We all had a wonderful day last Sunday. Philip's mum came down with his sister and her husband and Bill and Mare and the most important of all - Nathan!
It was so great to have him with us, he had a great time playing with Uncle Bill and talking with everyone.
The even better news is I spoke with Michelle about Christmas day - we were going to have lunch at Bill and Mares - and she said she wanted Nathan in the morning and lunch to spend with her family but we could have him for dinner at night and he could stay the night and come with us all to Newcastle to see Philip's parents on boxing day. I am so pleased she has done that for us all, Philip's mum is very excited too.
Bill is almost as excited as us because he went a little crazy with Christmas presents for Nathan and wants to play with them with him. Ben, Philip and I will take our presents over instead of opening them in the morning so it will be a great day.
My sister and her husband are coming over for Christmas on the Saturday beforehand and hopefully Ben can get Nathan for the weekend so he can open his presents from them.
I am so pleased that things are working out - it must be very hard on Nathan and confusing for him. It is bad enough for adults in a breakup but even worse for kiddies. Hopefully now that he has made the move and come over and settle in okay there will be no problems in the future.
Radiotherapy
Philip's ear is very sore but doesn't seem to be weeping as much. The community nurse called in today and she thought the same thing.
I have been doping Philip up but he keeps saying he will put up with the pain which is so silly. His drs have told him that there is absolutely no reason for him to put up with pain so I have been giving him his usual daily meds and throwing in the pain killers so he doesn't notice.
Friday, November 30, 2007
Thursday, November 29, 2007
Radiotherapy Update
Well as well as taking Philip to the Drs I had to take my computer and have been off the air for over a week. Hopefully back to normal now.
So an update - took Philip to the radiotherapist last Thursday and ended up seeing about 5 different Drs as they all had different opinions. The final outcome is to give Philip one dose of radiotherapy. The area to be radiated will actually slightly overlap where he had previous radiation and that was the big sticking point along with the fact that usual cartilage is not radiated. They (the Drs ) figure if they give him one dose it might contain the cancer to that area and dry it up a little. It is about 1.5cm wide and 3 long and also now breaking out on the top of the ear. Anyway after being there for about 4 hours and being poke and prodded he went back today to have the radiation.
One of the Drs was a skin specialist and he had the final say - he actually thought that the cancer may be related to the former radiation because of where it is - it is actual on the back of the ear and so unlikely to be from sun damage because the sun never shines there (lol). He also admitted that the pain that Philip is getting from it is going to get a lot worse which was not good news at all.
So now we are back and it is all over. Philip had some drugs for pain relief (Endone) while they did the radiotherapy because they had to fold the ear forward and tap it to the side of his face. He was quite chirpy when it was over and for the next couple of hours but now is feeling very sore and sorry for himself. His neck is very sore also but I think that is from the way he had to hold his head while they gave him the radiation and got him prepared. Just gave him some more Endone and hopefully he has a snooze.
Now we have to wait and see for a few weeks to see if the radiation did anything.
So an update - took Philip to the radiotherapist last Thursday and ended up seeing about 5 different Drs as they all had different opinions. The final outcome is to give Philip one dose of radiotherapy. The area to be radiated will actually slightly overlap where he had previous radiation and that was the big sticking point along with the fact that usual cartilage is not radiated. They (the Drs ) figure if they give him one dose it might contain the cancer to that area and dry it up a little. It is about 1.5cm wide and 3 long and also now breaking out on the top of the ear. Anyway after being there for about 4 hours and being poke and prodded he went back today to have the radiation.
One of the Drs was a skin specialist and he had the final say - he actually thought that the cancer may be related to the former radiation because of where it is - it is actual on the back of the ear and so unlikely to be from sun damage because the sun never shines there (lol). He also admitted that the pain that Philip is getting from it is going to get a lot worse which was not good news at all.
So now we are back and it is all over. Philip had some drugs for pain relief (Endone) while they did the radiotherapy because they had to fold the ear forward and tap it to the side of his face. He was quite chirpy when it was over and for the next couple of hours but now is feeling very sore and sorry for himself. His neck is very sore also but I think that is from the way he had to hold his head while they gave him the radiation and got him prepared. Just gave him some more Endone and hopefully he has a snooze.
Now we have to wait and see for a few weeks to see if the radiation did anything.
Tuesday, November 13, 2007
Results
Well we are back from the Doctors and I have only one word to say --- sh#t!
It is a Basal Cell Carcinoma. Good news is it doesn't send out secondaries the bad news - usual treatment radical surgery and radiotherapy. Our Dr spoke with all of Philips Drs and the general concensus is no surgery but talk with the radiotherapist to see if that (radiotherapy) is viable.
We have an appoinment for Thursday week (22) so we will know a bit more then. All the Drs are looking for is containment and palliative treatment.
It is a Basal Cell Carcinoma. Good news is it doesn't send out secondaries the bad news - usual treatment radical surgery and radiotherapy. Our Dr spoke with all of Philips Drs and the general concensus is no surgery but talk with the radiotherapist to see if that (radiotherapy) is viable.
We have an appoinment for Thursday week (22) so we will know a bit more then. All the Drs are looking for is containment and palliative treatment.
Monday, November 12, 2007
Result Day Tomorrow
Well tomorrow is the big day - we get Philip's results for the biopsy on his ear and his stitch out. I am feeling optimistic because the results were supposed to be in last Friday and we didn't get a call from our Doc to say there was a problem (he usually rings if there is).
I haven't discussed the possibility that the result may be cancer to Philip - we will worry about that if it happens. No need for both of us to worry.
