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Hope is not found in our inner strength, ability to endure, faithfulness in the face of adversity, or even our faith. Hope is found in Jesus alone. His conquering of death means that we have new life, the new kingdom. It is Jesus who grants us faith, endurance, patience, forbearance, strength, etc. They are all things that we cultivate, but ultimately their source is Jesus. As we look at this final dark night before Jesus’ death, we look at the one who brings us hope through his sacrificial death for us. As dark nights come our way we don’t look inwardly for strength, but to Jesus, who is our strength, refuge and hope.
For myself and some of you perhaps details of Dans last days may help for final closure. Dan quite suddenly pasted away on Wednesday 4th of January 2017. He was is full remission from Luekaemia. The Stem Cell transplant had been a success, however he still suffered some graft verses host affecting his gut, weight loss, muscle wasting and steroid induced diabetes.
On Christmas day he awoke with a fever and was then on in hospital. He got day leave and was able to spend an enjoyable Christmas day in the unit with our immediate family and his parents Suzanne and Lawrie.
His fever continued for a week and saw New Years Eve in hospital. The hospital did investigations and were unsure what was causing the fever. Finally (what seemed like forever) an ultrasound showed spots on his liver. But to confirm they needed to do a liver biopsy. On Sunday morning 2nd January they did this. But by that evening the biopsy site wound would not stop bleeding.
From the liver biopsy some DNA samples were sent to Sydney after 3 days it was confirmed a liver virus called adenovirus (apparently we all catch as a child the common flu but it lays dormant and the immunosuppressants caused it to flare up).
Sunday night Dan went into ICU and after difficulty breathing was put on a ventilator and kept sedated heavily and not conscious again. So for 3 days he fought in ICU for his life. He had complicated bleeding which they couldn’t really find the source and his blood just wouldn’t clot which caused more complications. He was given mega bags like over 30 bags a day of blood to keep his blood pressure up and the most expensive $7000 blood clotting drug x3-4 but even this wouldn’t work, his body started shutting down kidneys not functioning and a blood clot in his leg too dangerous to operate was causing his leg to starve and die.
They finally got the antidote for the viral infection (bit too late) which was cytotoxic and needed his kidneys functioning to clear its harmful biproducts. Too much went wrong for Dan to get through the infection on top of his bleeding problems and kidneys malfunctioning. They tried a dialysis machine a few times but it wasn’t working as it dropped Dans blood pressure too low.
Josh Allen was able to read the bible and pray with Dan whilst he was in ICU and Christian friends prayed and ministered to our family. The kids all got to see and talk to Dan for the 3 days he was in ICU. Dans Mum and Dad were living across the road from the hospital and got to see him. Rebekah Dans sister was there for most of the days Dan was in ICU. In the final hours we were able to play Christian music, read the bible to and on Dans final passing able to read Psalm 23 The Lord is My Shepherd as he went to be with his Heavenly Father.
Written by Simone Godde
My apologies for how long it’s been since my last post. Things have been steadily improving since then. I went home for the weekend and slotted back into my old roles and responsibilities reasonably well. Though I was physically limited it didn’t seem too hard to be helpful around the house, especially with looking after the kids. Every now and again I accidentally found one of those physical limitations, though. We were playing cricket in the back yard and I was trying to take it relatively easy. One of the kids threw the ball to me but it went wide and I instinctively stepped to the side to catch it, but my leg muscles were not strong enough to support my weight and I went down like a sack of spuds. No injuries, but very embarrassing and a reminder that rehab is a long and slow process.
I got caught outside the unit block in Melbourne the other day with a roller door coming down and threatening to lock me out, so instinctively I tried to run. I forgot however that I can’t run and so fell over immediately. Needless to say I didn’t make it back in time and had to buzz my way back into the building. Thankfully there weren’t too many witnesses. On the other hand I feel myself getting stronger in some of the small things. It’s easier to stand up now from a sitting position. I can walk faster and further than I could before. My blood counts have stabilised above the levels where I need transfusions. These are all good signs and represent progress. The doctors tell me I’ll go home in late January or early February, but I’ve given up putting much stock in doctor forecasts, as none of them have turned out to be accurate so far. Instead I’ll keep visiting home and wait patiently for the day when the doctor sends me home permanently, whatever day that may be.
It’s amazing how far God has taken me on this cancer journey, and he’s been with me all the way. I wonder if you had to walk a similar path who would you rely on? If you don’t know Jesus let me encourage you to take another look. You might start with a website like this one: http://christianity.net.au/. Or you might start just by picking up a Bible and beginning with one of the biographies of Jesus, like the Gospel of Mark. It’s a short read (about an hour) and will give you all the important details of Jesus life as well as the central message of his teaching.
