Monday, January 26, 2015

Fourth Week of Proton Radiation Therapy

Monday (1.26.15)
Today was a special treat for little man, when we arrived at MDA the Rice Tennis Team was waiting! They came to be here with him for his treatment today. :) we just love those guys!!! They were able to go back with us to see him get accessed and put under. He had a little trouble going under anesthesia, but once he was finally knocked out he was fine. After we leave here we will head back to our apartment to rest before we have to be back at TCH this afternoon for more appointments. 

Tuesday (1.27.15)
Gammy met Bennett and I at MDA this morning for our 14th radiation treatment... Halfway done! :) little man had a hard time falling asleep with the anesthesia, he kept fighting it, but once he was finally out, he was snoring away! We have our weekly see appointments with Dr. McGovern and Dr. Rednam today from 1-4...will update later with those meetings. We were able to finally get a picture of him with his mask on... 

Wednesday (1.28.15):
Today Mommy & Bennett were solo for their day 15 of radiation. We didn't have to be there Til 8:30, so we were able to sleep in, which was a treat. We brought a few Bennett's Bears with us to give to 2 of our friends we have met that are getting treatment here...They were running simulation on new patients this morning so it pushed us a little behind. He finally was taken back to be put under at 9:30. He fought the anesthesia like usual...which means he will more than likely wake up super grumpy... We have to be at TCH for therapy from 1-3 later today... I really feel as though we live at te hospital. :/ -Mommy Nester

Thursday (1.29.15):
Mommy and Bennett were solo again today...and it's been an eventful morning... Bennett has been constipated from the radiation so his doctor prescribed miralax and generlac to help him hvave a bowel movement... And it worked... All over his pants... In the radiation play room...awesome. Lol. Other than that it's been pretty uniform like all other days. Going under anesthesia he is beginning to become more and more combative. He knocked me in the side of the head today. :( I'm sure he will be grumpy when he wakes up. :/ 

Friday (1.30.15):
It's Friday! Wahoo! Mommy and Daddy took Bennett to radiation at 7am this morning and got a special visit from Papa Dick! :) everything rolled out as it usually does, he fought his anesthesia and woke up in recovery VERY grumpy. :/ hopefully he gets out of that mood, but under the circumstances I can't blame him. So excited that we have 11 days left of treatment! :) 

Thursday, January 22, 2015

Third Week of Proton Radiation Therapy

Monday (1.19.15):
Due to MLK Day, we had a day off from radiation:) So we took a trip to the zoo to visit our favorite Giraffe Miles. We still had appts at TCH for his rehab, but it was nice to have half a day of fun for once! 

Tuesday (1.20.15):
Today we had a full day of appts. Met Gammy in the lobby of MDA and then went on down to take vitals and access his port. So far so good, no tears. He still fights the anesthesia, and wakes up super grumpy, but we have been so lucky that there are no other serious complications. We had our "weekly see" today with Dr. McGovern & Dr. Rednam to discuss how he's handling the radiation so far... Redness of the scalp, fatigue, slight nausea, and thinning of hair. I asked Dr. rednam what the next step would be if this God help us doesn't work... He stated that another round of radiation is possible. Praying it won't come to that... I'm so ready for him to experience being a child for once... Not a statistic.

Wednesday (1.21.15):
Today Bennett's Great Grandpa Dick came to be with him for the radiation session, he said he will come every week until we are done. :) his session went smoothly, but he was super tired after we finished, so I bumped his therapy rehab sessions to tomorrrow so he could have a full day of rest. He laid in bed and watched Monsters, Inc. all day! Lol! Sweet boy! ;) 

Thursday (1.22.15):
Today Mommy & Bennett are flying solo. We got to MDA at 7am, checked in, had vitals taken with his favorite nurse Leo, and then went to the playroom to wait to be called back for radiation. Not certain if they didn't give him enough anesthesia initially or if his little body is building up a tolerance to it, but his little legs were still flailing when I handed him off to the nurses... :( he woke up surprisingly up beat this morning though... So that's a plus I guess. After we rushed over to TCH for our Occupational & Speech Therapy Appointments. It's going to be a very rainy day.... So a relaxing day resting at the apartment is JUST what he needs! ;)

Friday (1.23.15):
We got to MDA super early today for our 12th session of radiation. We had a full house, Daddy; Gammy & Grandpa all came! :) As usual, he was perfect through it all. After he woke up we drove home for the weekend! He napped for 5 hours today...I really can see how his body is getting worn down from this. :/ Poor little guy. We have zero plans this weekend! Only to let him rest and relax! Back again Monday for more...

