David Burge Updates

David Burge updates his journey with leukemia

Posts Tagged ‘acute lymphoblastic leukemia

Dragon

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Dave was feeling much less bleak today :-). Today I bought on Trademe a cheap copy of Dragon Naturally Speaking (voice recognition software). Thanks Dad for the suggestion. Dave felt that using Dragon might make writing on the computer possible. It takes several months for Dragon to get to know a voice properly. He  felt this would be a good project when he begins to recover from the BMT later in the year.

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January 30, 2010 at 9:13 pm

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.

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

Timothy

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Dave is still home. Tomorrow he is in the Day Stay unit again for more IV chemo.

Timothy (4 years) fell off the couch backwards this morning and hit his head. About an hour later he started to feel unwell and then vomited a couple of times. He asked for a bowl first :-). I took him to the doctor. Tim has a very mild concussion and is supposed to be quiet today. During the next three weeks he is to avoid any activity that could lead to him hitting his head. Those instructions were easy to follow this morning, but after an afternoon nap he was feeling great and was struggling with the idea that it wasn’t OK to walk along the fence!

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January 14, 2010 at 8:10 pm

Home again

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Dave is home again. His temperature started to go up a little this evening. I had that sinking feeling that perhaps he would be returning again very shortly. However it has gone back to normal:-)

I am not sure if any real conclusion was reached about the headaches. Some of the medical staff thought that the headaches were caused by sinus problems, but the specialist did not. However the headaches have gone and there was nothing on the CAT scan to warrant further action.

Sam (15 years) started a “real” temporary job today. I say “real” because it wasn’t a paper-round, it was an 8 hour day job. Our advice to him was be polite, don’t listen to your ipod and turn off your cellphone unless you are on a break. He came home and said it was good advice; some of the other temporary workers had been told off for listening to ipods.

While I was folding pamphlets today, I listened on my ipod to a sermon by John Piper. I’m allowed to listen to my ipod;-) “When you have tasted the beauty of God and the approval of God in Christ, the addiction to human approval is broken. And you are free.”
John 8:36 So if the Son sets you free, you will be free indeed.

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January 13, 2010 at 12:28 am

From the comments on the blog

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David’s health is continuing to improve. He was back on chemo today. He took a couple of days break from the chemo schedule to make sure he had recovered from the fever. At the moment there is nothing to stop him returning home later in the week.

We met with the physiotherapist and the occupational therapist a couple of days ago. They have issued us with various bits of equipment – a walker etc – to make Dave’s life easier. He is experiencing muscle weakness which means he cannot walk unaided at the moment. We also briefly chatted about the bone marrow transplant. They were both really wonderful, positive people, full of great suggestions and they dealt with all the issues with a good sense of humour. Not many people have cerebral palsy and leukemia, making David a unique patient! I had a very helpful chat with the charge nurse on the ward (a suggestion from a friend) and I feel very happy that Dave’s unique needs can be catered for 🙂

I wanted to mention a couple of comments on the blog:

“Dear David,

I am a post bone marrow transplant patient. I am praying for you. Jesus is our healer. Our hope in Him is abundant.

“Now the God of hope fill you with all joy and peace in believing, that ye may abound in hope, through the power of the Holy Ghost.” Romans 15:13

David”

Thank you David Ting. I have linked to your blog on the sidebar. Often when I swallow I am reminded of his post on day 12 after the BMT.

———————

David and Tarnya,

I’m so sorry to hear of your sickness. We will be praying for your in Rhode Island, USA. I finally finished editing our show for Truth Matters. It is available for download at http://www.truthmattersradio.com or you can just click here [click on the link to listen or right click to save on your computer]. Shortly after our interview I entered grad school and did not have the time to finish editing. Sorry for the delay. After much editing we both sound like we know what we are talking about :)

grace & peace

~sean

Thank you to Sean who did a radio interview with David. He has done a great job of the edit. Thank you for all your hard work in putting this together. For those interested in Conditional Immortality, I think you will enjoy the radio interview. It is also lovely for us to have a record of Dave talking about this aspect of his faith journey. You can also find it at www.afterlife.co.nz.

Update

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When I visited Dave today he was having an animated conversation with someone else’s visitor. So I knew that he was on the mend from the infection. He had another headache last night but it was shorter and of lesser intensity. He had a good night’s sleep. He is hopeful of getting home on Tuesday or Wednesday.

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January 9, 2010 at 3:53 pm