Wednesday, December 31, 2014

8181 Fannin

Today we picked up the keys to our furnished apartment in the medical center, 1 mile from MDA and TCH. The Gopinath Family; Golan Family; Sarah & Jan all chipped in together to make this happen for us so that we wouldn't have to drive an hour both ways each day for 6 weeks. Their amazing generosity and kindness to our family is something we could never thank them enough for. Those precious 2 hours a day we have to spend with him will now be spent resting with him and cuddling instead of battling Houston traffic. From the bottom of our hearts, thank you! 

December 31, 2014


Today we arrived at MDA Proton Therapy Center bright and early at 7:30am. After meeting with the doctors to discuss the pros and cons and what we could expect from all of this, Bennett had his port accessed and was put to sleep to have his simulation mask made for the next 6 weeks of radiation. This will be a mesh mask that is fitted to his face, the lines and symmetry match up with the machine so that every session is an exact match. We are in the waiting room currently, waiting for him to be brought to recovery. He is so strong, he told me he didn't want to go lay down in the spaceship, but he put on his brave face and did it anyways. I'll update you all once he comes out to recovery. 

Out of recovery, all went well! :) We begin his sessions next Wednesday. 

Wednesday, December 24, 2014

December 24, 2014

We went to TCH today to get his port flushed...as always, no tears! 
Here is an update on where we are... Therapy sessions are going great! He will continue to have them once we start radiation in January. We will move the appointments to the afternoon since he has his radiation treatments in the mornings. Little man is going to have a tiring 6 weeks. 

We finally heard from MD Anderson... He has his initial meetings with them next Tuesday-Wednesday, with plans to begin radiation that next week. In the mean time, he's had a pretty busy month... Delivering Bennett's Bears to sick children, playing with his friends, and spending time with Mommy, he even got a visit from Santa! :) Once we get a definitive date to start radiation I'll let you all know. Hugs-Mommy Nester


December 11, 2014

Today we traveled down to main campus for an appt. With Bennett's seizure doctor. She wanted to talk with us about how Bennett is constantly tired... His tumor is located in the mid-brain, which regulates your body's sleep. She thinks that may be the reason why he is constantly tired...the tumor is aggravating that area. We are scheduled to have a sleep apnea test in January 2015 just to be certain. We will also continue to monitor him and if any small seizures occur, we will up his oxacarbazapine dose. After our appt he got a special treat! Linkedwithliam.org was at the hospital giving out gifts and his two favorite Disney Princesses were there, so we of course had to get a photo! 

After our appt we ran to the dentist for a quick checkup before radiation starts. Chemo and radiation can ruin his teeth, so we have to be vigilant in their care. We just love his dentists office, they rock! 

Once home we were surprised by a giraffe care package all the way from South Africa...so amazing that his story touched those all over the world. :) so thankful for this awesome gift! 

Sunday, December 7, 2014

December 6, 2014

Well... We had to venture to TCH Main campus this morning to have a spinal MRI to check for new tumors in his spine. Praying it comes back negative! We had a few friends come with us for support :) will let you all know once we get the results.