David Burge Updates

David Burge updates his journey with leukemia

Sleep

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Dave is now sleeping well at night. His nose is healing well. He has been encouraged by many cards and email greetings, thank you. He is feeling very tired but is mostly comfortable. His pain is controlled well by a morphine pump.

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July 3, 2010 at 9:02 am

Posted in from Tarnya

Down, Down and Up

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It’s a rollercoaster ride, but not one anybody would pay to go on.

Short Version

Dave had a serious nose bleed due to inflammation in his nose and low platelets. He has had 4 days of being very seriously ill. However due to good care and a couple of “chance meetings” including with his consultant, Dave is now much better. The consultant suggested that the nose inflammation might be viral and prescribed large doses of antiviral medication. He also encouraged Dave that his blasts had come way down instead of continuing to climb.

Long Version (Warning: Not for the Faint Hearted)

It started with a small bruise on the end of Dave’s nose on Friday evening. By 1am on Monday we were in the emergency department of Auckland Hospital with Dave’s nose pouring blood, and blood running down his throat. Large clots of blood were dropping out of his nose, filling his nasal cavity and hanging into his throat making breathing difficult. We went into hospital. The nurse at the desk of the Emergency department called three times for an orderly to come and take Dave through to the assessment ward. This was first time since Dave was diagnosed Tarnya was really sobbing. She was not sorry for herself but for Dave. This has been a horrible disease and so far this was certainly the lowest point in our journey. The nurse gave up on the orderly and took the bed down the corridor herself with Tarnya’s help.

Tarnya spoke to the doctor saying: If there is nothing you can do for Dave, would you make him comfortable? He hasn’t been able to sleep for a couple of nights. He is in pain, struggling with each breath, blood running down the back of his throat making him want to vomit, clots hanging in his throat making breathing difficult and seeing your life blood pouring out of your nose is not a great experience.

There was plenty to be done however: Dave had 3 bags of blood; 3 bags of platelets and had his nose packed with self dissolving gauze etc by an Ear Nose and Throat Specialist (ENT). The ENT Specialist kept apologising for the pain she was causing. Dave only said that he wanted to stop and hug her. He was so pleased with the work she was doing. His throat was still very sore but even by what she had already done the pain was greatly lessened and Dave could see hope that it would get even better in the future. He was given extra morphine and other medication to make him comfortable. After all that treatment he was able to sleep. He had a fever.

Tarnya was given a referral to a palliative care doctor so that we could arrange things so that Dave could go home. The palliative doctor was wonderful and with help from hospice we have managed to get a hospital bed, syringe pain pump etc, organised so Dave could go home. Tarnya needed to pick up some medication from a local pharmacy before they shut. She was unsure whether she could get Dave in the car so she left Dave at about 4 pm (in Auckland hospital) with an ambulance booked to bring him home at 5 pm. She drove home very carefully since she had not slept at all the night before and only briefly the night before that. The ambulance was so late that at 7:30pm Tarnya started the drive back to Auckland to collect Dave. However before she got onto the motorway the ambulance did at last arrive.

There were some good things that came out of that delay: Dave’s consultant “happened” to be walking past and noticed Dave. They had a chat. The consultant noted that Dave was unlikely to win a beauty contest at this stage. If you could have seen Dave’s swollen face at this stage you would have doubtless agreed (Even before this time my chances were somewhere between zero and nil – Dave). The consultant recognised that the problem with my nose was viral and so added or increased another very important medication to Dave’s list of pills (Sometimes unusual diseases show up with leukemia because of lower immunity. We have noticed a significant improvement with the extra anti-viral tablets which Dave took through that night).   The Dr had some other good news to share too – Dave’s blast cells were down- that was encouragement to Dave to endure a blocked nose, considerable pain and great difficulty with getting any sleep over the next 2 or three days. Dave was dizzy, and frequently doing “the long blink.” We were told that when the body gets oxygen deprived there is something in the brain that should tell a person to mouth breath. So Dave would nod off, not breathe, then suddenly breathe through his mouth which would awaken him. When totally exhausted this sudden deep breath would not wake him and he would sleep for less than an hour mouth breathing. The pain medication also makes you feel disconnected and so he would feel he was drifting into unconsciousness. He was unable to eat anything solid. Swallowing was hard work but it was important to swallow those pills.

Tarnya has been wonderful. It takes nearly all her time to look after Dave. At night, when Dave wakes, she wakes. During the day she has help from the children. The emotional support is more important to Dave than the physical support. We couldn’t begin to describe what it is like, the pain, physical and emotional, is at times overwhelming, but we are at the same time closer to God and to each other than we have ever been.

Today, Friday Dave and Tarnya are feeling tired but rejoicing that things are better than they were.

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July 2, 2010 at 10:55 am

Posted in Update

Update

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We saw the consultant yesterday. The chemo is no longer working. He estimates that Dave has about 2 weeks left.

