Thursday 9/18/14

Sorry for the lack of updates-- been very busy-- this post will be fairly brief but will get everyone up to date on his condition.

Brody has for the most part until recently been feeling ok-- he is still not able to eat and gets all his nutrition via IV TPN... He has felt not great but not horrible either-- his pain is intermittent but is controlled by pain meds and he still sleeps well at night He typically sleeps 12 to 14 hours a day (usually 12 hours and a 2 hour nap). We have of course remained quite busy with his care, work, housework, home school, appointments, etc...

Last week Brody started a new Chemo (Eribulin) which Trish mentioned in a previous post that we were considering. We went ahead and decided to try this new Chemo and it was administered last Wednesday. He was carefully monitored for a few hours as they do with any new chemo drug when a kid is first exposed and he tolerated it fine.

On Friday though Brody developed a fever again. We took him in for blood cultures, they administered a broad antibiotic, took urine cultures, etc... we got the first dose at Toledo hospital and had followup doses delievered to the house where we administered via his port after his TPN finishes. His blood cultures were negative but his urine out his Nephrostomy bag was positive for some type of staph bacteria (I don't know which strain) that should be covered by his antibiotic he was prescribed.

On Saturday we participated in the Toledo Curesearch walk. Brody did not feel well enough to get up that early and since he was also fighting this infection and it was relatively cold that morning--we let him sleep in-- Trish and Geordi and Jaden went to the walk with some friends and the rest of Team Brodinator that was able to make the walk and had a good time... our team raised almost $4000 this year which is great considering the amount of time and effort we were able to put into the event this year.

I want to thank everyone that raised money and donated to curesearch this year--- it is a very worthy cause and it does help pediatric cancer research tremendously.

Anyway-- on late Saturday and into Sunday Brody began to develop a very sore throat-- our thoughts were that the new chemo was causing his mucus membranes in his throat to get raw (a side affect of alot of different chemo drugs) and the NG and NJ were irritating it further.

Brody did feel well enough to make the trip out to the African Wildlife Safari in Port Clinton, OH on Sunday (about 70 miles from our house) and got to feed the Giraffes which is one of his favorite things to do (will try to get some pics posted from Trish's phone)... he had a good time there.

 We took Brody into the Hospital (Toledo) on Monday and were able to meet with an Interventional Radiologist to see if we could get his NG and/or NJ tubes replaced with a G-tube and/or a G-J tube-- he agreed to try and we were scheduled for bright and early on Tuesday morrning for the procedure.

As it was explained to us-- they were going to purposefully distend his stomach with air and get it to push bowel out of the way and get the stomach to come closer to the skin surface-- the idea is to get the tube in his abodomen below the ribs-- with Brody's colostomy on the left side it would have to be above this and below the ribs-- unfortunately-- the stomach would not move where they wanted it so they had to abort (it would be very painful for him to have the tube between his ribs)... the pediatric surgeons at Toledo Hospital can surgically place a G-tube and this is somewhat more invasive then an IR G-tube placement-- we were told that we would have to wait 6 weeks to get it converted to a G-J tube-- with Brody's throat pain we wanted to have zero throat tubes if we were going to have surgery done.

We had previously consulted with a surgeon at Nationwide Childrens Hospital about having  a G or G-J done-- at the time we were of the opinion that his tubes were temporary so we declined but since after 2 months they have proven to be necessary and with his throat pain we have reconsidered-- Brody was very reluctant when we first mentioned this several weeks ago but his throat pain is so bad he really wants them gone and he is now all for this surger.. We were lucky to reach the surgeon we had consulted with before-- she was actually at the airport and heading out of town but she talked to Trish about Brody's options again and what they can and have done at Nationwide and referred us to one of her colleagues... we were able to get an appointment with him yesterday (Wednesday) morning and he arranged to get Brody put on the surgery schedule for this morning- he admitted Brody Wednesday afternoon so they could get all his meds in the system and make sure he was stable enough for surgery... Brody has been sleeping alot since monday-- his pain meds make him sleepy and he has needed alot with his sore throat on top of his Belly pains.

Anyway-- this morning they rolled him down to pre-op but unfortunately he had spiked a fever (he has had intermittent fever since Friday) and the surgeon did not think it was safe to do surgery today. We went back to his room. He later got some Tylenol this which squashed his fever and he actually felt the best today that he has felt in several days-- he watched Netflix (TV shows) and movies with Mom and Dad. He stayed up for about 8 hours straight today which is more than he has since he got this last infection. His throat while still very sore was not as bad as it has been and his voice which he had pretty much lost was back and so we are mostly calling this a pretty good day (after several bad days)...

As of now we are tentatively scheduled to have surgery on Saturday-- as long as Brody is well enough to do so... they switched his antibiotic to another one that hopefully squash his infection and fevers and make him feel better.. they are also taking new cultures. He had bloodwork done and his immune system is pretty compromised from his chemo/infection-- his ANC (absolute neutrophil count) is currently 120-- down from 2600 on Monday.... anything under 1500 is considered Neutropenic--- when he does resume his Eribulin-- we will likely need to decrease his dose-- it was scheduled for yesterday but with his infection and his sheduled surgery it is being held.

We are hoping Brody's surgery is simple and straight forward as this procedure normally is-- however it is possible there is some adhesions from the tumor that might complicate the surgery and we are hoping he isn't under anestesia too long and snaps back out of it right away and avoids time in the PICU like his last surgery--- the idea is to get him home soon. We are looking at getting a large bore G-tube placed on Saturday-- this tube will be large enough for them to pass a new J-tube through it  (but not obstruct his G-tube) and into his Jejudenum (where the end of his current N-J tube is currently)-- the J-tube will probably placed on Monday (we are hoping they might do it on Saturday so he can avoid a 2nd procedure under anestesia.

Geordi is staying at a friends house since his is going to public school-- Jaden is still being homeschooled and came down with us but went home with Trish's parents last night-- we were unable to get a room at Ronald Mcdonald house this time-- we are on a wait list--- Trish and I have been staying in Brody's room on their sofa/bed and an air mattress which luckily doesn't take up too much room in his room. We both of course like being near him if he needs us.. but is now a little difficult (for me anyway) watching nurses do what we have been doing for the last month or so.

We are all doing as well as can be expected.... 

I think that is it-- sorry if this "draft" is a little rough-- trying to write alot in a short period of time and get everyone up to date.

We are either too busy or too tired to write much lately.

Thanks to everyone that has helped us out with house and animal care and everything else-- making a difficult situation that much easier.

Bill  -- AKA Brody's dad-- Geordi & Jaden's too :)