Wednesday, September 23, 2015

Post MRI Oncology Appt (September 22, 2015)

Today Gammy took little man up to TCH main to meet with his oncologist Dr. Rednam to discuss our next steps. Here is a picture of his tumor so has reduced by a millimeter in all directions! SOOOOOO excited about that. It's weird...who would have thought that I would have been excited about a tumor decrease 5 years ago... our lives have completely changed.
We will have another MRI in Decemeber and then one in March. If we continue to see shrinkage or stabalization we will then move to every 4 months and then to every 6 months over the course of the next 3 years. After that its 1x a year for the remainder of his life. Small price to pay for the comfort of being "cancer" free...well at least as much as he can be. A child with a brain tumor that is still there can never really be in remission...but we like to think he is technically there. ;)

I will update you all as we move forward. About to get SUPER busy with Bennett's Bears for the holiday season...lots of love- Mommy Nester

Saturday, September 19, 2015


Thought I would share a few pics of him recently... he's just LOVING being a normal kid right now!

Friday, September 18, 2015

September 18, 2015

Today mommy and Daddy brought little man up here for his 2 month check up MRI... They are doing his brain and spine, so it will be a 3 hour procedure... He just went back so I will post more later once he's out... He handled going under well! They want to review his spine to make sure that no tumors are growing on it... Just a preventative measure... 
Well, he is out of his MRI and back home... Made for a VERY long day... He is still woozy but is curled in bed watching Cinderella... Will let you all know once we get results. -mommy nester

Results are in... TUMOR IS STILL SHRINKING! :) Thank you Jesus! So thrilled that the radiation is working. I don't think we could take much more. And there are no tumors on his spine! Wonderful news for us today!

Tuesday, August 11, 2015

July 23rd, 2015

Well, today is the day that we have been praying for. For 4 years we have battled brain cancer, and it seems that Bennett has won this battle. The tumor is still there, but it continues to shrink, meaning he will  need no further treatments. he will have his port removed and his eyes will have surgery so that they can work together again. Bennett will get to be a normal KID. He told me "Mommy, I get to have my superhero button removed!" I love hearing him say that. We will continue with MRI's for the next year every 3 months... next one scheduled for September 18th...but if it continues to shrink, we are in the clear. We did it. We beat cancer. :) The surgery today was pretty easy...his eyes are sore and red, he has to stay in bed the next week or so recooperating, but after they heal we can get back to normal...whatever normal may be. I don't remember what it is to be honest...but I think we will manage. Thank you to everyone who has stayed with us and prayed for us on this long journey. I hope this will be our last medical update...only time will tell though... here are a few pics from his surgery. ;) Love- Supermom

Tuesday, June 16, 2015

June 16, 2015

Today we ventured over to TCH Katy for his 4 month post radiation MRI. Tropical Storm Bill is making landfall this morning and the rain bands have already begun to hit us. Hoping we can make it home before it gets much worse. Last thing we need is to be stuck at the hospital in the storm. He is not feeling too well this morning, stuffy and runny nose, but other than that he has handled his port access and going under anesthesia like a champ. The oncologist should call us later this afternoon with the results, so I will keep everyone posted. Praying for stable results.... Maybe all of this rain is a good sign, cleansing our family of cancer. For now I sit and wait in this room filled with little kids who have to get MRIs...

Well MRI went well! Little man woke up grumpy, but that's expected from the anesthesia. We expect to get the results later today or when we meet with his oncologist Friday :) 
Results are in...the tumor is SHRINKING!!!!!!!!!!!!!!! Praise the Lord!

So we will now schedule him to remove his port (meaning that the doctors don't think that he will need any further treatments); and they will fix his eyes so that they are conjugate again. I cannot tell you all how happy we are. I will keep you all posted what the next step will be.

Friday, April 10, 2015

April 10, 2015

Today we went in for a port flush and monthly bloodworm, so I thought it would be a good time to update you on Bennett. He is back at Montessori School (Smaller Scholars) and doing great. His teachers there are so wonderful and understanding of everything that he has been through. We couldn't have been luckier picking such a great school. His therapies have been going well, but he still needs PT-OT-ST weekly, so he will continue to receive them through the end of August. His hair is still gone, so for now he is rocking the mohawk...which he does smashingly...I have to fight the little girls off at the door of his classroom at school. ;) Ladies Man. We have out next MRI scheduled for June 16th...fingers crossed that the tumor is stable so we can have his port removed and move towards becoming normal again. 

