Chris Sanderson's Journal
AND WE'RE BACK...
Written Jun 7, 2012 7:28pm by Brogann Sanderson... AT THE HOSPITAL!Yesterday morning Chris complained of severe nausea, drastic and sudden vision impairment, overall weakness, and some minor disorientation. Just like last Wednesday, he insisted on going to the hospital, so I drove him down the road the emergency room at Capital Health Hospital. Once there, while Chris was being triaged, I texted Dr. Andrews down at Jefferson about the situation and received a call minutes later from him instructing me to drive Chris immediately down to Philly. He was concerned about a possible bleed and said that processing him at Capital Health and having him transported would take too long. He wanted to see Chris ASAP.So, I put Chris back in the Honda Pilot and drove him down to Jefferson. Dr. Andrews and a number of people from the research team met us outside the neuroscience building when we arrived -- I joked with the nurse that it was very "Grey's Anatomy" of them to greet us like that. We got Chris into a wheelchair and up to ICU where they did an immediate CT scan, which, thank God, indicated no bleed. That was a huge relief and we spent the next several hours doing a slew of tests to try and put the puzzle pieces together. Although he was sick to his stomach and his heart rate was high, Chris was stable the entire time, and he began to feel better after about an hour. Dr. Andrews attributed this improvement to nothing more than the combination of IV fluids, tylenol, anti-nausea meds, and oxygen. Later in the afternoon they began a different antibiotic to continue to treat the infections with which Chris has been dealing the past week. The hope was that this particular IV antibiotic would be easier on his stomach but still do the trick.Even though the CT scan looked fine, Dr. Andrews wanted another MRI just to be sure, so that happened mid-day today, and the results were that everything is stable (no other details yet). So, the main culprit of this most recent crisis appears to be... dehydration.We are still dealing with the swelling at the craniotomy site, increased weakness in his limbs from the steroid, and some neurological symptoms that are creating a tangled web of behavioral, psychological, and personality issues... and also really complicating matters. On the one hand, it is a huge relief that this episode does not seem to be anything serious. On the other hand, it does represent another dip in our roller coaster... a stressful mini-crisis that, frankly, we didn't need. And to think it could have been prevented with a little bottled water...Anyway, Dr. Andrews increased the steroid which will probably help Chris feel better and improve his speech and vision. He also changed the antibiotic to something that might be a little easier on Chris's stomach, just in case it was part of the reason Chris wasn't feeling well. Unfortunately, increasing the steroids will also further deteriorate Chris's muscles, which will make it even more difficult for him to get around.Sadly, I think he is close to not being able to walk or get up the stairs unassisted -- a shift that will profoundly impact him as well as the level of care that is required in our home. Doctors are measuring an even amount of weakness on both sides of his body, which points clearly to the Decadron and not to tumor growth in areas of the brain that control motor functioning as one might worry. The plan is to try to wean Chris down again eventually, but to do so at a much slower pace and perhaps after a few more positive MRIs to be sure that the tumor is indeed subsiding in some of his more critical areas of functioning like speech and vision. The question is how weak his legs and arms will be when we finally get to that point, and how difficult it will be for him to climb back if he loses mobility between now and then.Hopefully we continue to see positive MRI results. Hopefully the infections and the fluid at the craniotomy site resolve. Then, hopefully Chris starts to feel better and also starts to better understand the situation, which gets him up and moving around more and relieves some of his anxieties about his care. Then, once we turn the corner with some of these more critical issues, hopefully we can successfully taper the steroid and begin building back some of Chris's muscle mass to improve his strength and mobility.I realize these are ambitious goals... highly dependent on a number of different issues and scenarios working out just the way we want them to. But, this latest set of problems played out like a domino effect of different complications that were independent from, but also related to, one another. It was, (and still is), hard to tease out what is causing Chris's symptoms and how best to treat them. And, our inability to get control over the situation has overshadowed what could be the most important aspect of the last 3 weeks -- that his MRIs show improvement and that the vaccine therapy could be working. So, I do not believe that it is entirely unrealistic to think that we could turn things around... that maybe we are on the right track now with his treatment... that, once these primary issues are resolved, the dominos could fall in the other direction and Chris could be back up on his feet in no time.Chris should come home tomorrow. We are scheduled for another MRI and exam at Jefferson on Tuesday. I will be sure to keep everyone posted.Thank you for checking in on us.~ Brogann
HOME, BUT NOT WITHOUT DRAMA
Written Jun 2, 2012 10:31am by Brogann SandersonChris has been home for about 24 hours. He was discharged on an antibiotic called Keflex which he has now been taking for about 48 hours. While we are happy to have him out of the hospital, Chris is really not feeling well so we are anxiously trying to manage the situation from home. It is very difficult to figure out exactly what is going on with him -- which issues are causing which symptoms -- and therefore how to best to treat him at this point.The visible infections on his head and leg are essentially unchanged and his fever is hovering at an acceptable 99.0. His leg rash seems a little better but he is complaining that his foot and leg hurt a lot and is having trouble walking on it and putting pressure on his lower extremities. And the area near his craniotomy site is still very swollen and red, but it is not oozing any fluids or getting worse, so, at this point, my instructions are to just wait and see if the antibiotic takes hold over the next few days.Additionally, Chris does seem slightly worse neurologically. Expressive language is extremely compromised, (even more than it was earlier in the week), which makes understanding how he is feeling -- what hurts, what is feels better or worse to him, what is bothering him the most, etc. -- very challenging. And he is definitely more out of it than I have ever seen him -- not following the medical information, not navigating the house as he normally would, not entirely comprehending what is going on around him, and so forth. I just saw him eat a bowl of Lucky Charms with no milk and a fork, if that gives you any idea of what I mean. Chris is also