennett all ventured over to Tch West Campus for Bennett's Routine MRI to check on the progress of the tumor. Little man was all smiles and hugs, as usual. The results came back that the tumor is stable! Thank you Lord! :) So now, its just a waiting game until his next one in August. everyone have a great summer, I know we will!

Monday, March 14, 2016

48 Hour EEG

Well we checked in at 11am today and after getting Hooked up to the monitors, we began our Extended EEG at 1pm. It's just Mommy and Bennett up here for now, but we got a visit from Aunt Lizzie at lunch :) Daddy will watch him tomorrow and then Mommy will come back after work to relieve him for tomorrow night into Wednesday. Hoping this will give us some insight into those small seizures he's been having. Will give a brief update tomorrow.... -Mommy Nester

So far no seizures to report... He's handled it all so well. :) 
Final Results are in, they couldn't detect any sizable seizures while he was in patient, so for now, we wait and monitor.

Tuesday, March 1, 2016

First Day of Kindergarten

Well, we have finally made the transition. Little man has left his sheltered existence at Smaller Scholars Montessori and moved over to where the big kids play... Peggy Wilson Elementary. Lets just say that Mommy & Daddy were right there with Bennett, high with anticipation and nervous beyond belief. There were tears, on both sides, but I know that this too shall pass. He has survived so much, Kindergarten will be a breeze. A big thank you to his teachers at Smaller Scholars, without their love and support we couldn't have maintained Bennett's academic advancement the way we have through it all. They truly are amazing educators. Moving forward, one step at a time.

Goodbye Pre-K Montessori:

Hello Kindergarten:

Tuesday, February 23, 2016

Update on Little Man

Wanted to give everyone a quick update on Bennett…we spoke with his nuerologist and she agrees that additional monitoring of his petit mal seizures is in order, so we will be having a 48 our EEG at TCH March 14th-17th….that will be all kinds of fun… :/ his will be hooked up to electrodes the whole time and I will have to sit there with him and press a button everytime he has a seizure. Nice way to spend our Spring Break… L But at least we may get some answers now.

Bennett starts Kindergarten at Peggy Wilson Elementary next Monday…I’m super nervous but excited as well!!! Our next MRI is set for the 31st…I hate having scan anxiety. Big changes for us. Let’s do this! Tata for now… -Mommy Nester

Thursday, February 18, 2016

February 18, 2016

So we’ve had a pretty busy 2 weeks, so here is a quick update for everyone.

We have made the decision, and Bennett will be transitioning over to the CyFair Public School District starting February 29th. He has gone through evaluations there with their Special Education Program Leaders and we will get the status on his approval for that blanket on March 22nd. He is going to be joining Ms. Manton’s Kindergarten Class. Let me just being by saying Mommy is FREAKING out. This is a HUGE change for all of us. Yes, he will be getting all of the support educationally and cognitively that he needs to help with his medical conditions and autism, but he will be moving into new territory. No more naps if he is tired (right now he gets them b/c of how hard the radiation was on his body even now), no potty help, no lunch help, its all big boy stuff…I’m scared he isn’t ready…I’m scared I’M not ready for this…but…here we go regardless. Jumping feet first, eyes closed. Wish us luck.

Bennett had to go to the hospital 2 weeks ago for a virus…he’s feeling much better…we had his allergy evaluation earlier this week, and I mentioned this to her. I also mentioned that he has been having many more of the petit mal seizures (also called absence seizures). He experienced 5 alone in a 2 hour time frame. His allergist wonders if these seizures are triggering something in his brain that regulates his body temperature, and that in turn activates his body’s immune system to kick in and fight, triggering a rash. This literally was one of the most insightful hypothesis’ I’ve heard out of TCH in a while. Well done Dr. Anvari. It could be, so we are watching and will report back on that soon.

I’m sure I’ll be posting next week his “First Day of Kindergarten” pics…so stay tuned. Hugs- Mommy Nester

Starting out in 2016

It's been a while since I posted on here, so I wanted to give everyone an update on how little man is doing. I've been so inundated with work and Bennett's Bears the past few months that my blogging has had to ride on the back of our bus....but I finally have a moment to update everyone.

His past MRI in December revealed that his tumor has shrunk by almost 45% since September, which means that the proton radiation really did the trick and is killing that tumor. We could not be more happy. He is enjoying spending time with friends, being in school and learning to be a normal little kid for once. I know that he will never officially be normal, but for us, this seems normal, so we take what we can get. Bennett met with his neuropsychologist in December and after a lengthy 2 day analysis they have diagnosed him with a mild case of Autism Spectrum Disorder. They recommend that we pull him from his Montessori school (where they focus on independent study) and move him into a public school setting where he can interact with other children and work on his social issues and be able to benefit the resources that the public special education forum has to offer.

To be honest I am terrified for him. I don't want him having a label of being "special ed" at such a young age and have it follow him throughout his educational journey, but I suppose I can't be picky. At least we found out now and are taking action. I will update you all as we get more information on it and where they plan to place him.

Until then he is a happy little boy, he had a wonderful Christmas, Santa brought him lots of goodies, he rode the Polar Express with Papa Dick and Mimi and even got to help Mommy deliver a few bears this season to the sick children at the hospital.

As a family we have had a rough few weeks, but we are moving into 2016 with a new vision. Less drama and the people that come with it, time for us, and have joined Second Baptist Church and are going every Sunday now. We needed a change.

Lots of Love- Brande, Randy & Bennett