School & Hospital Visits & ... REMISSION! Friday, 17 June 2011 at 19:55
Taken from my original diary on Facebook
Wednesday saw us off to Charlotte's new school for 9am. The children who are due to start in September get two mornings in their classroom, the first was this week and the 2nd in a fortnights time. Charlotte met her new teacher, Miss McClaverty and thinks she is very nice, she also met Mrs Geel the assistant. The classroom was laid out with different activity tables along with the play area. Charlotte drew & coloured a lovely pink picture of herself which will have her name added and will be on her coat peg when she starts. She stayed in her pushchair most of the time but did get out to sit at the tables. The steroid dose she is on make her thigh muscles feel very weak & tired so most children take back to a pushchair during this time & particularly struggle with stairs. We stayed 40 minutes and then Charlotte wanted to go, so we left. We grabbed a quick coffee at AWK (mum's & tots) before picking my mum up & setting off for our outpatients appointment at Poole Hospital.
It was just for a general check up & take bloods...the results were rung through later and were all ok. Charlotte was particularly grumpy & making a lot of noise in the Dr's room so when he'd finished checking Charlotte mum took her out so that I could concentrate on what he was telling me about the next phase of her treatment. Unlike with tumours the chemo for Leukaemia is continual with the most intense being for at least the 1st 6 months and maybe longer depending on the response. The remainder of the total 2 years chemo is then classed as maintenance treatment (daily medicine & monthly injections). The induction phase involves intensive treatment aimed at destroying as many leukaemia cells as possible. This phase lasts for 5 weeks for Charlotte and she has started her last week today. She has been having steroid med's twice a day, IV chemo once & week, injection fortnightly & a drug into her spine via lumbar puncture 3 times in the 5 weeks. During this last week her steroid dose is being halved every 2 days and then stopped (YIPPEE!, her massive appetite will subside, she'll sleep better again & they tell me behaviour wise I will get my Charlotte back!). At the same time she has started taking another chemo medicine today which will be daily for several weeks now. At the end of the induction phase a bone marrow test is taken to confirm whether or not Charlotte still has leukaemia. When there is no evidence, the condition is referred to as being in 'remission'.
On Thursday as Charlotte obviously woke in a very bad mood mum & I did all we could to take her places of interest, treats, bribery....but as you find during this phase...sometimes nothing is right, or it is for a short while then she's had enough. The constant grizzling is really hard to tolerate and I've been told to try & stop it as I would normally as the Dr says if I don't, I will find myself at the end of this with a 'spoilt little brat' (his words). But it makes you really fed up with the whole situation you've found yourself in.
Today we had to leave home at 7.30am to get into Southampton Hospital for 8.30. Charlotte had a general anaesthetic (which means no food since midnight + no water since 7 = 1 very, very hungry, grumpy & grizzly child!) She went into theatre at 9.15am for bone marrow biopsy & chemo into spine via lumbar puncture. She's in for about 40 minutes then she has to stay laid flat for another 30 to allow the chemo drug to disperse properly - trying to get a starving child to stay laid down when all she wants to do is sit up & eat is not easy, but Heather who came with me today was brilliant at getting Charlotte to think it was fun to have a picnic whilst laying down. After she could sit up the IV chemo was done and then I had to be shown how to dissolve her new chemo tablets to give to her as a med & then dispose of the syringe (whilst wearing gloves) as then chemo drug would be so harmful to me or anyone else who could come into contact with it.
There are two results to come from today's bone marrow biopsy, one is the normal basic test in the lab - and the hospital rang me late afternoon to tell me the great news and an answer to prayers that the leukaemia is in 'remission'. The 2nd test takes longer as the sample is sent away to a lab where they look at the 'micro' make up of 'any' tiniest fractions of leukaemia cells that do happen to be left. This result could take a week to come through and potentially could affect her treatment in that there is still a chance that she would have to change from her current regime of chemo to the strongest one, so praying that this is positive news as well.
