This afternoon my darling boy passed away. He was cared for at the end by the fabulous team at the Nurse Maude Hospice.
Our thanks to all of you for caring enough to send your love and best wishes.
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Anthony is settled. His room is a really good size and he has a small courtyard just outside his door. There's a whole garden outside the rooms in his wing. The nursing staff I've met are lovely. I think a good night's rest will definitely be on the cards for him today. It's been a long day
I have been remiss in adding an update to this page over the last little while. Anthony has been holding his own for some time. His attitude was bright although he was in pain. Unfortunately his masses have progressed. There are quite a vew visible ones around his joints and he is now in much more pain.
Nurse Maude has been great visiting each week. We have changed his nutrition plan because he cannot handle regular food very well. He now has a recliner chair that helps him stand and we have raised his bed and put padding on it so he can rest better.
The last two weeks have not been great. He is in a lot of pain and we've changed his medication. He is very pale and even simple tasks tire him easily. Danielle and I are tag-teaming his care but there are times when he simply wants some space without us. His sense of humour is still wicked
Today Anthony and I started his new exercise routine. We went to Jellie Park and Anthony Edwards tried aqua jogging. His buoyancy was a real problem to begin with so we used a belt to help hold him up. Anthony jokes he's invented a new stroke called the "Lame Frog" Afterwards we sat in the spa for ten minutes before he got really fatigued.
Upshot - he had a fantastic time and is sleeping it off now
Last Friday Anthony had a CT scan to assess how the planned immunotherapy infusions have been working for him so far.
The news was NOT what we wanted to hear. THE DRUG IS NOT WORKING and THERE IS NOTHING ACTIVELY THAT CAN BE DONE!!
My heart hit my boots and I couldn't believe that after trying everything to get on the trials, then the funding coming through from the government, the drug didn't work for him.
Anthony is far more collected regarding the news. I'm not there yet. Anthony is keeping a positive attitude, which is amazing. My job is to help him one day at a time.
Although he currently feels physically and mentally strong, we have no idea what to do next except to focus on each new day. Future medical costs will come - no doubt and it's possible that he will need other things.
Goalsetting tomorrow
So far we have been very fortunate that Anthony hasn't had significant side effects from the treatment.
That was until yesterday. Although he is normally quite tough he complained that he was experiencing a lot of knee pain. Massage and painkillers were not providing relief and as the day wore on it got worse - especially when he tried to stand up and walk. So it was off to the doctor yesterday. Different medication enabled him to sleep last night but he woke this morning uncomfortable.
Musculoskeletal pain is a possible side effect of this treat mentioned so we're into pain management mode again.
We have clinic at the hospital tomorrow so are monitoring the pain levels today
Hi folks - the treatments continue but it is still unknown whether the infusions are having much of an effect.
Anthony's appetite is still basically non-existent. Occasionally he will feel hungry and I've learned that whatever he wants to eat is GOOD. I would be happier if he was eating a healthy balanced diet but if it stays inside him it's great.
So far he's lost over 52 kgs and no longer has hips to hang his trousers off. Thank God for belts and trousers with drawstrings.
His balance is better though he sometimes has to concentrate really hard.
Infusion days are tiring but we figure each one we go to is another step forward. This week Anthony has to have a CT scan of his chest and abdomen. Hopefully this will give us good news.
Further to the testing being done on 2 August:
We now know why Anthony was struggling with his breathing. His left lung is obstructed by tumours and has collapsed. The right lung and its intake is being affected by inflammation. Apparently it's not unusual for patients receiving immunotherapy to experience tumour "flaring" where the tumours expand and then shrink - so we've got our fingers crossed that this is what's happening.
Good news though is that the Doctors are letting us continue with the immunotherapy infusion due tomorrow. In order to attempt to help the right lung Anthony is in for a course of radiation therapy starting on Tuesday. We hope this will reduce the blockages in the right lung and improve his ability to breathe. They tell me that if the new medication gets rid of the tumours it is possible that his lungs may reinstate on its own, but we'll cross that bridge as we get to it.
Anthony was missing home and our pets especially our dog. Thanks Christchurch Hospital - ward 26 for allowing us to bring our dog in for a cuddle.
At Oncology Day Unit with Anthony - hes been feeling more breathless and more fatigued than usual so we're waiting for a CT scan and some blood tests to be done. I love the way he can keep positive and smiling even when he feels crappy.
Thanks to the nursing staff for all their help - especially Jo, Jen and Candy.
Anthony Edwards has his 2nd cancer treatment infusion today. The first 3 take 2+ hours. Oncology says it's more than likely first real indications won't be apparent for 6 weeks (after the third one).
So far the blood tests are ok. He's still nauseated and being sick. His energy levels are low as he can't keep much "fuel" in. His biggest issue is his breathing due to the obstacles in his lungs and his muscles get sore so I'm massaging them quite a lot
I love the way he stays so positive though even when he's finding the day challenging. Still early days of treatment so trying to keep motivated and chin up.
WOW!!!!! I was crossing my fingers and EVERYTHING else when I posted this page up. The response that has occurred over the last 24hrs has blown me away - Thank you so much for your interest. Your support is amazing.
Anthony has now begun a new treatment. He feels nausea from time to time, fatigued most of the time, he is still coughing deeply and a lot and is in some pain most of the time. This treatment is new and every day is a challenge and an opportunity. Thank you for your ongoing assistance.
Anthony is still keeping a positive attitude and is looking forward to his hospital day next week.