As far as fun activities, we have had quite a few...We got to go for a ride in the Met Life Blimp courtesy of the Sunshine Kids, We met the Zach Brown Band at the HLSR; and even got the Hunt Easter Eggs at School! Been super busy having fun.

On a side note Mommy lost her she has spent the past month job hunting...just when one thing in my life gets better, another falls apart....I really need to be cut a break Jesus...if you are listening...

Will update you all once we have our MRI in June. 

-Mommy Nester

Tuesday, March 17, 2015

Post Radiation MRI (March 17, 2015)

Well today was the big day...his MRI to see if those 6 weeks of proton radiation at MD Anderson actually worked. We got up at 5am and headed to the TCH medical center for his 7am check-in. WAY too early for Mommy & Daddy...but he certainly was bright eyed and bushy tailed. hah! :) After vitals he had his port accessed and took him back to the scanning room. Looks like the luck of the Irish were with us today!!!!!!!! the tumor is STABLE. The radiation seems to have worked! We met with Dr. Rednam at 11am this morning to go over the results. He said that the tumor has not shown any growth since the last dose of radiation last month. They will continue to monitor it with MRI's every 3 months, but if it remains stable then we don't have to worry about any further treatment. We are SO relieved. Thank you all for your thoughts and prayers through the past few months. If the next MRI is stable in June as well, then we will schedule him to have his port surgically removed from his chest; and his eye surgery to correct his eyes will take place in August. Baby steps to normalcy. THANK YOU JESUS. One happy Mommy over here. :) 

Bennett's 5th Birthday

It seems so weird to be celebrating his Birthday with everything that has gone on the past few months...All of his doctors appts; therapies; losing his Nana; and radiation...but its nice to have something to celebrate. We didn't take him to do anything big since we just go track from Disney World. So, we had dinner at his favorite restaurant with our family...CHUYS! :) Happy 5th Birthday Superman! We love you BIG BIG BIG! 

Sunday, February 22, 2015

Bennett's Post Radiation Disney Trip

Saturday (2.21.15):
We had a successful travel day! His frost plane ride was ok, no tears, he just insisted on holding Mommy's hand the whole time. The entire plane applauded him for beating a Cancer superhero, and the flight attendants have him a bag of goodies! :) I don't know who is more excited about this trip, him or us. Lol! The hotel is BEAUTIFUL. Our balcony overlooks the giraffes and zebras! :) will post pics from each day as we go! Hugs! -mommy nester

Sunday (2.22.15):
Today we began our adventure! Started at Magic Kingdom. We were picked up by our VIP Tour Guide Alexa at 9am and made our way on over. She is awesome and we are so blessed to have her help! Huge thank you to Danielle and Doss for that! :) he has ridden very ride and loved meeting all of the princesses! We are back at the hotel now for a 2 hour rest before we have to be back for dinner and the parade! :) will update more later. 
Back again! Had a meet and greet character dining with Winnie the Pooh and Friends! :) soooo fun! 

Monday (2.23.15):
Today our guide picked us up bright and early at 8am and brought us over to Hollywood Studios! He got to meet Buzz & Woody; Mike Wizowski & Sully from Monsters, Inc.; and Lightening McQueen with Tow-Mater!  We even got in a Frozen Sing Along, daddy just LOVED that! Lol! Super Fun! Back at the suite now to rest before we head back there at 4 for more rides and the Fantasmic Show! Hugs- Mommy Nester

Tuesday (2.24.15):
Today we ventured over to the Animal Kingdom! We had character dining breakfast at Tusker House and got to meet Donald; Daisy; Goofy and Mickey!!! We went on a safari to see all of the animals and even got to see his favorite... Giraffes!!! Afterwards we went back over to Magic Kingdom to see his ladies one more time... Such a busy day! ;) 

Wednesday (2.25.15):
We were picked up at 8:30 this morning and went over to Downtown Disney for our hot air balloon ride before we went to Epcot! It was super fun! Bennett had a fun day riding the rides, meeting Alice from Alice in Wonderland and Minnie Mouse! ;) he crashed before the fireworks show at 9! Busy day! :) 

Thursday (2.26.15):
Today is our last day at Disney.... I'm both sad and relieved all at the same's been an exhausting week, both physically and emotionally. We are so blessed that so many people contributed to make this trip for Bennett one to remember. For the first time in 3 years we were able to see him be a normal child, and it was magical. :) he had an amazing last day visiting Magic Kingdom and hitting up all of his favorite rides. We even saw the princesses a couple of times more ;) the trip was amazing and one we will never forget! Off to bed now, we have to catch an early flight back to Houston. Hugs!