The full results of the bone marrow biopsy are now in and there is no detectable Leukemia in the sample. This means that the transplant, as far as we can detect, has been a success. My new immune system is fighting the Leukemia and winning. This is great news. In other news, after resetting my steroids back to a higher level, they’re very slowly being lowered again. So far, so good. I’ve discovered melatonin and am having the best sleep now that I’ve had while taking steroids. It’s not perfect, but it’s more than I was getting, praise God. I still need the occasional transfusion (red blood cells or platelets), but they’re talking about getting me to go home to Sale one weekend. I’m looking forward to that. Thank God for the good results and for sleep and please pray for growing strength and bone marrow.
The day 100 weekend has been a little eventful and something of a backward step. Last week my platelets were low and I started to bleed. This led to a couple of days back in hospital until I could get some platelets and the bleeding stopped. Then this weekend my GVH (graft vs. host disease) flared up again – i.e. diarrhea. It seems my steroids had been reduced too far. A quick increase in steroids fixed the GVH. All this added up to further weight loss, which was disappointing. But, I also completed the 100 day tests. They included a bone marrow biopsy, blood test, lung test, bone density test and visit to the dentist. They took 14 vials of blood out of me in the blood test! Early indications from the bone marrow biopsy are all positive, praise God. So after an eventful week it’s been hard to see where the progress is. It isn’t in weight gain, it’s no longer in getting the steroids down, but the progress that matters is in my bone marrow. The stem cells need to multiply and mature and that takes time. Apparently cord transplants like I had are the slowest to mature, so I’ll be here well past day 100. So we continue to take each day as it comes, trusting God with the big picture, knowing that all his plans are good. Please continue to pray for some weight gain and good sleep.
Day 100 is just around the corner. I’m not sure exactly what that will mean. I certainly won’t be going home back to Sale in my current state. That’s many days away. I do know it means another bone marrow biopsy and a day of tests. Not much else has changed since my last post. The steroids continue to be reduced. One piece of good news is that I put on some weight: almost 1kg. Praise God! Thank you for those who have been praying. Please continue to pray that I continue to gain weight and strength and good sleep is always high up on my prayer list.
I’ve managed to be getting more sleep lately, but with the help of a lot of sleeping tablets. This leaves me groggy in the morning and I have to be careful of my balance and footing. The bonus is, though, I’m getting some sleep. My steroids have been reduced gradually by half over the last fortnight, but I’m yet to see any change, since the dosage is still quite high. It’s been great to have Dad back in the unit and I finally feel like I’m getting used to living here. We had great news from the last bone marrow biopsy. There was no detectable Leukemia in the biopsy, even with the most sensitive tests. This means my new immune system is fighting the Leukemia in my body and God-willing will do so for the rest of my life. Praise God for that! One concern is, though, I’m eating as much as I can pretty much possibly eat, but I’m still losing weight. Please pray that that situation reverses and I start putting on weight.
I’m enjoying being in the unit. Mum is doing a great job of looking after me and it’s great to be out of hospital. I’m still on quite a high dose of steroids which means I have a lot of trouble sleeping and constantly feel wired. The doctor said I’m trying to do too much exercise, and to consider this time more like a holiday, so I’m trying to relax more and somehow chill while at the same time feeling constantly wired. It’s a weird mix. Every second day we go across to Peter Mac hospital to see the doctor. It feels like a stressful day but in reality it’s not that hard. It does require a lot of waiting, though. Please pray that together with the doctors we’ll work out how to get better sleep.
In fact I got out yesterday. This is a picture of me with Mel the nurse, who was the last nurse rostered on to look after me. All the nurses at RMH have been terrific along with the doctors and I can’t thank them enough and thank God for them and their loving and expert care.
I’m now living out of a unit supplied by fightcancer.org.au, which is again another incredibly generous provision for which I praise God for people’s generosity toward cancer. It’s a time of adjustment now, after a mammoth 78 straight days in hospital, just getting my head around a new environment. I’m now an outpatient of Peter Mac hospital and have to go in three times a week for appointments. Today was the first day and everything seemed to go well. Lot’s of waiting but everyone’s very helpful. Thank you for all your prayers and support and please continue to pray for me to transition well to living in the unit and the long process of recovery. If you could particularly pray for good sleep, that would be a real blessing.
Shocked when I first heard the word, but the high steroid use has meant I now need insulin 4 times a day to control blood sugar levels. When I discharge I will probably still be on steroids and will need some kind of insulin, whether needles or tablets. In good time hopefully I can come off the steroids and God-willing off the insulin. There is a chance I may be a diabetic for life. Please pray this isn’t the case. As with all news it hits hard at first but then you get used to it. It seems for now an inconvenience that the nurses handle and I’ll take it day by day after that. My diarrhea is reducing and so they are slowly reducing the steroids. It’s slow going, but I am managing to get out of the hospital for an hour or two each day to go to the unit, which has been nice. I was reminded this morning from John’s Gospel that through the Spirit the Father and Son come and make their home in us. That’s a profound, marvelous and comforting truth. The Trinity who pre-exist time, space, and matter, are living in me, undeserving, weak, flawed sinner that I am. What an amazing love that God would do that!
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