Thursday, November 28, 2013

November 27, 2013

We had our 3 month MRI today. As always, Bennett was great. Mommy was home sick with a stomach virus, so Grandma and Daddy took him. :) He fell right asleep and didn't cry at all. The doctors called around 4pm to tell us that the tumor is the exact same as his last MRI. No changes. We were hoping that it may have shrunk, but we will take no growth any day. Mommy is finally feeling better, so she is able to see Bennett again. :) His ANC's are still low, so we had to have Thanksgiving Dinner at home alone, but The Smith Family were awesome…they brought Thanksgiving Dinner to us. Meant the world to us! It is eye opening seeing how generous and giving our friends can be during these difficult times.

On another note, one of Bennett's little friends from TCH, little Liam, passed away this week. He had a malignant Brain tumor and was Bennett's age. I held onto my baby boy so tight when I heard that. Praying hard that his mommy and family find a peace. For those of you who would like to donate to little Liam's family…go to: …picture of Liam below.

Monday, November 18, 2013

November 15, 2013

Chemo 17 today…easy as pie. We arrived at 8:30am and were out of there at 10am. Quickest appointment that we have ever had! Bloodwork and chemo were both a breeze. His ANC's dropped down to 960, so we will try to stay in the next couple of days to get it back up. We also had nurse Dana today, which he just loved! We have his MRI scheduled on the 27th to see how the chemo is working, keeping our fingers crossed!!! -Mommy

Friday, November 8, 2013

November 8, 2013

Chemo 16 today…I can't believe that he has been getting chemo for almost 6 months now…knowing him and seeing him, you wouldn't even know he is sick. Still has hair, energy and full of smiles, which I am grateful for each morning. Bennett's Great Grandpa Dick came down from our ranch in Centerville today to come to chemo with us, which Bennett loved! We arrived at 8:15, met him in the lobby and then walked on up to infusion. It was a slow Friday for them, so we were in and out in 2 hours!  His ANC count has dropped down to 1002, so for the next week we will have to try to stay away from crowds and sick people so that he doesn't get ill. We had no tears, lots of smiles, and Papa was very impressed with how well he handled it all. :) After we were done we ran down to the toy shop and Papa let him pick out a toy…straight way to a little boys heart ;) 

Earlier this week we went by the galleria to take a picture at the Build-a-Bear store to promote Bennett's Bears Donation Drive and Santa was there! So…of COURSE we got a picture! ;) Until next week- Mommy Nester

November 4, 2013

Today was a long day, we had to head down to main campus for his eye appt and EEG. But he handled both like a superhero! Vision came out perfect! Even most adults wouldn't be able to sit still for an EEG, but he did. :) I am SUPER proud to be his mommy. Results from EEG on November 14th, will keep everyone posted!

November 1, 2013

Well, its been almost a month since we posted last, in that time we have a lot going on. Bennett had blood work each Friday and we got to dress up as "Doctor Nester" for Halloween and get yummy goodies from our neighbors. We have had to stay in most of October due to his ANC counts dropping so low. Today was the first chemo that they let us have chemo out at the West Campus TCH, which was a super nice change. That facility is small, uncrowded and intimate, allowing him to get a lot of attention from his nurse. :) Gammy usually escorts us to chemo, but she wasn't feeling well today, so Grandpa came instead. We arrived at 8:30, checked in, got vitals, and by 10am they had started chemo. His ANC numbers had bumped up to 1490, which was a big relief, because if they drop below 1000, they won't allow us to do chemo and bump us back a week. He mostly played in bed all day and was very good despite having to stay in one place hooked up to a machine all day. we also had a visitor today, Cameron, one of Mommy & Daddy's friends stopped by to visit and bring Bennett some toys. Super nice of him! We did have one hiccup today. Bennett started experiencing what the doctors have labeled as "partial complex seizures." They are full body tremors lasting about 3-4 seconds. Today he had around 20 of them. Since he started having these, right after chemo we were taken down to radiology and had a CT Scan to make sure that nothing was seriously wrong or blocked, which thank goodness they weren't. 

Our oncologist stated that if he was still having the seizures the next morning to take him to the hospital, so we did. We spent 12 hours in the ER, visited with countless doctors and neurosurgeons, and finally were given the answer that he has a form of situational epilepsy that is being triggered by his tumor. They really couldn't explain it, only treat it. So they prescribed him a seizure medication. Thankfully it worked, his seizures stopped. So for the next few years, he will continue to take the meds. We are hoping this won't be a life long diagnosis, but only time will tell. We have to venture to the hospital again on Tuesday for an EEG and ophthalmology appt. Until then… -Mommy Nester