Recovery and new research

There have been so many updated in such a short period of time but I will try to touch base on all of them. The hospital journey jeff has been on, has been full of unanswered questions and trials as he has made his pushed through to recovery. Jeff was showing improvement everyday with little to no interventions from the drs and the general consensus was that these issues with temperature regulation, cognition, decreased heart rate, seizures, swallowing, balance, speech (did I miss any?) they are all due to delayed effects of the radiation. No one really knew what was going on but drs like to give answers even if those answers don’t totally make sense. I guess patients like to hear something other than some of the smartest people in the province have no clue what’s happening to you. We settled on not knowing and started focusing on the future. We requested Jeff to bee seen by the rehabilitation drs at the Glenrose and on Monday morning they gave us the good news that Jeff would make a good candidate to inpatient rehab lasting 3-4 weeks. I was so happy that Jeff was going to receive those supports and so happy I didn’t have to try and fight for rehabilitation from home. Monday was also Jeffs swallow test. When Jeff first came to the hospital I informed the drs of some previous scans he had had that showed signs of possible aspiration and because of Jeff’s weakness and because they still were unsure as to what was causing all of his symptoms, they didn’t allow him to eat. The days went on and things didn’t resolve so they gave him a feeding tube. It wasn’t until a few days later that they put a camera down his throat as a way of seeing if things in his throat were working properly and they also wanted to make sure there were no masses in this throat preventing food from going down. They found no masses but did notice that there was a delay in his food as he swallowed which put him at high risk for aspiration. They restricted all oral intake except ice chips. The last 4 weeks have been difficult for Jeff not being able to eat but on Monday they took him for fluoroscopy and were able to see a live x-ray of the food they gave him and how he swallowed. It was super interesting to watch and he did great on 90% of the exam. It wasn’t until they gave him a pill with water that they noticed the pill go down the right way but some of the water made its way down his trachea. This means that the speech pathologist allowed him to eat but with some restrictions. He can have easy to chew solids and thickened liquids. It was a joyous occasion to hear he could eat again and this morning he had waffles and an egg! This afternoon the feeding tube came out and now he’s on his own to get his nutrition in with meals. It’s a slow process as his stomach isn’t used to real food but its good to see him without that tube in his nose. Yesterday was also a big day in terms of diagnosis’s and the internal medicine team came to talk to us about the results of the PET scan they did last week. This scan showed signs of autoimmune encephalitis which is a disorder in which antibodies produced by our bodies to protect us turn and start attacking healthy cells (his brain). This disease is rare, hard to diagnose, and seriously cutting edge. It wasn’t even until about 10 years ago that is started showing up in the research. This is incredible and unnerving news. So happy to have a differential and so terrified for what this could mean for the future. The treatment they are going to try with Jeff is IVIG which is intravenous immune globulin. Google it. It’s super interesting. This IVIG was started today and will last for 5 days. When the 5 days are up, they will reassess his cognitive function and physical abilities and compare the results to the test they did today. We are very excited to see what this treatment could do and will patiently await the next 5 days.

Next steps

It’s been 2 and a half weeks since jeff came to Edmonton and was admitted to the hospital. Every day he gets stronger and every day the doctors do their rounds coming to tell us of the new test they thought to do because maybe this could be some obscure medical condition no one thought to test for before. Every day they come back to tell us the results were negative and they still have no answers for us. The seizure Jeff had at the beginning of his admission into the hospital was his lowest point here. He was unable to move his right side and would only wake when the doctors woke him for more assessments. He was given a tube from his nose to his stomach since he was at high risk for aspiration and he was closely monitored. Since the seizure, Jeff has regained streangth on this right side, he’s been able to walk with a walker 200 meters and they even tried a few steps without the walker today. He has been awake during the day reading National Geographic and playing games on his IPad. Jeffs mom and I have been taking turns being here at the hospital and being at home with the boys and every time I come back to see him, he is stronger and more alert. Jeff is still unable to eat since the last swallow test showed a delay in the process of swallowing with still keeps him at high risk for aspiration. He will have another swallow test early next week which will determine the next steps. If he passes, he will be gradually introduced to foods again and if he fails, he will be given a peg tube and get nutrients through that which is a tube in his abdomen going into his stomach. The last diagnostic test the doctors could think of is a PET scan. This will show any malignancies in his body that could support the neurologists differential diagnosis. At this point the neurologist is the only one to come up with a differential and he concluded this could be one of 2 things. This could be a delayed effect of the radiation Jeff received when he was having cancer treatments or this could be a paraneoplastic syndrome which is basically the body creating antibodies against a current malignancy and those antibodies are attacking not only the malignancy but also healthy central nervous system cells. Both of these conclusions would explain Jeff’s symptoms and both are equally as scary. We could be looking at a new baseline for Jeff. Looking too far into the future only brings anxiety and grief so our next step is to think about today.

