Friday morning

Sorry for the lack of updates this week....  I  (Bill) have worked a lot this week and with the early mornings re pretty tired.  Brody just finished his 10th radiation treatment....  the verced works very well after  he finally takes it....  doesn't like the taste of it at all.  It works fast and within 10 minutes he acts like is drunk...  he is very co-operative though and does fine...  the effects wear off after an hour or so.

He has been taking naps every day.

Brody is going down to his grandparents later today and i'm sure he will enjoy the few day break...  he  his treatment on Monday as well as does another chemo round Monday too.....

10 radiation treatments down.....  13 to go.

His only side effect so far has been a bit of diarhea

Thats a out it....  more later.

Bill

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Saturday

Brody stayed awake again for his radiation therapy yesterday but he was difficult and the staff at the hospital have to get the things out to start accessing his port before he will agree to stay still actually go through with the radiation therapy-- this is kind of a trick he uses on Mom and Dad to be difficult... he will refuse to take an oral med until we go to get the syringe to squirt it in his mouth... he will usually take it before we get back with it... does the same thing for the nystatin (swish and spit)-- we have to go get the swabs before he will do it....

Because of this they will be keeping him with the early morning appointment with an anestesiologist there just in case... as if there is difficulty with him later in the day it will throw off the schedule for other patients getting their therapy.

They did write a prescription for versed-- this drug produces a sleepy effect and also is for anti anxiety-- it also will produce a short term amnesia effect so he likely won't remember the procedure.

Anyway, he did earn another Thomas train yesterday for "finally" doing well.... I got to watch him do it over a monitor for the first time and he did really good... just moved his eyes and his mouth a bit-- the entire radiation session (after they get started) lasts less then 10 minutes.... I imagine it is scary to a child with all these big things moving around him with nobody else in the room with him... I was very proud of him for doing so well.

They radiation oncologist finished planning out his therapy several days ago and Trish just told me yesterday that they will only be doing 23 sessions total (rather then the original 30-- 6 weeks, 5 days a week)... with 5 down he has 18 left to do... will finish up if all goes as planned on August 11th.

We do have some bad news though... apparently to fully treat the tumor "bed" they will severely have to radiate his left kidney-- because of this they expect him to lose about 80% of the kidney function in this kidney-- a person can live with just one kidney-- but we obviously don't want to lose function in his only spare for his right one..

Really thats about it... we have been pushing zofran (anti nausea medicine) on him all week but he hasn't seemed to really need it... we missed a dose here and there and he seems to feel fine... apparently the nausea effects will get worse with the more sessions he has... hopefully it won't be too hard on him. Other then the referred pain in his leg, he seems to be in good spirits most of the time and has been having fun getting spoiled.

Thursday

Brody has managed to stay awake for 2 radiation therapy sessions now.... we still prepare him as if he were going to be put under (no food or water and numbing cream on his port) if he can do it again tomorrow they will schedule him for a later appointment and let him eat ahead of time...  be a lot easier on everyone.

Brody has been earning some toys with his bravery...  mom took him to the African wildlife park after his treatment yesterday and he got super smash  brothers for wii yesterday and a few other things.

He was less scared today then yesterday...  hopefully he can keep it up.....

More later

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Radiation therapy started

Brody had his 2nd radiation therapy session this morning.. he was put under anestesia for it and it takes him a bit to wake up.... the actual time he was in there for it was less then 30 minutes it takes him about an 45 minutes to an hour after to wake up and they let him leave.  It is hard for us in that we have to get up at 6 am to be here by 7.... Trish has to be up by 5:15... she is really not a morning person... so far, so good.....

This afternoon we will be going back to the radiation therapy room to practice lying still.... if they are confident he can do this they will forego the anestesia and we can be in and out of there quick and he won't have to deal with them poking him or recovering from anestesia..... hope he can do it.... 28 sessions to go...

More later...

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Sunday

Brody has been doing both good and bad this week. He did real well managing his nausea this chemo round. As usual, he didn't eat much of anything for about a day and a half. His appetite came back pretty good on Wednesday. He didn't vomit at all for the first time (his first 2 days after the 3 drug chemo is usually rough for him) He has been complaining of leg pain intermittently and a lot of the time it hurts him bad enough he won't stand on it. We believe he is getting some referred pain from the nerves up near where they did surgery… the pain is in his left calf which is the same place it hurt when he was initially hospitalized in march. We are hoping it will resolve itself but if it continues til Monday we will mention it to his doctor on Monday. We did all go swimming in the pool on Wednesday and Brody and his buddy Lucy kept wanting to climb up the ladder and jump into the water with me catching them—it wasn't bothering him at all when he did that. It is not consistent pain at all.

He was supposed to start his radiation therapy on Thursday but they pushed it back to this Monday so the radiation oncologist could do some more planning on how they will irradiate the area. We are not looking forward to the radiation therapy. He will have to be sedated if he cannot lay perfectly still and he did not seem to tolerate the anesthesia well (he had nausea that night) when he was put under for his planning appointment. That and the radiation therapy will cause nausea and lack of appetite. He will be getting the radiation therapy at Flower hospital (he has been treated up til now at Toledo hospital) and will have to be there before 7 am on Monday thru Friday for the entire cycle… we will have to get on a much earlier daily routine which is difficult in the evening when it doesn't get dark til 9 pm. I'm (Bill) is the only one that wakes up that early on a regular schedule for my job.

While Brody is getting the radiation therapy (at least 5, but probably 6 weeks) he will not be doing his weekly Vincristine (chemo) that he normally does as an outpatient. He does have to go and get blood drawn on Monday and he will get another blood transfusion if he needs it—he has needed it the last 3 times he got this chemo combination so the likelihood is high.

That's about it—as usual he has been kind of stubborn about taking his meds but has been doing it and has been keeping them down—he just likes causing stress for Mom and Dad…

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Happy 4th

Brody had a pretty good day... played in the pool and waterslide.... feel pretty good.

He resumed his chemo today.... nausea should be hitting any time now.

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Playing Mario on DSI's

Brody continues to improve. He resumes his chemo on monday (he will be admitted overnight) and starts his radiation therapy on thursday....

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Brody's home and doing well

Brody got to come home from the hospital Tuesday evening.  He has been eating well and contuing to feel better each day.  His left leg is still a little weak.  At times he does not want to put any weight on it and when he does he walks with his left foot pointed outward.  But he can walk and he has started to work on pointing the left foot forward.  I think he will walk better with time. 

Brody had a fun day yesterday.  Brody and I went to the African Safari Wildlife Park with my friends Carolynn and Marissa.  We got to feed the giraffes.  Brody loves to go there and feed all the animals but especially the giraffes.  Brody kept asking to go back again today too but I told him we needed to go pick up his brothers from Papaw and Grandma.  He decided seeing his brothers again was even more exciting.  Brody really missed them. 

We are all back home again and looking forward to enjoying the upcoming Holiday weekend.

Thank you again to everyone for all your prayers and wishes.  They seemed to have helped.  Brody is doing very well.

Thank you again