Michelle, Ben's ex fiancee, came over yesterday to drop something off for Ben and Nathan was in the car with her. Ben asked him if he wanted to come inside and see us but he wouldn't so I went out and got into the car with him. We had a chat about preschool and movies he had seen - I didn't pressure him about anything. I asked him if he would like to come and visit soon and he said yes but whether he does or not I don't know.
After about 10 mins I could see Michelle wanted to go and I was starting to get a little teary but I didn't want Nathan to know so I gave him a big kiss and cuddle and told him I loved him and hoped to see him soon. Then I came inside and had a big cry.
Ben wants to see him also and spend some time with him but he is trying hard not to push him, It is so sad not to be able to play together like we use to - it breaks my heart - Ben is really upset about it but we are putting Nathan first. As I said to Ben none of us matter it is Nathan who is important - we are adults and can cope with our upsets but he is only a little boy and this must be very confusing for him.
I bought a book for him and thought I would post it to him - I know he likes to get things in the mail; thought I would put a stamped addressed envelope in it and he could send me a letter back.
A big thank you to everyone who left comments for me - it is wonderful to know that I have you all 'holding' my hand ...... lol
I haven't discussed the possibility that the result may be cancer to Philip - we will worry about that if it happens. No need for both of us to worry.
Michelle, Ben's ex fiancee, came over yesterday to drop something off for Ben and Nathan was in the car with her. Ben asked him if he wanted to come inside and see us but he wouldn't so I went out and got into the car with him. We had a chat about preschool and movies he had seen - I didn't pressure him about anything. I asked him if he would like to come and visit soon and he said yes but whether he does or not I don't know.
After about 10 mins I could see Michelle wanted to go and I was starting to get a little teary but I didn't want Nathan to know so I gave him a big kiss and cuddle and told him I loved him and hoped to see him soon. Then I came inside and had a big cry.Ben wants to see him also and spend some time with him but he is trying hard not to push him, It is so sad not to be able to play together like we use to - it breaks my heart - Ben is really upset about it but we are putting Nathan first. As I said to Ben none of us matter it is Nathan who is important - we are adults and can cope with our upsets but he is only a little boy and this must be very confusing for him.
I bought a book for him and thought I would post it to him - I know he likes to get things in the mail; thought I would put a stamped addressed envelope in it and he could send me a letter back.
A big thank you to everyone who left comments for me - it is wonderful to know that I have you all 'holding' my hand ...... lol
Friday, November 02, 2007
Sad and Worrying Times
I am really down at the moment - as you know Ben and Michelle have broken up and sadly we have not been able to see Nathan since then breakup. Ben tries to get him each weekend but each time he asks him Nathan says he doesn't want to come. It is really sad because before all this happened he always wanted to come over and often didn't want to go home. I feel like crying all the time that we no longer can see him. He is going to miss out on so much by not being able to see his Dad, Philip and me and his Aunty Mare and Uncle Bill not to mention the fact that we will miss so much too! I miss our long talks, early morning cuddles in bed, playing games together and 
his funny laugh.
Ben rang me and we both had a little cry together on the phone when he told me that Nathan said he didn't want to come and see us at all even for just a few hours.
On another sad note - took Philip back to the Drs for his ear today and he is not happy with it even though it is clearing up. He is really concerned that it is a skin cancer so decided that on Monday he will take a few samples for a biopsy to get a definitive answer.
I asked him what the treatment is for this type of thing (if it is cancer) and he said radiotherapy and aggressive surgery. His real concern is can Philip's body cope with it.
What we have decided is to wait on the results then if it is cancer he will talk with Philip's neurosurgeon to get his opinion. I told him that quality of life is more important to us these days than quantity and he agrees. So now we have to keep our fingers crossed for good news - guess we have a 50-50 chance.
On a brighter note I got a new wheelchair for Philip today.
His old chair was on load from the hospital and would only take up to 100kgs - as Philip's weight is ballooning and he is now 112kgs we needed to get another. The hospital didn't have one so I had to buy one. I have been shocked at the prices of larger/heavier chairs (from $1500 - $3000) and have spent the week on the phone trying to source a good deal.
Finally some good news yesterday and today we went and tried out some - found a wonderful lady who is the importer for a no-name brand but very good quality. Got an aluminium one that will take up to 130 kgs for a standard chair price. We are so happy. Took him for a little spin in it and stopped at a Gloria Jean's for coffee and cake - mmmmm. He said it was very comfortable and I found it easy to push.
his funny laugh.Ben rang me and we both had a little cry together on the phone when he told me that Nathan said he didn't want to come and see us at all even for just a few hours.
On another sad note - took Philip back to the Drs for his ear today and he is not happy with it even though it is clearing up. He is really concerned that it is a skin cancer so decided that on Monday he will take a few samples for a biopsy to get a definitive answer.
I asked him what the treatment is for this type of thing (if it is cancer) and he said radiotherapy and aggressive surgery. His real concern is can Philip's body cope with it.
What we have decided is to wait on the results then if it is cancer he will talk with Philip's neurosurgeon to get his opinion. I told him that quality of life is more important to us these days than quantity and he agrees. So now we have to keep our fingers crossed for good news - guess we have a 50-50 chance.
On a brighter note I got a new wheelchair for Philip today.
His old chair was on load from the hospital and would only take up to 100kgs - as Philip's weight is ballooning and he is now 112kgs we needed to get another. The hospital didn't have one so I had to buy one. I have been shocked at the prices of larger/heavier chairs (from $1500 - $3000) and have spent the week on the phone trying to source a good deal.
Finally some good news yesterday and today we went and tried out some - found a wonderful lady who is the importer for a no-name brand but very good quality. Got an aluminium one that will take up to 130 kgs for a standard chair price. We are so happy. Took him for a little spin in it and stopped at a Gloria Jean's for coffee and cake - mmmmm. He said it was very comfortable and I found it easy to push.
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