complaining more about his vision.I have been in touch with Dr. Andrews. He believes that we are dealing with two separate issues -- 1) the infections, which are creating the pain and weakness in his body, and 2) increased neurological symptoms due to the steroid taper. The hope is that the antibiotic will start to treat the infections in the next day or two. And, while we could bump his decadron dose back up to address Chris's frustrations with vision and speech, increasing the steroids could suppress the effectiveness of the antibiotic. Right now, controlling the head infection so that Chris doesn't have to have another surgery is the priority, so it seems we just need to wait this thing out for another day or two and Chris is just going to have to cope with these deficits.I feel bad for Chris because he really doesn't feel well and is quite anxious about the situation (probably in part because he is not 100% mentally), but the positive news about the MRI this week, as well as the fact that Chris is not having any more severe tumor symptoms like headaches or seizures, makes it a little bit easier for me to be patient and reassuring. Obviously I am keeping a close eye on him -- monitoring his fever and checking the infection sites regularly -- because the last thing I want is for things to escalate unexpectedly. I trust Dr. Andrews completely, but I also know that these funky medical situations... when things seem sort of in control, sort of out of control... are when bad stuff happens to people, so I am a little on edge.One last note: Capital Health Hospital here in Hopewell, where Chris was initially admitted to the ER on Wednesday, called yesterday to say that Chris's urine sample detected an infection called Group B Strep. (Moms out there might recognize that infection from when you were pregnant.) I don't fully understand what this means -- if this is the source of both infections, if it is an additional infection, if it is the only infection? Dr. Andrews is having Capital Health run "sensitivities" to see if there is a resistance to the Keflex antibiotic, in which case we may need to switch to another medicine. This sensitivity testing is a culture that will be back in about 24 hours, so that could provide some interesting information to help us determine how best to proceed.So, that's about it from the Sanderson front. I am exhausted and so disappointed that we are unable to enjoy this beautiful weekend and absorb the good news about the MRI. But, hopefully we will turn a corner here soon.Thanks for taking the time to check in on us.~ Brogann
Written May 31, 2012 12:41pm by Brogann SandersonSo, Chris is back in the hospital, this time with a bizarre combination of symptoms pointing to two different unrelated infections -- 1) an internal infection between the skull and scalp near the craniotomy site, and 2) a skin infection called cellulitis on his right shin. Dr. Andrews feels these infections are unrelated to each other and also unrelated to the trial protocol itself, but they do need to be addressed.The cellulitis looks like red rash on Chris's leg that is tender to the touch, and it is the reason he wound up in the ER yesterday. Although Chris slept fine on Tuesday night, he was in excruciating pain when he woke up in the morning yesterday, and he felt like the pain started in his right foot and was "crawling" up his body. Once at Capital Health Hospital Hopewell, he had a slew of tests (leg ultrasound, CT scan, chest x-ray, bloodwork, etc.), but, ultimately, the folks there had no idea what was going on and seemed a little hesitant to treat him given his extensive medical history, recent surgeries, and participation in the trial.Chris was transported down to Jefferson in Philadelphia so that he could be treated by Dr. Andrews and we arrived here around 3pm. Unfortunately, there were some significant delays and communication problems yesterday, which made for a frustrating evening and early part of the morning. Dr. Andrews was in surgery and unable to see Chris until just a few hours ago. But, things seem to be under control now and moving in the right direction and Dr. Andrews has assured me he is in charge.Chris received some antibiotics at Capital Health yesterday. The pain in his legs has subsided quite a bit and his fever is mild. So, for now, he is stable and much more comfortable. And, at this point, the cellulitis rash, which could be due to any number of things including an ingrown toenail that had been bothering Chris, is not getting any worse.The head infection, which looks like a large swollen and red area right near the incision, is a surgical complication that is more common in patients who have had multiple operations. It could be related to the titanium mesh plate that Dr. Andrews used to secure Chris's skull back in place at the end of the surgery -- perhaps his body is rejecting that foreign object for some reason. It is really impossible to know at this point, but this is definitely the more serious of Chris's two problems. Ironically, I may not have noticed the swelling on his head had the pain in his legs not brought him into the hospital and stumped the doctors at Capital Health. The plan is to start Chris on antibiotics here at Jefferson and see if that successfully treats the infection in his head. These antibiotics should also eventually resolve the cellulitis on Chris's leg, so, at this point, there is nothing more we are going to do to treat that issue.Chris will be here at Jefferson for at least the next 24 hours for observation. If the infection improves or remains stable, Chris will be discharged tomorrow on a full course of an oral antibiotic and best case scenario is that this takes care of the problem entirely. Worst case, Chris's symptoms get worse despite the antibiotic -- the swelling increases or becomes more red and hot, the incision begins to leak fluids, or his fever spikes -- and Chris needs to have another surgery to drain and clean out the infection and replace the titanium plate that could be causing all the trouble. The surgery would not be as serious as Chris's craniotomies because the infection is actually outside the brain, but it is still another operation -- taxing on Chris's body, our family, and our entire support system.If Chris goes home tomorrow on schedule, he would remain on track with the vaccine trial protocol and we would just pick up where we left off with those appointments and plans for Chris's care. This has been an annoying set back, but we did get a free look at Chris's brain with another MRI last night, and, remarkably, there is even more improvement. In just 36 hours, the tumor has shrunk even more! Dr. Andrews showed me the images this morning and, this time, his top research nurse, who asked if she could take a look with us, was the one with goosebumps and watery eyes. She asked if she could give me a hug and said to me as if I didn't realize, "Brogann, these are your husband's scans! This is amazing!" I smiled and said, "I know... so let's get him out of here!"Fingers crossed that the antibiotics do the trick and we can get back to riding that wave of positive news from this week.~ Brogann