Increasing Pain and Nausea

Sorry (once again) for the lack of updates-- we of course, have been remaining very busy.

Brody has been having increased pain and Nausea the last week or so. The nausea hasn't been causing him to vomit or dry heave thankfully and we have 4 different medicines we can throw at it. so we have two of them scheduled every six hours but we have them staggered so he gets one or the other every 3 hours. The other two can be given every 4 hours as needed. We try to stagger these so if he does start to feel nauseous, we can give him "something" for it but sometimes he insists on getting something for it.

Brody's pain levels have been steadily increasing... his left leg hasn't been bothering him too much but he has told us that he can't feel much in his left leg-- he has a little bit of muscle control and can "sort of" stand on it. He was complaining about his left foot itching a few days ago and this really bothered him because he couldn't feel the scratching but he hasn't been complaining about his left leg much if at all the last few days. We have been continuing to put on his "magic cream" on his left calf and back and this has helped to control his leg pain-- we use a cream with ketamine and amyltryptoline in it (we were using it with lidocaine too but we didn't think it really helped much and it appeared to be drying/irritating his skin).

His belly pain has been increasing somewhat and his right leg has also been bothering him now mainly in his calf all the way around... we are unsure of the cause of this pain and it seems to come and go-- it can be very severe (Brody rates it a 9 out of 10) and his previous pain max (when he has to describe it on a scale) has never been more than a 6... his usual is a 3 or 4. We are thinking it is possibly cramping or maybe neuropathic pain from the tumor up in his spinal colunm-- we have begun to use the "magic cream" on this leg too.

In addition they (our oncologist/hospice doctor/hospice nurse) have been increasing his pain medicine dose the last week or so in an attempt to get him comfortable... the latest increase has seemed to help him now and he has been sleeping pretty good overnight without breakthrough pain. Yesterday he was up for about 9 hours straight (feeling mostly good the entire time) which is the longest stretch he has had awake in probably a month.

Trish and I have given up trying to sleep when we are taking our shifts with Brody. Per our schedule he doesn't go more than 3 hours without us giving him nausea medicines and he frequently needs us to do something between these too and he sometimes wakes up in the middle of the night and watches TV for a few hours. Trish has been taking the night shift and I take over between 3:30 and 6 am depending on when I go to bed. I've been trying to be in bed before 9pm.

As you can imagine we keep pretty busy... between keeping up with the house/meals, homeschooling Jaden, Brody care, appointments, etc... we have very little free time (except when everyone is sleeping-- like right now).

Brody has remained in good spirits throughout all of this-- lives in the moment as we all do and we couldn't be prouder of him in his ability to deal with everything he has to do or can't do anymore.... Brody passes his time mainly playing video games or watching TV he isn't really interested in reading, doing crafts, or playing board or card games right now. He really calls almost all the shots-- if Jaden is doing homeschool and Brody wants him to play call of duty with him (surprisingly Jaden does protest this sometimes).... School is paused.  He watches a lot of TV shows and hasn't really been interested in watching any movies lately.... it seems like he doesn't have the attention span to get through an entire movie-- he gets bored or sleepy before it's over.

Brody is pretty upset with Turner Broadcasting/Dish Network as they could not come to an agreement and so Dish has (at least temporarily) dropped the Cartoon Network-- Brody's favorite shows right now are-- Adventure time, Regular Show, Teen Titans Go!, and Amazing world of Gumball-- he has a bunch of these recorded on our DVR...his other favorite show is Rugrats-- these we have been watching on Amazon Prime and thankfully there are a ton of them. It is hard to get him interested in trying new things (like watching movies or TV shows)-- He has refused to watch the move E.T. although we are sure he would like it.

Jaden an Geordi have been very accommodating of Brody and we are very proud of them too... they understand that rule #1 in our house is to not upset Brody.

We have continued to get plenty of support from everyone and for that we are very thankful... the scout families have been stepping up again and have been bringing us meals twice a week-- if anyone else would like to help there is an online scheule here... 

http://www.takethemameal.com/meals.php?t=LJUQ3006

We have been mainly eating/cooking in the Camper in our Driveway (Trish's parents brought up) since the smell of most foods makes Brody Nauseous-- we have been using our crock pot quite a bit.

Anyway---that is pretty much how we are doing-- Brody's pain and Nausea while increasing have been mostly controlled and we have been getting enough support to take care of him properly and spend time with him and we have been remaining in good spirits despite all of this.

Thanks to everyone that has followed us on our journey and have been helping us in so many different ways.

Bill