Unknown

Jeffs journey over the past few month has been the epitome of a roller coaster ride. He's been tossed around and turned upside down. Since Jeff found out about the new lesion on his brain scan, he was put through a plethora of test trying to look for cancer markers or metastasis. An MRI of his spine, a CT of his chest abdomen and pelvis, a spinal tap and another MRI of his brain all showed no sign of metastasis, no cancer markers and the repeat brain MRI showed the lesion had actually shrink. It was a good day with celebration when we heard the good news but in the back of our heads we knew something else was going on. Jeff's speech was the first thing we noticed. His speech has been regressing in his ability to speak loud and get certain sounds out. Next we noticed his balance, he has been unsteady on his feet with some days being worse than others. Jeffs memory and comprehension seemed to be impacted as well. He has always had a more difficult time with memory since he was diagnosed with a brain tumour so changes are often difficult to spot. I mentioned concern to Jeffs oncologist in the middle of April and he stated he needed to collaborate with other specialists. About a week later, Jeffs symptoms progressed to diarrhea and vomiting. I suspected an infection since the oncologist did mention they may have seen aspiration on the chest CT but he didn't seem too concerned. I decided to take Jeff into the hospital to be sure we weren't missing something easily treatable. They did a chest x-ray and blood work but were unable to find anything conclusive. Jeff continued to be unsteady, increasing confusion, and speech became more of a problem. There were days when Jeff stayed in bed until 5pm and would only get up to get a drink, go to the bathroom and then back to bed. On Sunday April 28th I went to work leaving the boys with Jeff. He was able to get them up and ready for church but I heard report from friends that Jeff seemed very unsteady on his feet to the point of needing help to walk to the car. Friends of ours were so great to take Jeff home with them to keep and eye on him and the boys were able to spend the day with their cousins at Jeffs sisters house. Things sounded particularly bad and I asked Jeff to get a ride to Bonnyville where I was and I would take him to the emergency room. We were incredible blessed to have some of my favourite nurses working that day and Jeff had a room before he even arrived at the hospital. It was quickly determined Jeffs heart rate was alarmingly low and he was moved to a trauma room where they put him on a monitor and pushed the first dose of atropine to try and get his heart rate back up. The atropine worked for a few minuted but his heart rate quickly dropped again. The next steps were an urgent CT in cold lake and then a plane ride to Edmonton. The drs weren't sure what was causing these symptoms and the specialists wanted to see him right away. It was a long night with several specialists stopping by to see Jeff. He was seen by the emergency room dr, the internal medicine team, the cardiology team, and then the neurologist. Jeff was started on a broad spectrum antibiotic, magnesium, and was given hydrocortisone. Jeff was unable to maintain his own body temperature and was 29 degrees when he arrived at the hospital in Edmonton. They put him under a bear hugger to help maintain his body temp and started him on warm fluids. He stayed stable for the night and Monday afternoon, Jeffs mom and dad came. The drs were still unable to determine the cause of Jeffs symptoms. I took off that night to go to my last few days of school and Jeffs mom and dad stayed with him. Monday night, Jeff experienced a pause in his heart rate when they sat him up to  give him his medications. This was quickly reversed but Tuesday morning saw the progression of new challenges when Jeff had a seizure. He continues to recover from the seizure which could take a few days. Drs are continuing to run tests but have still been unable to determine anything conclusive.