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 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! 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 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.

Sunday, November 30, 2014

November 30, 2014

Tomorrow we go in for Bennett's First MRI post surgery. I will admit that I am a bit nervous and afraid. We have gone through so very much the past 2 years... chemo, numerous appts, therapy, and surgery. So I am just a tad concerned for what this test will bring into our lives. The surgery we had in September was above and beyond anything we could have ever hoped for, removing 95% of the tumor in the middle of his brain. But, despite all of the wonderful progresses that we have made, the tumor each time did the opposite of what the doctors believed that it would do. So, my caution comes from a foundation of disappointment. 

I do know that whatever the course and results may be, we are ready to tackle it all with a smile. Bennett has been so very brave for us. He is the reason I can get up every other morning and drive to the hospital with a light heart knowing that he is excited to be going and not the least bit afraid. He just loves the hospital...that is SO weird to say, but true. He's the only child I know of who ASKS to go to the hospital. Its sad...what child should HAVE to like going to the hospital? Whatever the results are we are poised and determined. 

If the results show that the remainder of the tumor is stable, then we will schedule to have his portacath removed and will continue with therapy through Mid-March, beginning back to school early January. If the results show any growth, we will begin a 5 week proton therapy radiation course at MD Anderson. Our immediate future is pivoting on tomorrow. Will update you all as we get to the hospital tomorrow and then Tuesday when we get the results back from our nuerosurgeon and oncologist. Fingers and Toes Crossed! ;) -Mommy Nester

Well...the results were not what we wanted. The remainder of the tumor has doubled in size since the resection surgery. My heart literally dropped when I heard that. 

So...the tumor board reviewed his case yesterday, and they are all in agreement...they will begin radiation this month. Here is what it entails:

* 6 weeks; 5 days a week
* sedation due to age; so he will have to be put under each day, meaning he can't eat anything 12 hours prior to sedation. So...hopefully they get him in early each morning.
* his port will be accessed 5 days a week; de-accessing on weekends
* it will be quite wearing on his body, so we will be staying in a lot to rest

We have had an amazing group of friends and family who have stepped up to the plate to help us, and for that we will be eternally grateful. Sarah & Jan; Gopinaths & Golans...thank you for helping us with the apt. ;) SOOO generous.

They are helping put us into a furnished apartment so that we can be close tot he medical center and not have to commute each morning for the 6 weeks we will be receiving radiation. 

We will continue to update you as we move forward. we have an MRI scheduled for this Saturday at 11:45am to see if for some reason his tumor has not spread to another portion of his body; mainly his spine.

Thank you all for your continued prayers. We are heading out the door now to TCH to have his nueropsych evaluation post surgery. 

Much Love- Mommy Nester

Tuesday, November 18, 2014

November 18, 2014

Today we had to travel over to TCH West Campus to the audiology department to have Bennett's hearing tested. One of the side effects of the 14 Months of Chemotherapy is hearing loss. The test took about an hour, test showed that his left ear was a little worse than his right. We will test again in 3 months, the doctor indicated that the hearing loss can continue even after chemo has stopped, so we have to keep watching it. But for now, he's ok! :)

Sunday, November 16, 2014

November 16, 2014

Its been a busy week of doctor's appts as usual. I seriously feel like we live there at times. Its sad that when I get in the car with him every morning he is excited to go to "Number 11"...guess it could be worse though. His therapy sessions are doing great. His physical therapist has seen wonderful improvements with his abilities to walk and move with his visual limitations caused by the surgery (eye disconjugation). His depth perceptions have been off, but the new glasses combined with therapy are helping. We are still wearing his eye patch everyday (which he hates) but hoping with time that will stop. Its aggravating to see how other children react to see him having to wear it. ST & OT are doing great as well. :) So glad for that. I know we are ready to be able to get him back in the classroom. All of that will hinge on the MRI December 1st. Everyone keep you fingers crossed!

On a side note, his Nana Weaver has deteriorated health recently. Breaks my heart to see her like that. She was the first person to hold me when I was born, and was supposed to be the first person to hold Bennett, but his complicated birth didm;t allow for it. Everyday we went to visit her after his appts she repeatedly asked for him, but they wouldn't allow him in due to infection. So after 5 days he was FINALLY able to come see her. We wrapped him up and he was able to stop in for 5 minutes to see her. :) It made her day! 

