After much thought, Bill and I have decided not to do neurosurgery yet. The primary purpose of the surgery would be to relieve pressure on the nerves in Brody's spine/spinal canal to hopefully relieve Brody's nerve pain in his left leg, back, and butt. The surgeon made it clear that he wouldn't be able to remove very much of the tumor but hoped it would be enough to help Brody's pain. Pain relief is very important, of course. And, at first we planned to do the surgery because at the time he was having a lot of nerve related pain. The next day couple days after making this decision, Brody's pain seemed to ease up a lot. It wasn't as severe nor frequent. So we changed our mind about proceeding with the surgery. If we were to do surgery we would prefer to wait until after we can determine/find a chemo regimen that can at least hold Brody's tumor stable. Otherwise Brody could go through the surgery, experience the extra pain from the surgery, and then have his tumor quickly grow back to the size it currently is and he's be right back where he started.
Unfortunately, today and yesterday, Brody has started to have more frequent and more intensely painful bouts of nerve pain in his left calf. It can last from 10 minutes to over an hour at at time. He did manage to sleep overnight for about 6 hours without any episodes last night though (Thank goodness). I am so glad he had a good stretch without any problems. He has been hitting his morphine button over and over and waiting for the soonest opportunity to hit again to relieve his pain. His bolus doses and basal amount have been increased upward again. But, still the morphine does little to help his pain. He has gotten to the point now where he feels it's pretty much a waste to hit the button because he no longer expects it to help him. He is very much reliant on Bill and his warm, massaging hands. Bill cannot leave his side. Brody needs him there for whenever the pain starts back up. (He doesn't think mommy can massage his leg as good as dad. I tried warming my hands in hot water first and trying to do it the same way it looks like dad is but I just do not compare, apparently. I listen to Brody and what he wants but, no good. He had some very severe pains this morning when Bill was not there and he had to let mommy try and help him. Unfortunately, I wasn't enough to make the pain tolerable for him. I don't think Bill could have made those episodes tolerable either though. Now, Brody totally doesn't have any faith in my leg massaging abilities). Bill has spent many hours massaging Brody's leg to help make the pain more tolerable.
Brody was started on a clonidine patch last night to help with the nerve pain. But, it takes 2 to 3 days for it to really start to take effect. Brody was able to swallow a hemp oil capsule tonight. If he can start taking the hemp oil capsules again regularly, hopefully it will help too. (The hemp oil capsules have helped past nerve pain tremendously. We are hoping it can at least lessen the pain he is experiencing now).
We talked with the Advanced Illness Management Team today about Brody's nerve pain a lot. They increased the morphine significantly today (unfortunately it didn't help much) and they plan to have us meet with a doctor tomorrow to discuss doing a nerve block for Brody to relieve the nerve pain.
Brody has made tremendous improvements in his ability to eat and drink. He hasn't vomited since Friday! This is very exciting. He has been enjoying eating chicken noodle soup broth with crackers, chicken tenders from Popeyes, animal crackers, goldfish crackers, and red tootsie pops. He has been able to drink larger volumes of water, cran-grape juice, and fruit punch capri sun. He is nowhere close to eating and drinking the number of calories he needs in a day. But he is able to enjoy some of his favorite foods and drinks without vomiting. (Previously, even when not eating or drinking, he was vomiting all his gastric juices etc).
We have been wanting Brody to get started on the chemo drug, Votrient. It is only available orally. Most of the absorption of this drug occurs in the stomach. So Brody had to be able to swallow it by mouth and not vomit it up for it to be effective for him. He has finally reached that point. He should be starting the medication tomorrow. Excitingly, there was a Phase 1 trial using this medication in children and in this trial there were 8 kids that had stable disease for at least 6 cycles. Seven of these patients had sarcoma (including rhabdomyosarcoma and Ewing sarcoma). Based on the analyses done by Genekey of Brody's tumor,this medication is one of the primary agents suspected to be beneficial in slowing down Brody's tumor. It certainly is not expected to stop his tumor by itself but it may help slow it down.
I am not sure if we will be able to do so. But I am hoping that we may be able to add additional chemo agents to the Votrient and hopefully have a better chance of stabilizing the tumor.
Brody had been fairly stable on cyclophosphamide and topotecan before we entered the HSV trial. We had to stop this combo due to kidney issues. His kidney is doing much better now that he has his nephrostomy. So I would not consider this regimen off the table so to speak. He cannot start the cyclophosphamide and topotecan right now though due to the high fever and positive blood cultures 4 days ago. He was started on Zosyn (IV antibiotic) immediately after the fever. The first blood culture was positive. No further blood cultures have been positive. The bacteria has been identified now and susceptibility testing show that Zosyn is effective at covering the bacteria. Brody will continue on the Zosyn for another 10 days. Due to the degree of immunosuppression with cyclophosphamide and topotecan combo, Brody cannot start these medications until it has been at least 2 weeks since his last positive blood culture and fever.
As I mentioned earlier, Brody is eating and drinking but not enough to meet his calorie needs. (I am very excited he can eat and drink the things he loves and also that he can now take oral medications. We wouldn't be able to start chemo tomorrow if this weren't the case. And, he can take his high CBD hemp oil capsules again. This should help his nerve pain, nausea, increase appetite, and also may possibly help slow the growth of his tumor). Anyhow, Brody does still have delayed gastric emptying and he has sections of his small intestines that are narrow due to tumor compression. We have decided to let interventional radiology insert an NJ tube this week. The tube will run through his nose and down to his jejunum. This will get it below the level in his small intestines that are not moving well and are narrowed. This way we can feed him through the NJ tube. He will still be able to eat with the NJ tube in place and still enjoy the things he loves to eat. But, we will then be able to supplement additional calories on top of what he eats through the NJ tube.
Despite numerous painful episodes of nerve pain today, Brody did enjoy watching a few movies, eating some soup, crackers, and Popeye's chicken and talking with mom and dad. (Geordi and Jaden weren't with us today....Geordi has been in Toledo this past week with friends and Jaden spent today with his cousins at Kings Island). Brody is looking forward to seeing his brothers tomorrow. Brody is still tolerating the ridiculousness of everything he has been through but certainly longing for home. He especially misses his dogs. We are certainly doing everything we can to get him home as soon as we are able.
Thanks everyone for your continued prayers and support.
Thanks for the extensive update tricia. You guys are all in our prayers.
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