“From the rising of the sun to the place where it sets, the name of the Lord is to be praised.” Psalm 113: 3
The Lord in His goodness to us has again provided much patience and strength and for this we are very thankful, as much has happened over the course of the last number of weeks.
As indicated in the last blog update we were very encouraged to hear from the doctors that the swelling Trevor was experiencing on his brain appeared to be as a result of the breakdown (treatments) rather than the further growth of his tumor. As a result Trevor was placed on a low dose of steroids and the doctors would continue to monitor his situation by regular visits.
A few weeks ago Trevor noticed that some of his original symptoms were beginning to return and of course this news was immediately passed along to his doctors. They in turn placed Trevor on a higher dosage of steroids and assured Trevor that he should notice results within two or three days. After almost a week having gone by and his symptoms progressively getting worse we again approached his doctors. Some changes were again made with regards to the steroids and we were asked to provide regular updates. After almost another full week and no improvement the doctors felt it best for Trevor to come back into the hospital in order to discuss this matter further.
Hence, this past Friday we met with his doctors where they informed us that the steroids were not working and that we would need to look at alternative treatment. They did advise that the steroids should have worked but in their experience they have come across a few instances where the steroids for some reason do not respond to swelling after treatment and unfortunately this appears to be the case with Trevor. As we were going to be seeing the doctors again on Tuesday anyway, we asked if we could double his steroids dosage (for the weekend only) just to be certain that this avenue of treatment has truly been exhausted. They agreed but as suspected the higher dosage did not have any impact.
Yesterday (Tuesday) we met with his doctors in order to discuss where to go from here. As indicated to us on Friday they did have a few different options. It was decided that Trevor remain on a very low dose of steroids while he begins a new drug which is used to thin the blood and in turn will hopefully eliminate any small blood clots and improve blood flow. This will be combined with a vitamin E pill. It was also decided that Trevor go to the Hamilton General Hospital and undergo hyperbaric oxygen treatment. Tomorrow we will meet with the doctors at the General and determine a schedule for this treatment. This most likely will start next week and last for approximately two weeks. Treatments will be daily and last anywhere from 2-2.5 hours. The main purpose of this treatment is to allow for additional oxygen into the tissue which in turn results in faster healing.
There is also one more drug that the doctors would like to proceed with which we will learn more about later this week however this particular drug has really only been used on adults. There has only been one other case in Hamilton (and a handful in Canada) where this drug has been administered to those under 18 years of age. The drug (like every other) comes with its side effects but the doctors feel that this is really something we should proceed with. We are awaiting more details on this drug as it is not covered by OHIP and before proceeding they just want to see if the hospital will possibly look after all or at least a portion of the costs associated with this drug.
As you can see there is a lot going on at the moment as doctors are trying to find a way to reduce the swelling causing these symptoms. The doctors have been very upfront with Trevor and have also told him to prepare himself that some of these symptoms may be permanent. They also are not ruling out the fact that the tumor may be growing again and in turn this may be the reason for some of these symptoms. We will have a clearer picture of that again once we go for another MRI scheduled for July 17th. This may however be moved up if there has still been no improvement over the next week or two.
With regards to some of the physical symptoms Trevor is currently experiencing: He has lost almost 100% of the use of his right hand. His right side is also very limited to where he cannot place his right arm over his head and he walks with quite a limp where the right leg is dragging at times. His double vision is now on a permanent basis. We have talked with his doctors but they would like to wait until at least October before they do anything drastic with his eyes. A good portion of the left side of his face is also numb. As a result Trevor is limited to what he can do. He was exempted from all of his exams and it appears as if he will be unable to work this summer.
But these are physical limitations. Trevor has not lost his sence of humor and although he has his moments (as do we all) he continues to be very upbeat and positive. Trevor sees the hand of the Lord at work in him and acknowledges that the Lord is providing him with the strength required in order to deal with this trial.
We go forward in the comfort that “in all things God works for the good of those who love Him, who have been called according to His purpose.” Romans 8: 28
We thank you all so much for your cards, thoughts, prayers, kind words etc. This means so much to us all. We have been truly blessed.
Praise the Lord!