We also Decorated for Christmas this week, Bennett helped decorate the tree! :) And went to see Disney on Ice Saturday (tickets donated by the McMickle Family). :) Super fun! Until next week...-Mommy Nester

Monday, November 3, 2014

November 3, 2014

We don' really have much to report as of yet....we are continually at the hospital each week for his rehabilitation sessions and checkups to make sure he is doing better since the surgery. I keep forgetting that even though he is an active 4 year old, he did JUST have major brain surgery, so his little body is fighting each day to keep up with the tasks that are so easy to any other child. Today for instance, we were at TCH all morning, when we got home to nap at 1:30 he crashed...and it is now 5:30pm... 4 hour nap. Guess he needed it. We just had Halloween on Friday, so I wanted to share his adorable costume with you all! Until next week... -Mommy Nester

Friday, October 24, 2014

October 24, 2014

It's been a busy week...rehabilitation appts; oncology appts; nuero appts; but he is handling it well. His therapy sessions are going great and he is making a lot of progress! They hope that he can be done with rehab in 6 months or so. We went into see Dr. Rednam this week and accessed his port to flush it out...looking forward to the day we can remove it permanently...its scary that my child gets excited to do the "1-2-3" as he calls it. He makes me look like a big weanie every time they poke him.

We had to make an ER visit to TCH this week as well; he spiked a 101.3 fever so they hooked him up and got his fever down before sending us home. 
Despite all of our appts and such, we got to have a little fun as well...we went to the Houston Dynamo game and were given cleats from Giles Barnes (Soccer Player)! It was so touching to see a big player reach out to him. :) So honored to have so many people who care about him. His battle still isn't over...I know that we will have to worry about the tumor growing again since they were unable to get all of it...its a scary feeling. 
And one last fun fact....Bennett was finally able to go visit the Rice Tennis Team today and see his locker in their new facility! They stocked it full of toys for him and then brought him down to the courts to play for a was the first "outing" he has had to really play outside, so it was nice...but he got fatigued quickly, so we had to take a few breaks to let his body catch up. Even a month after his brain surgery his body is still recovering. As we were leaving the courts today he turned around to the guys and said: "By Tennis Guys....I love you!" Made my heart MELT. He is such a loving little boy. Until next week....-Mommy Nester

Monday, October 13, 2014

October 13, 2014

It's been almost a month since our last we wanted to update everyone. Things are progressing well. He is adapting to his rehabilitation and moving ahead with each session. We are at rehab each week for hours each day, so the days seem long, drives suck, and the time spent there is wearing...but it is all for our little superhero, so it is all worth it.

We also met with Dr. Dauser and Dr. Edmonds; reports from both...

Dr Dauser: Incision looks good, healing nicely; if all progresses as planned, and tumor is NOT growing in December at time of MRI, then we will have Bennett go back to school and continue on a monitoring basis.  If tumor IS growing: begin 5 week radiation course.

Dr. Edmonds: Eyes look better since surgery, eye patch has helped disconjugation; his depth perception is off due to the surgery. If vision is not repaired soon they will do surgery in 6 months to repair his vision. According to his doctor- he has the vision of an 80 year old woman right now.....

Despite our extended hospital stays and appointments...he is doing well....therapy is going well. Blessed. we have had time to visit family and play with friends...

I promise to update more often....have been so overwhelmed with everything. It's hard to make time. But I will. - Mommy Nester

Tuesday, September 23, 2014

First Week Back Home (Post-Surgery)

I cannot begin to explain how happy we are to be back home with little man. We have slept better and longer in the past few nights than I could have hoped for. We are still hands on for him with restrictions on what he can do, but he is very happy to be home. Our neighbors were wonderful while we were out and did our lawn for us, which was a nice surprise to come home to...just love where we live. We began our Out-Patient Rehab this week, starting with his patient evaluation and sessions to map out his future therapy and where we need to go with it in the next 3 months. It will require lots of visits to TCH in the Medical Center; long days; long drives; but at least we get to sleep at home right? We did get to go visit Miles at the Zoo; so Bennett loved that! They set up a private feeding for him.

Feeding Miles at the Zoo between Therapy Sessions

Our new Physical Therapist

Ms. Sheila, Ms. Meri and Ms. Lori from his school came by to see him!

The pitcher from the Rice Baseball Team sent him a gift!

Made cupcakes with Mommy

Watching Finding Nemo with Maya & Mason

Mommy & Bennett made a treat

Miles the Giraffe painted him a get well soon card!

Ms. Sheryl came by to play games

Another treat with Mommy!
Our new Occupational Therapist