Wednesday, January 14, 2015

Second Week of Proton Radiation Therapy

Monday (1.12.15):
Back today to begin our second week of radiation. This is his 4th dose so far, and he handled it like he always does, like a champ. Port access was easy, and he fell asleep in my arms. They were running a bit behind today because one of the proton beams was not working, but we are only an hour behind schedule, so it's not too bad. We have appts this afternoon at TCH, today will be a long day... :/

Tuesday (1.13.14):
We arrived at MDA Proton Center this morning bright and early, Gammy met us... ;) As usual he handled it all like a tears, just apprehension as the propofol enters his body to be put under, but that's all. After we were done we came home to rest before having to go to TCH at 1. The only side effect we have noticed thus far has been slight nausea & his head turning red in the spots where the beams enter his brain...and being tired. We met his oncologist today to have his "weekly see" as they call it to just touch base and review how the radiation is effecting his body. All in All...a long but good day. -Mommy Nester

Wednesday (1.14.14):
Today Papa Dick came to radiation with us! :) Bennett was so excited to see him! He will be coming once a week to the appointments with us so that he can spend time with Bennett...means so much to us that he is able to do that. Going under today was problems. We have to be back at TCH today at 1 for OT & ST... -Mommy Nester

Thursday (1.15.15):
Today Mommy & Little man were solo for treatment. We took advantage of it just being the 2 of us and slept in til 6:50! We jumped out of bed and made it to MDA at 7, we love being so close! After vitals and playing in he playroom we were taken back. He did great! It's sad to think that he has gotten used to the anesthesia, but I think he has. 

Friday (1.15.15): 
Today Mommy & daddy took little man to  radiation. This was the first time that Daddy held him while being put under, and he was great! He woke up grumpy from the radiation.... I think his little body hates it! Lol! Rightfully so. After we went to visit his nana and papa boots :) we get to go home today, and we get a 3 day weekend! So we don't have radiation again til next Tuesday... Woohoo! Until next week...-mommy nester


Saturday, January 10, 2015

First Week of Proton Therapy Radiation at MD Anderson

What a week...I cannot begin to describe our exhaustion. Its literally been draining on us, but for every bad thing there are good, right? Hoping we find the good SOON. lol. So... Here is a wrap up of our week....

Monday (01.07.15):

Bennett, Mommy and Daddy arrived at TCH at 8:30am to check in, have vitals, and then await our port access and treatment in the awesome playroom that they have at the MDA Proton Center. Wonderfully small and personal toy room exclusively for radiation patients. Infact...this entire BUILDING is for radiation I have no clue why I am excited about the We are already exclusive. Duh. Moving on... hah! They brought us back to the big "space ship" as Bennett calls it right about 9:30am.  After a lot of hustle and unnecessary coddling on their part I told them to please stop. He understands that he is about to do "something, though he has no clue what that something is"...and that they need to not beat around the bush. Bennett does best when you go in and are direct in his treatment. Just GET IT OVER WITH (mentality). After Mommy was able to coach them in that direction, that is just what happened. He fought the anesthesia, but finally went right to sleep. They came out to get us after 1.5 hours to find our little man a bit rattled, but for the most part content. He handled the first radiation treatment like a champ. :) We went back to our temp. apartment to rest...and he did REST. We also enjoyed yummy cookies from Sarah and Jan! ;) Thank you! He napped for 4 hours, and then woke up to eat at 6, and then went right back to sleep at 8. I feel that radiation will be hard on his little body...but hoping and praying that it will fix our little boy. We have to be back at MDA tomorrow at 7am...-Mommy Nester

Tuesday (01.08.15):

Mommy and Bennett arrived solo to this mornings appointment. Daddy had to go home last night to our house in Katy, so we were blessed to have Aunt Lizzie, one of Mommy's Best Friends come and be there for us this morning! ;) We met her in the playroom and while Bennett played and then went to get his vitals, we were able to catch up and chat while enjoying Starbucks. :) They brought him back right at 7:30am, right on time! This morning there were no issues on his anesthesia procedure. I was able to bring him in the proton room, hold him on my lap, tell him he was going to take a quick nap and it would all be ok, and then wait for it to take effect. Other than holding on to me and being afraid for a moment, he handled it wonderfully. They brought us back in at 9am to a happy boy in recovery. Radiation went well, so we are now heading back to the apartment to rest. Back tomorrow at 7am. We got a surprise visit from Ms. Traci with lots of awesome presents for little man, which is GREAT! We needed a few toys for him to play with at the new place! -Mommy Nester

Wednesday (01.09.15):

We arrived at MDA Proton Center at 7am this morning, Mommy and Daddy were able to both come to be there for him since Daddy didn't have to be at work until 9! :) We got checked in, took vitals, and then went to play in the play room! ;) After a short time we were taken back to the "spaceship" and little man was put under for radiation. He did wonderfully again, hardly any complaints other than wanting his Mommy. Definitely a Mommy's Boy. ;) So far the only side effects from radiation have been exhaustion, which we anticipated. I haven't noticed any nausea yet...hoping that we don't. and no hair loss, thank the lord. :) After he finished we ran back to the apt to get our things and then went home to our house for the weekend... so glad that we get to be home in our own beds for once. :) Until next week...-Mommy Nester

Friday, January 2, 2015

January 2, 2015

Today we went in for our usual therapy sessions at TCH Main Campus and then ventured over to TCH West Campus to have our Pre-Radiation MRI prior to our start date next Wednesday. As usual, it was easy as pie for our little man....I swear I think that he could access himself at this point. lol. He was under for about an hour, and after he came out of recovery we headed home for chicken, fries, sprite and cuddles in the big bed while watching Frozen...for the millionth time.... Dr. Rednam (Oncologist) called to let us know that the results came back the same as his previous MRI Dec. 1st...which is good. So we are a go for radiation next week. Fingers Crossed that this next 6 weeks will kill this cancer. Love, Mommy Nester