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by helen, on July 1st, 2012 ( Australia, Uncategorized) Dare I say it – yes we are still waiting!
 We did get some preliminary report of the biopsy. The senior consultant of Infectious Disease came to see Steve. He said it was good to finally meet the person they’ve had so many discussions about. He reamed out a long list of test they had done which I can’t remember much but included TB, brain worms and certain types of bacteria/microbes. All test results were negative. Things like ciguatera, vCJD were eliminated very early on. The biopsy showed no signs of micro organisms so critters in Steve’s brain have been ruled out.
Our neurology consultant also visited to let us know that his first impression from the biopsy is that Steve has an aggressive attack of MS. It’s not conclusive yet as they still have to complete the full cell stain test. Steve’s lesions patterns are unusual and not quite typical of MS so they have to make sure lymphoma is completely ruled out. The full result should be back on Monday, latest Tuesday. What they do know for certain is that there are many inflammations in Steve’s brain; therefore they immediately started a three days course of steroid treatment intravenously. Already Steve is showing marked signs of improvement. He is more alert, energetic, cheerful and his balance is coming back.
We also celebrated a lovely diversion this week. Cousin Sarah and Russ’ oldest son Christopher received the Premier’s VCE Award for
outstanding achievement in Further Mathematics. The whole family including Chris’ younger brother Jack and sister Ross and Patrick (the trainee guide dog they have been looking after for the past year,) attended the award ceremony and tea, where the Premier of Victoria presented the certificate. It really is a brilliant achievement as only a few top students from thousands in the State of Victoria get this award. Chris has also been accepted to Stanford University in the USA and will be starting there this coming September. So lots of preparation and excitement along that front too.
Today the family left for their much deserved winter vacation to Queensland. They will be away for ten days, hopefully to enjoy plenty of sunshine, beaches and fishing. I haven’t been left entirely home alone. Besides the stick insects, frogs, chickens and the cat, I have been introduced to Sarah’s neighbors and friends who have kindly told me to call on them for any help and also to invite me for a meal or two in the evenings after visiting Steve. I am still being well looked after here.
by helen, on June 29th, 2012 ( Australia, Uncategorized) The waiting did not end.
On Tuesday after looking at the results of the spinal and brain MRI, the senior consultant did not feel convinced that it was MS. He said that the type of lesions/abnormalities seen in his brain were very unusual and rarely seen. There were elements of MS but more as well. He wanted to study the scans further, get a couple of second opinions and talk further with the infectious disease doctors. He was reluctant to give Steve any steroid type treatment as it might just mask the real cause. He also ordered another brain MRI to check if there were changes in the abnormalities i.e if it’s getting worse or stable.
On Wednesday, Steve had another brain MRI and a test called a Visual Evoked Potential. One of the infectious disease result came back negative.
Yesterday (Thursday) was Steve’s birthday. For a birthday present we were hoping for some positive results. Mid morning our senior consultant, the head neurosurgeon and about ten member of the team (no exaggeration) turned up. The MRI showed that Steve’s lesions are getting worse and they wanted to do brain biopsy straight away. So yesterday afternoon Steve went down for his brain biopsy.
The operation went very well. They were able to get a good sample for biopsy in a safe area of the brain, very near the surface, so the intrusion was minimal.
In recovery I asked Steve how he was feeling and he said “really shitty” so I knew he was OK. He was very lucid, thirsty, hungry and wanting to wee, all good sign. I left him last night after his pain medication to get a good night sleep. I got a good night sleep too.
This time I think the waiting is almost over.
by helen, on June 25th, 2012 ( Australia, Uncategorized) On Friday we got back Steve’s mid-body scan result. Everything looked very good. No nasty lymph nodes detected. Good news really although the doctors still couldn’t give us a sure answer to the cause.
Since nothing was happening over the weekend Steve begged to go home to Sarahs. The doctors agreed but made sure Steve was aware that he was still an in-patient and that he had to be back in his hospital bed first thing Monday for a spinal MRI scan and the doctors round.
It was wonderful having him home at Sarahs. We had a lovely time with the family and also enjoyed having our own private time and proper cuddles. On Sunday, our friends Brian and Janine who lived about an hour out of Melbourne came to visit. They are the friends who with their two teenage children Ben and Holly joined us aboard Dignity in Fiji last September. Steve really appreciated the visit and although tired felt lifted by the visit.
We checked ourselves back into the hospital ward early this morning and the testing soon started. More blood samples were taken and Steve had a long MRI scan done of his spine. The scan took almost two hours.
The doctors came to see us midday to update us on some protein result and the direction they are looking into. They have more or less ruled out lymphoma cancer which is really good news. They said the protein result they received supports MS but they are not 100% sure as this result can still be cause by other problems. They continue to look at bacterial/virus hence the extra blood samples taken earlier. They are waiting for another blood result which should come back in a day or two that could help towards identifying MS if he has it. The spinal MRI scan could also help towards identifying MS and we should have the results tomorrow.
I believe our wait is nearing its end.
by helen, on June 21st, 2012 ( Australia, Uncategorized) Steve was admitted into Monash Hospital through the Emergency department. He is now settled comfortably in the Neurology ward and under the care of an excellent team of neurologists. Over the past two days he has had many many blood tests, a lumbar puncture, another MRI and other investigative procedures. Physically he is in very good health. His general blood results have all come out fine. Kidney, liver, hormone levels etc. are all fine. The initial result of his spinal fluid was also good, just a higher count of proteins than normal which they expected. Now we wait for the specialist test results of blood and spinal fluid which will take another day or two. The MRI scans clearly shows many scattered small lesions throughout Steve brain. However the new scan also showed that the blood vessels looks fine which is good news indeed. I think the team may have eliminated a couple of serious causes they though it could be but are still very concerned about Steve’s worsening condition and what the exact cause could be. Tomorrow he is having a chest scan to see if they can see anything similar in that area. We have been asked more detailed question about the countries we have visited and the type of food we have consumed. So they are being very thorough and investigation many possibilities. I think we need House! No, the Neurology department at Monash has an great reputation and I have been very impressed by their care, efficiency and professionalism. I am pretty confident that they will get to the bottom of this and find the right treatment for Steve.
Thanks again to everyone for all your best wishes, thoughts and words of encouragement. Much appreciated.
Helen
by helen, on June 18th, 2012 ( Australia, Uncategorized) Steve had the MRI this afternoon. Early this evening our ophthalmologist rung up to say they did find abnormal activities in Steve’s brain. He has arranged for Steve to see the neurologist at Monash University hospital early tomorrow morning. He suspect Vascuailitus or Lymphoma but the neurologist will have a better idea exactly what it could be. So we wait. Its very hard.
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