We have been blessed by many comments on the blog; by the assurance of your prayers and thoughts; and by some very thoughtful and practical gifts.  Thank you.

Thank you to those who have written beautiful letters of  tribute. Dave has appreciated these.

Only visits from immediate family from now on please.

If you have anything that you still want to say to Dave please pop it in a card, comment on the blog, or send a private email. I will be reading all Dave’s  mail to him.

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June 25, 2010 at 7:56 am

Medical Update

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Dave went into the Day Stay for a blood transfusion on Tuesday. He rang me to tell me his blasts (cancer cells) are very high, up from 68 (Monday) to 109 . They have given him platelets as well as the blood transfusion because his gums and nose are bleeding a little.

Today the blasts (cancer cells) have climbed to 160 even with an increase in his chemo tablets. He is taking morphine every 2 hours during the day. He tried to write this morning but was not able. Hospice rang today and someone is coming in the morning. We have an appointment with the consultant in the afternoon.

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June 23, 2010 at 5:25 pm

Seasoned with Grace

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This Sunday our pastor preached on Galations 2:15-21, you can read the sermon here

“I live by faith in the Son of God, who loved me and gave himself for me”

That perspective changes how I view suffering. Both Dave and I see our lives as seasoned by grace. Little things along life’s journey that remind us of God’s love for us. We find His mercy ever present. But it might be easy to miss. It is by faith that we see these mercies as coming from him:

On Saturday morning I could not remember the correct dose of chemotherapy tablets that the consultant had told me over the phone. I had to ring the hospital, something I did not want to do. The consultant is a very busy person with a heavy caseload. He had rung at 7:30pm on Friday, most likely several hours after he was off duty. I spoke to the nurse and asked her to pass on my apologies for not taking careful note. The notes, you see had not been typed up on the computer, so the consultant had to be disturbed. I received the reply and an encouragement, that it was OK, I was doing fine in a difficult situation. That felt like God’s grace.

On Saturday night when my I could feel my heart begin to fall toward despair, the Holy Spirit whispers: ” I will never leave you nor forsake you”. And so I take courage.

When I rang the ward on Saturday night to discuss pain management, the doctor who had seen Dave earlier in the week was there, and he was happy to make decisions without us coming into the hospital. That felt like God’s grace.

And this morning when Dave awoke, alive and OK. It felt like God’s grace. Some more time.

I used to be an atheist. I don’t think there is anything I could say to myself back then to prove God’s existence, see this here, that is God at work. After all, back then, I looked at the whole world and saw it as an accident. Now I see intelligent design everywhere. The framework in which we view the world effects how we put all the information together. It affects what we tell ourselves about what is happening or has happened in our lives.

I was reading a book looking  at the story/myth of  the rescue of a Jewish boy from a  concentration camp by some German  communist prisoners. It was later made into a movie. (A rabbit trail from reading The Boy in the Striped Pajamas to Jonathan).  With more time this story changed completely. After the unification of Germany, more information was brought to light so that now instead of glorification of the communist prisoners the story condemns them.

Is there more information to come to light that will change what seems a disaster for Dave into something good? If one believes in a physical resurrection at the end of time, where this life is only the introduction chapter to something better, if one believes the apostle Paul, who wrote in  2 Corinthians 4:17 “For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all” then yes, his story will be transformed.

And so “I live by faith in the Son of God, who loved me and gave himself for me”  and if I am wrong, I am to be pitied, for like the East Germans I believe a lie.

1 Corinthians 15: 17f

” And if Christ has not been raised, your faith is futile; you are still in your sins. Then those also who have fallen asleep in Christ are lost. If only for this life we have hope in Christ, we are to be pitied more than all men.”

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June 20, 2010 at 10:11 pm

Posted in from Tarnya

A bad night but a good morning

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Yesterday evening Dave was very ill. He had a high temperature and a very painful headache, probably caused by high blast/cancer cells in his blood. I rang the hospital to find out the dose of morphine I could give him to keep him comfortable. I spoke to a wonderful nurse. The thing most worrying Dave was not that he was dying but that he might have to go into hospital to be assessed for pain management. However the doctor on duty was one who had seen Dave earlier in the week and was happy to manage things over the phone. Dave took morphine 2 hourly all evening. This morning he is awake and feeling tired but is pain free :-).

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June 20, 2010 at 9:13 am

Posted in from Tarnya

Phone Call

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The consultant rang at 7:30pm last night (Friday), not something he usually does. He asked me about Dave’s quality of life. I told him apart from those couple of days with the infection where Dave was coughing all night and blacking out etc that it has been good. He reiterated that it is getting increasing difficult to keep Dave stable.  His instructions were that Dave was to  start the chemotherapy tablets again that night. He will probably need to see Dave early next week.

Later that evening Dave had a terrible headache (probably a side effect of high blasts) and took some morphine for this. He managed to sleep all night but is not particularly well today. But his head is feeling better and he is able still to write 🙂

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June 19, 2010 at 12:21 pm