Hi everyone,
Not too much news to report at the moment. Tim has been having weekly chemo, but unfortunately this week, was not able to have it as his blood counts were too low. We are only up to week 22 of the protocol, ( it has been 33 weeks since diagnoses) as we have had so many set backs, delays and inclusion of radio therapy. Week 24 sees the regime step it up a notch to intense daily chemo again and this will last till week 34 of the protocol. So really, Tim is just over the half way way mark of intense treatment. A very intense 3 months still to be had. According to the protocol Tim still has 110 weeks of treatment to go..........
Tim's hair is starting to grow back, at this stage we can't make out whether it is grey or blonde fluff.....but it is certainly not red! ( although his beard is!)
Should have more news next week as Tim and I are hopefully going to have a meeting/review with his haematologist and head oncologist. Even though the process is painfully slow, Tim is still making steady progress.
Bye for now,
love Andi
Friday, August 21, 2009
Monday, August 10, 2009
Update 10/08/09
Hi everyone,
Tim was able to recommence treatment last Thursday. This consisted of IV chemo on Thursday and a lumbar puncture (LP - chemo injected into his spine) on Friday. He said the familiar 'chemo feeling' came back straight away and he could feel the effects of it running through his body. The LP, as it has done so in the past, has knocked him out. The only relief from his throbbing head is to lie down, but when horizontal, he has pains in his back and legs. No win. Unfortunately, we have a long way to go with the LP's. They are integral to the maintenance phase of the treatment protocol, which is the next phase after this one. Tim will be having an LP every 8 weeks for 2 years when the maintenance phase begins....we hope this will be in November. The LP's are so vital as they are to prevent a spread or relapse to the CNS (central nervous system). Apparently, the CNS can be a 'hot spot' for relapse. Tim was fortunate that there was no involvement with the CNS when he was first diagnosed. Seeing Tim struggle with his symptoms has been hard. Tim and I discussed this morning, how on earth could a child cope with all this? Knowing that his disease is more commonly found in children, gives us some perspective and some extra courage.
I have been finding it all very hard to cope with lately. I am tired, sick and tired, tired and sad, over it. The best thing I did was have a good day of crying last Sunday...yep in front of the kids too. It seems to have lightened a load. Also, highlighted the power of positive thinking. I believe that is the key.
Strangely, it has been a good thing for us all, to have Tim back on track with treatment. It gives us all a focus. Makes the light at the end of the very long tunnel, a little brighter.
That's it for now........oh, except Tim did shave off that feral beard!!! Yay!
Love Andi
Tim was able to recommence treatment last Thursday. This consisted of IV chemo on Thursday and a lumbar puncture (LP - chemo injected into his spine) on Friday. He said the familiar 'chemo feeling' came back straight away and he could feel the effects of it running through his body. The LP, as it has done so in the past, has knocked him out. The only relief from his throbbing head is to lie down, but when horizontal, he has pains in his back and legs. No win. Unfortunately, we have a long way to go with the LP's. They are integral to the maintenance phase of the treatment protocol, which is the next phase after this one. Tim will be having an LP every 8 weeks for 2 years when the maintenance phase begins....we hope this will be in November. The LP's are so vital as they are to prevent a spread or relapse to the CNS (central nervous system). Apparently, the CNS can be a 'hot spot' for relapse. Tim was fortunate that there was no involvement with the CNS when he was first diagnosed. Seeing Tim struggle with his symptoms has been hard. Tim and I discussed this morning, how on earth could a child cope with all this? Knowing that his disease is more commonly found in children, gives us some perspective and some extra courage.
I have been finding it all very hard to cope with lately. I am tired, sick and tired, tired and sad, over it. The best thing I did was have a good day of crying last Sunday...yep in front of the kids too. It seems to have lightened a load. Also, highlighted the power of positive thinking. I believe that is the key.
Strangely, it has been a good thing for us all, to have Tim back on track with treatment. It gives us all a focus. Makes the light at the end of the very long tunnel, a little brighter.
That's it for now........oh, except Tim did shave off that feral beard!!! Yay!
Love Andi
Monday, August 3, 2009
Update 3/8/09
Hi everyone,
After 7 nights in hospital, Tim was able to leave but unfortunately not come home. As the boys and I were sick, Tim had to spend another 4 nights at my parents home until we were on the improve. It has been a very difficult time and even though Tim is now home, he is in the worst shape he has ever been. He is suffering constant nausea, head aches, dizziness (has almost fainted on me!) leg pain, stomach cramps....the list goes on. He has no energy and has finally lost his spark. It has been very hard/sad/devastating for me to see him like this......not even an attempt at a bad joke!! His spirits lifted slightly when finally allowed to see his children and also when he layed eyes on his beard. Doctors are baffled by his poor disposition as his blood counts are all up and rising..on paper he is ready to move on to the next phase of treatment. On Tuesday he will be reassessed. If there is no improvement in his well being he will be readmitted for observations and if he does improve he will recommence chemo this Thursday.
I have found an excellent medical website that examines Tim's exact condition. It also discusses and clarifies the dilemma over whether Tim has lymphoma or leukemia. As you will read, the World Health Organisation recently unified the disease as T cell lymphoblastic lymphoma/leukemia. This has helped us to understand why some doctors refer to Tim as having leukemia.
Please take the time to read the complete study: Background, Diagnoses, Treatment & Follow up. It is accurate, up to date and informative.
http://emedicine.medscape.com/article/203556-overview
Love Andi.
After 7 nights in hospital, Tim was able to leave but unfortunately not come home. As the boys and I were sick, Tim had to spend another 4 nights at my parents home until we were on the improve. It has been a very difficult time and even though Tim is now home, he is in the worst shape he has ever been. He is suffering constant nausea, head aches, dizziness (has almost fainted on me!) leg pain, stomach cramps....the list goes on. He has no energy and has finally lost his spark. It has been very hard/sad/devastating for me to see him like this......not even an attempt at a bad joke!! His spirits lifted slightly when finally allowed to see his children and also when he layed eyes on his beard. Doctors are baffled by his poor disposition as his blood counts are all up and rising..on paper he is ready to move on to the next phase of treatment. On Tuesday he will be reassessed. If there is no improvement in his well being he will be readmitted for observations and if he does improve he will recommence chemo this Thursday.
I have found an excellent medical website that examines Tim's exact condition. It also discusses and clarifies the dilemma over whether Tim has lymphoma or leukemia. As you will read, the World Health Organisation recently unified the disease as T cell lymphoblastic lymphoma/leukemia. This has helped us to understand why some doctors refer to Tim as having leukemia.
Please take the time to read the complete study: Background, Diagnoses, Treatment & Follow up. It is accurate, up to date and informative.
http://emedicine.medscape.com/
Love Andi.
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