John came home last Friday after 8 days tlc and is in a much better state now. He visited the clinic today and all is well (well as well as it can be).
The eye surgeon also saw him and was very happy with the way his cornea is improving from the damage it received from the radiotherapy. Only 1 more week on replacement tears during the day ! Although we expect that he will likely have them when the effects on his Lacrymal gland appear, but that is another day.
Christmas is coming so John has something to look forward to, as well as his penultimate planned chemo next week.
Thursday, December 07, 2006
Tuesday, November 28, 2006
C+141 Improving daily
John has been visibly improving on a day to day basis with his inflammation going down, soreness going away and raw sections of skin healing. Yesterday he was dancing around with his Brother to a Lazy Town CD, which is something he hasn't done for a while, so he must be feeling better.
Being on the ward got to me over the weekend, so many kids battling away with their own personal wars and putting such a brave face on it, you think you are getting armored against it all, but the feeling of sadness for them all just crept in.
Talking to the parents of one kid who has relapsed whilst on the first course of chemo and is now starting a new combination, just reminded me of the brutality of all this. Adults who have had a chance at life is one thing, but kids is just too much., we just want to protect them from all of this but it just sneaks in and touches our lives unseen.
Being on the ward got to me over the weekend, so many kids battling away with their own personal wars and putting such a brave face on it, you think you are getting armored against it all, but the feeling of sadness for them all just crept in.
Talking to the parents of one kid who has relapsed whilst on the first course of chemo and is now starting a new combination, just reminded me of the brutality of all this. Adults who have had a chance at life is one thing, but kids is just too much., we just want to protect them from all of this but it just sneaks in and touches our lives unseen.
Friday, November 24, 2006
C+137 Back to hospital
Yesterday John was readmitted to the hospital to try to stop any infection and pain from the side of his face where the Radiotherapy has left him with burns and a very painful ear.
I left him last night with him mum waiting for the Antibiotics to be administered and the morphine to start doing it's work. Hopefully he will have had a better night and I will see today how this is helping him.
We need to get him fit for his Flight to see Santa a week on Saturday.
I left him last night with him mum waiting for the Antibiotics to be administered and the morphine to start doing it's work. Hopefully he will have had a better night and I will see today how this is helping him.
We need to get him fit for his Flight to see Santa a week on Saturday.
Monday, November 20, 2006
C+133 Radiotherapy takes it toll
I haven't written for some time, mainly due to the fact that we have been so busy taking John to Radiotherapy for the last 6 weeks, 28 days each with 1.8Gy, 28 round trips to the hospital Monday to Friday. Exhausting for my Wife who took John every day and worse for John who has had the treatment.
It had been very hard on him. First having to lie down under the machine, have a close fitting mask placed over his face and to be clipped to the table so he cannot move his head, then to be left on his own in this strange and frightening environment. For an adult this is hard enough, but for a 6 year old terrifying. To his credit he did it, at first it took a lot of bravery and time to get into the frame of mind to do it. Later it became easier as he relaxed and did it in record times. Such bravery from someone so young.
Secondly the effects of the treatment cut in after 3 weeks with mouth ulcers and an eye infection, which caused him discomfort and pain. The side of his face became very red but he hasn't felt sore from that, which is a small mercy. His ear seems to also have been affected and he is very sensitive to sounds but hopefully that will settle down.
Last Friday saw the end of radiotherapy so a small celebration was had, but whilst his ulcers started to go a week ago, last weeks treatment combined with a chemo block has taken its toll. The ulcers have returned with a vengence and he is in a great deal of discomfort. His pain killers take the edge off it, but he is a rather stoic little boy and refuses the Morphine he has available, "it's not painful, it's just sore" he claims. But he wakes up in pain and it is terrible to hear.
Hopefully over the course of the next few weeks, the immediate side effects will die down and he will be more comfortable. There are already signs that the pills he is taking for the ulcers are having an effect, but we have been told to expect that his energy levels will probably crash in a couple of weeks time. Always something else, but at least that is manageable.
The end is in sight now with only 2 more chemo blocks to go and then hopefully we get the confirmation that he is in remission. A celebration will be held soon after so John can mark the end of [planned] treatment.