So now Charlotte is in remission the next phase of treatment is aimed at maintaining the remission, and also preventing the spread of leukaemia cells into the brain and spinal cord - so for the next 3 Fridays she will have another injection into her spine via lumbar puncture as the first part of this phase (I'll write about more as we progress..the Dr's don't tell you too far ahead of whats planned because theres so many different drugs & methods & also possible changes its best not to count on anything). As far as the chemo is concerned Charlotte shouldn't need to be in hospital anymore, however, because of the chemo her immune system will be poor so we have been prepared that we may have numerous hospital stays as she is treated with IV antibiotics for infections.
Wednesday saw us off to Charlotte's new school for 9am. The children who are due to start in September get two mornings in their classroom, the first was this week and the 2nd in a fortnights time. Charlotte met her new teacher, Miss McClaverty and thinks she is very nice, she also met Mrs Geel the assistant. The classroom was laid out with different activity tables along with the play area. Charlotte drew & coloured a lovely pink picture of herself which will have her name added and will be on her coat peg when she starts. She stayed in her pushchair most of the time but did get out to sit at the tables. The steroid dose she is on make her thigh muscles feel very weak & tired so most children take back to a pushchair during this time & particularly struggle with stairs. We stayed 40 minutes and then Charlotte wanted to go, so we left. We grabbed a quick coffee at AWK (mum's & tots) before picking my mum up & setting off for our outpatients appointment at Poole Hospital.
It was just for a general check up & take bloods...the results were rung through later and were all ok. Charlotte was particularly grumpy & making a lot of noise in the Dr's room so when he'd finished checking Charlotte mum took her out so that I could concentrate on what he was telling me about the next phase of her treatment. Unlike with tumours the chemo for Leukaemia is continual with the most intense being for at least the 1st 6 months and maybe longer depending on the response. The remainder of the total 2 years chemo is then classed as maintenance treatment (daily medicine & monthly injections). The induction phase involves intensive treatment aimed at destroying as many leukaemia cells as possible. This phase lasts for 5 weeks for Charlotte and she has started her last week today. She has been having steroid med's twice a day, IV chemo once & week, injection fortnightly & a drug into her spine via lumbar puncture 3 times in the 5 weeks. During this last week her steroid dose is being halved every 2 days and then stopped (YIPPEE!, her massive appetite will subside, she'll sleep better again & they tell me behaviour wise I will get my Charlotte back!). At the same time she has started taking another chemo medicine today which will be daily for several weeks now. At the end of the induction phase a bone marrow test is taken to confirm whether or not Charlotte still has leukaemia. When there is no evidence, the condition is referred to as being in 'remission'.
On Thursday as Charlotte obviously woke in a very bad mood mum & I did all we could to take her places of interest, treats, bribery....but as you find during this phase...sometimes nothing is right, or it is for a short while then she's had enough. The constant grizzling is really hard to tolerate and I've been told to try & stop it as I would normally as the Dr says if I don't, I will find myself at the end of this with a 'spoilt little brat' (his words). But it makes you really fed up with the whole situation you've found yourself in.
 |
| Sporting her new bobbed haircut & steroid chubby cheeks & enjoying a swing at Moor Valley |
Today we had to leave home at 7.30am to get into Southampton Hospital for 8.30. Charlotte had a general anaesthetic (which means no food since midnight + no water since 7 = 1 very, very hungry, grumpy & grizzly child!) She went into theatre at 9.15am for bone marrow biopsy & chemo into spine via lumbar puncture. She's in for about 40 minutes then she has to stay laid flat for another 30 to allow the chemo drug to disperse properly - trying to get a starving child to stay laid down when all she wants to do is sit up & eat is not easy, but Heather who came with me today was brilliant at getting Charlotte to think it was fun to have a picnic whilst laying down. After she could sit up the IV chemo was done and then I had to be shown how to dissolve her new chemo tablets to give to her as a med & then dispose of the syringe (whilst wearing gloves) as then chemo drug would be so harmful to me or anyone else who could come into contact with it.
There are two results to come from today's bone marrow biopsy, one is the normal basic test in the lab - and the hospital rang me late afternoon to tell me the great news and an answer to prayers that the leukaemia is in 'remission'. The 2nd test takes longer as the sample is sent away to a lab where they look at the 'micro' make up of 'any' tiniest fractions of leukaemia cells that do happen to be left. This result could take a week to come through and potentially could affect her treatment in that there is still a chance that she would have to change from her current regime of chemo to the strongest one, so praying that this is positive news as well.
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