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