Whilst this might seem like an end, it is the start of the next phase. The initial treatment has battered this Rhabdo back hopefully killing it off, but only time will tell whether this is the case. We have been told that after two years we can start to relax, as it is in this time period that he is most likely to relapse if it happens. Some might think that this view is pessimistic, that we should look forward having got over the treatment, but this is the reality which Cancer patients live with. You never know for sure that it had gone, just that it hasn't come back. Cure is such an elusive position, which only time can prove whether it has been reached or not.
Then managing the long term effects of the drugs and radiotherapy.
It had been very hard on him. First having to lie down under the machine, have a close fitting mask placed over his face and to be clipped to the table so he cannot move his head, then to be left on his own in this strange and frightening environment. For an adult this is hard enough, but for a 6 year old terrifying. To his credit he did it, at first it took a lot of bravery and time to get into the frame of mind to do it. Later it became easier as he relaxed and did it in record times. Such bravery from someone so young.
Secondly the effects of the treatment cut in after 3 weeks with mouth ulcers and an eye infection, which caused him discomfort and pain. The side of his face became very red but he hasn't felt sore from that, which is a small mercy. His ear seems to also have been affected and he is very sensitive to sounds but hopefully that will settle down.
Last Friday saw the end of radiotherapy so a small celebration was had, but whilst his ulcers started to go a week ago, last weeks treatment combined with a chemo block has taken its toll. The ulcers have returned with a vengence and he is in a great deal of discomfort. His pain killers take the edge off it, but he is a rather stoic little boy and refuses the Morphine he has available, "it's not painful, it's just sore" he claims. But he wakes up in pain and it is terrible to hear.
Hopefully over the course of the next few weeks, the immediate side effects will die down and he will be more comfortable. There are already signs that the pills he is taking for the ulcers are having an effect, but we have been told to expect that his energy levels will probably crash in a couple of weeks time. Always something else, but at least that is manageable.
The end is in sight now with only 2 more chemo blocks to go and then hopefully we get the confirmation that he is in remission. A celebration will be held soon after so John can mark the end of [planned] treatment.
Whilst this might seem like an end, it is the start of the next phase. The initial treatment has battered this Rhabdo back hopefully killing it off, but only time will tell whether this is the case. We have been told that after two years we can start to relax, as it is in this time period that he is most likely to relapse if it happens. Some might think that this view is pessimistic, that we should look forward having got over the treatment, but this is the reality which Cancer patients live with. You never know for sure that it had gone, just that it hasn't come back. Cure is such an elusive position, which only time can prove whether it has been reached or not.
Then managing the long term effects of the drugs and radiotherapy.
Monday, October 02, 2006
C+84 Rhabdomyosarcoma in retreat
Things have been relatively quiet recently, the treatment has continued as before, infections kept at bay, blood counts just warding off transfusions. Just the expected march forward with no nasty surprises.
We have had some good news with the MRI which John had 10 days ago. We saw the Consultant last Thursday and received the news that the tumour was nearly gone. It's original size was 5.5cm x 4.5cm and looked much bigger (on the prediagnosis scans) than we originally got the impression of from its outward signs, quite scarey to see and I am glad that I didn't see the scan results without the new ones to put things into perspective.
The part of it which had found its way into his skull and was pressing on his brain has retreated and no sign can now been seen of it in his skull, and the remainder now looks quite small, so a good indication that the Chemo Drugs (Vincristine, Actinomycin and Ifosfamide) are doing the job they are supposed to do.
The new addition to the regime, Radiotherapy, starts today. This is the one which is making us nervous as John has done so well with coping with everything thrown at him so far, that we are concerned that the new side effects will be hard on him. Particularily the soreness which he might get to the side of his face and head. We know that it is possible that this will not affect him, but one never knows. Whetever happens we will be there to support him and in five weeks and two days time it should be over. Another battle in the war against this cancer taken and hopefully won.
We have had some good news with the MRI which John had 10 days ago. We saw the Consultant last Thursday and received the news that the tumour was nearly gone. It's original size was 5.5cm x 4.5cm and looked much bigger (on the prediagnosis scans) than we originally got the impression of from its outward signs, quite scarey to see and I am glad that I didn't see the scan results without the new ones to put things into perspective.
The part of it which had found its way into his skull and was pressing on his brain has retreated and no sign can now been seen of it in his skull, and the remainder now looks quite small, so a good indication that the Chemo Drugs (Vincristine, Actinomycin and Ifosfamide) are doing the job they are supposed to do.
