Thursday, October 4, 2018

Fall 2018 Update


It’s been a while since I have updated you on Bennett’s Journey. We had an MRI back in April, the next is planned October 19th. The tumor looked stable in the last MRI, so I continue to pray that this next MRI will continue with stability. We have been dealing a lot with his autism diagnosis right now. The children see him as odd, if they only knew what he has gone through, his view on life is bigger than any of us. Every person he touches or meets, he loves. Unconditionally. One girl in his class was bullying him, but his teacher squashed it quickly for us. These children who bully and tease, those are learned traits, not inherent. I can’t protect him forever, but I will try, because that’s what a cancer mom does, any and everything to protect your baby that God entrusted into you to raise, I cannot let him down. I am his voice.

He took math tutoring this summer, and it is really reflecting in his work this year. Did I mention that he passed into 2nd grade?!? I’m so proud. He is in Ms. Rebecca Martinez and Ms. Gorski’s classes this year, both of them are wonderful with him. Gives me a small sense of relief.

We are working on setting up ABA services for him, but our insurance is giving us a VERY hard time. I hope to get this taken care of very soon. I see him every day, so to me he is normal. And then I see other children his age, God he is different, special, but destined for greatness. We are so blessed that we live in the top medical facility center in the USA.

Over the summer he began a bowling league and is still on it, he loves it. Purple Ball, Purple Bowling Shirt, Purple Ball Bag. Absolutely everything in his favorite color, PURPLE. We have played with friends, made new ones, Got to go to Family Camp for Periwinkle again, and we just got confirmation that his Make-A-Wish Trip has been granted. November 14-travel, November 15- Hot Wheels Factory where he gets to design his own car they will sell in stores, November 16- Disney Cars Land, and then back home November 17. We are all so excited for him.

That’s all for now, next update after the MRI on the 19th.

-Bennett’s Supermom





Friday, October 27, 2017

October 20, 2017 MRI

Today we ventured up to Texas Children's Hospital for another maintenance MRI, this lets us know what his brain tumor is doing. Bennett was so anxious and worried that he was going on the "space ship-aka-MRI machine" that he actually threw-up. Mommy was a worried mess as well with scanxiety, but I kept the happy face on because I know that Bennett feeds off of our positivity. Each time he has an MRI now they have to give him some form of Xanax to calm him down. It only helps a little. As a toddler when he began this journey he was never afraid, scared...only a smile on his face. No tears. The location of his tumor was pressing on a gland that suppressed feelings. As the tumor has shrunk and he's gotten older, he's now very cognitively aware of what he is really going through, and that scares him. I know I had hoped that he would have that veil and rose colored glasses for as long as he could, but it seems that door has shut and new one has opened. As we move ahead all we can do is stay positive, live in the moment and thank God that his tumor is not growing, it has stabilized. I know we wish it would have continued to shrink, but for now, stable is good. I'll take that any day over a growing mass in his tiny little brain.

This journey has taught me so much about love, understanding, kindness, paying it forward and having hope. My son is my hero. His most recent results from today's MRI is that it is stable. Thank God for that. We will continue to monitor it, his next MRI is in April 2018. We watch, we wait. We remain vigilant for any signs that the tumor is trying for round 2. But for now it looks like we may have just killed that "little" giant. Until next time...

Bennett's Super Mommy



Monday, April 17, 2017

April 14, 2017 MRI


Today Bennett and I ventured down to the main campus for his maintenance MRI. It gives us a look at what the tumor is currently doing. Bennett had a severe panic attack prior to going under...I think it all has gotten so real for him, that he knows its not normal anymore for a child to go to the hospital, and it scares him. They gave him a fast acting anxiety rx to help calm him down, but he still faught going under the anesthesia. After the MRI we took the wheelchair over to the CCC 14th Floor Cancer Center and got to talk with his oncologist with the results and where we are headed for the next year or so. The results were that the tumor was stable. :) Wonderful news! So if he continues on like this for the next 5 years, we can finally move him to the Cancer Survivor Clinic. I cannot wait for that day. I'm emotionally drained from this cancer.







Monday, March 20, 2017

Bennett's First Spring Break

We want to give Bennett every opportunity to have amazing memories, especially after all he has been through. So for his first spring break we chose to take him on a Cruise to Cozumel, he loved it! He was able to swim and play, stuff him self with treats and finally live like a normal kid. It's something we will cherish forever. Here are a few shots from our trip... 



 


 
 

 

Sunday, March 12, 2017

Bennett Turns 7

Just wanted to give everyone an update on where Bennett is right now. We had an MRI back in December, the tumor isn't growing, but isn't shrinking anymore either. so it remains stable at this time, which we re so grateful for. Another MRI will be in April to followup, so I will post those results then. It's been a crazy few months, but he is doing wonderfully well and growing like a weed. I just wanted to post some pictures of his 7th Birthday Party we had recently. Lots of Love, Mommy Nester




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!!!!