David Burge Updates

David Burge updates his journey with leukemia

Posts Tagged ‘bone marrow transplant

YouTube Videos

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I found these excellent YouTube videos. I have embedded them.
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There is no Video 13
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Unfortunately the leukemia returned after the BMT

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February 2, 2010 at 11:08 pm

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

Managing a Critical Illness

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I have read a couple of books about BMT from the patient’s point of view. The most helpful has been 11th Hour Miracles! Surviving a Bone Marrow Transplant. She shares the emotional and physical toll that having a bone marrow transplant takes. I think it helps to know what to expect. Although each person’s illness and recovery will be different, her advice is sound and applies to anyone facing a critical illness.

One of her suggestions is to “imagine you’ve just been employed by the hospital to get your health back. Work with your doctors and nurses.

This advice indirectly acknowledges the level of effort; it is a full time job, the pay being, hopefully a return to health.

This advice means that it is helpful to be proactive in managing your treatment. Dave has several different doctors and even different departments of the hospital that he is dealing with. While ideally, all this information should be stored in one online file, this does not seem to be the case ** (see below) . Dave sometimes has to bring to the attention of a doctor, a piece of information  given to him by a different health professional. For example, on Friday he had to have another scan of his leg to check his veins because of increased pain. He brought to the attention of the doctor that recently his platelets have been very high. This was very important and also unexpected, given the chemo he is undergoing. The doctor found the information almost unbelievable and went away to check. Yes, it was so. Therefore, a different course of action was to be taken: an additional course of injections to bring the platelets down, to avoid the risk of clotting. Even when dealing with one doctor in regard to one situation, s/he may be dealing with hundreds of patients, hundreds of results. It can be helpful to give quick summary to remind the doctor what was last discussed and what has happened. This allows the limited time for each appointment to be used more productively.

This advice (to consider yourself employed) is a reminder to keep the relationship professional and polite! A natural friendship might develop, just like in a workplace, but if there is no natural affinity one still needs keep good communication.

I think this piece of advice is helpful for me too. In this post I mentioned a very helpful conversation I had with a physiotherapist, an occupational therapist and the charge nurse. If I was working for the hospital with the job description to get David well, I would not hesitate to speak to my co-workers. There is something very disempowering about the hospital system and any large bureaucracy for that matter.

**only a fortnight ago the pharmacist at the hospital was querying my change of address. It was correct on the Ward computer and the Day Stay computer, but not in the pharmacy. The pharmacist assured me that this was impossible because they were all on one system and I should update it with the Day Stay.

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January 18, 2010 at 12:03 am

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.

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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.

John 16:33

with 38 comments

Welcome to David’s blog, which serves as a record of our journey from November 2009 to July 2010. 


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 Click here for the ARCHIVES

John 16:33
“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

This last weekend David experienced sudden blurred vision. On Monday he was referred to the emergency eye clinic, then on to Middlemore, then Auckland hospital and after many tests, the doctors have found the cause: Dave has acute lymphoblastic leukemia. He has started chemotherapy.

So we find ourselves facing a very strong head wind of trouble. But we take heart. God is with us :-).

Thank you to all those are praying and giving us practical help.

Please pray for healing. Please pray for peace and courage for Tarnya (me) and our 8 children, for Dave’s parents Glenise and Jim, and David’s sister Vicki and her family.

Please pray for our church family, especially for the leadership.

I will use this blog, impersonal though it is, to write updates and to share our journey.

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Update #1 (April 2010)

Since November Dave has had chemotherapy, gone into remission, and a 10/10 matching donor has been found on the international registry. Dave was scheduled for a bone marrow transplant in late April 2010, however a bone marrow biopsy showed that he was no longer in remission so he is undergoing further chemotherapy to try and achieve a second remission. The bone marrow transplant has been postponed.

Update #2 (May 2010)

The further chemotherapy did not achieve the desired second remission, and the results of a bone marrow biopsy done afterwards made it clear that a transplant was not an option. The consultant thought that even if a bone marrow transplant had happened earlier in the first remission Dave would have relapsed anyway. Dave is taking a chemo drug to control the leukemia and this will give him extra precious months.

Update July 2010

David died on the 4th July. Photos and a video of his service are available . You can read what Dave believed about the afterlife here.

David wrote 2 books in those last months. I hope to have them published soon (links coming…)

David and I choose not to allow leukemia to so cloud our lives that we did not receive each day as a blessing to be shared. Psalm 90:12. That is my prayer for you, that in all circumstances you can still find joy.

Love Tarnya

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November 10, 2009 at 6:43 am