David Burge Updates

David Burge updates his journey with leukemia

Posts Tagged ‘vincristine

First week of school for Rachel. Hand Troubles for Dave.

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Rachel

Rachel finished her first week of school.

It has been a learning curve for all of us. She can see advantages to home education that she didn’t before. We can also see the advantages to “school”. She is happy with her decision and so are we.

Dave had  another interesting time at the Day Stay today. Basically his treatment was canceled today because of the 14 day series of injections he is on for the prevention of the clot in his leg. Fortunately the topic of the injections came up in conversation when it was mentioned by the nurse that one of the levels in his blood was high. Dave pointed that it might be due to the injections. The doctor then said he cannot have a lumbar puncture when on these injections (somehow the connection was not made earlier in the week when the treatment plan was made). We understand that doctors are human: we blame the system because seeing different doctors all the time does not help them or us. The doctor suggested that perhaps they could admit Dave to the hospital over the weekend, an idea that did not appeal at all. So he went home with the possibility that he could have the treatment over the weekend. Later we had a ring from the nurse to say that hospital protocol did not allow this for safety reasons. So he will just have the scheduled treatment on Tuesday and carry on from there.

Dave was very discouraged with his hands today (the wasted trip to Auckland not really helping). His energy levels are better so he tried to type. Basically he can’t. The pain levels after only a few words are high, his fingers have no strength and they will not do as they are told. His arms/hands ache all the time. He has tingling/numbness in his fingers. He can barely sign his name, never mind writing an article. This is a major discouragement. He can no longer drive and now he can’t write. He wonders what he will do even if he survives the BMT. Perhaps having physiotherapy would help: one article on demyelination said  “physiotherapy may improve muscle strength, function and mobility, and minimize the shrinkage of muscles and tendons and distortions of the joints.” Next week I will ask if this is an option. Perhaps even a consultation with a physio would help. She could guide us regarding what exercises could be done at home to prevent further loss of muscle strength.

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Update and the Minimum Wage

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Dave is feeling well today. He is good spirits. He had the energy for reading to the smaller children this evening. He enjoyed visits from several people yesterday. He is up and about the house. Last week he was in bed most of the day.

The chief consultant reviewed all the tests. He has changed Dave’s chemo regime because they think the Vincristine may be causing some of the nerve problems (he has some demyelination of his nerves). This means he is no longer able to put on his own socks. He has no strength in his fingers for tasks that require fine motor control like opening cans and writing. He is not able to hold a cup normally but can manage if he holds the whole cup as opposed to just the handle. He has some pain in his hands. His strength in his legs is returning so today he made an effort not to lean too heavily on the walker and his hands were less sore. They are hopeful that these changes are not permanent but they may be.

Today Rachel went to school and back by train. The small children and I joined her for the journey there; Timothy (4) thought that his train trip was very exciting.

Noah and Jonny are doing a good job of delivering all the pamphlets.

Sam was pleased with his first full fortnight’s pay and he was offered another fortnight’s work. If he gets a permanent full time position, he plans to continue with some study in the evenings and weekends. When he turns 16 he can enrol as an adult learner with the correspondence school and will get some NCEA points part-time. I rang the Ministry of Education to clarify our legal position. He has an exemption from attending a registered school (to homeschool) so we do not need to apply an early release (compulsory education is 6-16 years in New Zealand). She advised me that work experience can be part of an education. At the moment he is still working in his holiday time. Once his holiday time is used up, I will add in some book work. Sam really enjoys his work and will happily take any extra hours they give him. Unemployment here is on the rise: “New Zealand’s unemployment rate is 6.5 per cent and figures released last week showed the number of people on the unemployment benefit rose 13 per cent last month to 66,328.” A job is a precious thing. Youth unemployment is much higher at about 20%.

As an aside, today the Government raised the minimum wage to $12.75 (from $12.50). That will only make the first rung of the ladder higher (http://mises.org/daily/3618). Better to be on a low rung with the hope of climbing that never getting on the ladder. A job can be about more than money: it is about the dignity of your labour being worth something.

A job may be an issue of survival (not in New Zealand): the following articles on whether to ban child labour may be of interest findarticles.com and mises.org/daily/2858.

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January 27, 2010 at 10:04 pm