The new addition to the regime, Radiotherapy, starts today. This is the one which is making us nervous as John has done so well with coping with everything thrown at him so far, that we are concerned that the new side effects will be hard on him. Particularily the soreness which he might get to the side of his face and head. We know that it is possible that this will not affect him, but one never knows. Whetever happens we will be there to support him and in five weeks and two days time it should be over. Another battle in the war against this cancer taken and hopefully won.
Tuesday, August 22, 2006
C+43 New Worries
Things have been going well, John is in good spirits and managed to keep away from infection so far. We had a near miss with a stomach virus last week which ran through the family (I lost 1st in 48 hours) and whilst John was affected he didnt need to be hospitalised, although he has dropped by 1 kilo.
His eating hasn't been easy so when we go into the hospital on Thursday for the start of the 3rd block, then we are expecting them to put a nasogastric tube in so we can guarentee that he is getting enough of the right type of food. Unpleasant for him to have it inserted but necessary if he is going to keep up the strength he needs.
Haemaglobin levels are slowly dropping so we are expecting to have a blood transfusion soon. He is looking very pale and could do with a bit of 'pinking up'.
Things have been going so well and we have got our minds [almost] sorted on where we are and what is happening and yesterday we met the Radiologist. All of a sudden we meet a new set of concerns, risks, side effects which we knew were coming, but still grabs you and throws you back into that emotional turmoil of what if. Again all stastical risks and the worst may never materialise but as Geoff Wayne wrote in 'War of the Worlds' ... 'the chance of anything coming from mars are a million to one.. but still they come !'
We now hear about the likely Pituitary Gland problems and the fact that John may need to be on daily growth hormones until he is 16. The possibility of cataracts in his left eye, impacted growth of the muscle and bone in his left cheek, tooth decay (caries) and the posibilities of secondary malignancies all now appear with Radiotheraphy fast approaching. All stuff which is scary enough, but can we do without it ? Unfortunately the odds stack up in favour of us going ahead, not something which you as a parent would wish to have to put you precious children through, but the chance of giving him the best odds of survival is something which just has to be done, whatever the side effects. We will managed those with him.
Onbe positive thing is that we are no longer having weekly vincristine injections, so that is one less thing for John to go through.
His eating hasn't been easy so when we go into the hospital on Thursday for the start of the 3rd block, then we are expecting them to put a nasogastric tube in so we can guarentee that he is getting enough of the right type of food. Unpleasant for him to have it inserted but necessary if he is going to keep up the strength he needs.
Haemaglobin levels are slowly dropping so we are expecting to have a blood transfusion soon. He is looking very pale and could do with a bit of 'pinking up'.
Things have been going so well and we have got our minds [almost] sorted on where we are and what is happening and yesterday we met the Radiologist. All of a sudden we meet a new set of concerns, risks, side effects which we knew were coming, but still grabs you and throws you back into that emotional turmoil of what if. Again all stastical risks and the worst may never materialise but as Geoff Wayne wrote in 'War of the Worlds' ... 'the chance of anything coming from mars are a million to one.. but still they come !'
We now hear about the likely Pituitary Gland problems and the fact that John may need to be on daily growth hormones until he is 16. The possibility of cataracts in his left eye, impacted growth of the muscle and bone in his left cheek, tooth decay (caries) and the posibilities of secondary malignancies all now appear with Radiotheraphy fast approaching. All stuff which is scary enough, but can we do without it ? Unfortunately the odds stack up in favour of us going ahead, not something which you as a parent would wish to have to put you precious children through, but the chance of giving him the best odds of survival is something which just has to be done, whatever the side effects. We will managed those with him.
Onbe positive thing is that we are no longer having weekly vincristine injections, so that is one less thing for John to go through.
Tuesday, August 08, 2006
C+39 2nd block started
Last week saw our second stint in hospital for Johns Ifosfamide/Vincristine/Actinomycin cocktail which all went very well. He seems to suffer on the second day with a bit of nausea and general grumpiness, but who can blame him.
He is doing very well with all external signs of the Rhabdo having gone now, his light sensitivity is nowhere to be seen, so all good progress.
He is doing very well with all external signs of the Rhabdo having gone now, his light sensitivity is nowhere to be seen, so all good progress.
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