Significant moments Wednesday, 8 February 2012 at 11:52
Taken from my original diary on Facebook
Charlotte's currently in week 6 of an 8 week intensive block of treatment. This is the 2nd time she has done this intensive block the last being just after she started school, in between she's had interim chemo. Its week 36 of her 112 week treatment schedule and all being well this is the last intensive treatment she will need to have! :-)
So its been good to pass little milestones thru this phase of treatment. The first part of her intensive treatment over 3 weeks included a drug which can damage her heart muscles, in fact she had to have a heart scan before she first had the drug to check that she had a completely healthy heart to start with...YAY, she won't have this drug again. It also included a week on, week off, week on of 8.7ml twice a day of the dreaded steroids...YAY, thankfully she won't have to have such a high dose again. During the remainder of her treatment she will just have 5ml twice a day for 5 days every 4 weeks...so the moods & hunger won't be as extreme & by the time they really kick she'll be towards the end of the 5 days anyway. YAY, she also had the last chemo injection into her thigh muscle.
She then had a 2 week 'rest' in the middle as the first part of the treatment wiped out her white cell & neutraphil (immune system) counts. They have to wait until her bone marrow picks up again and the neutraphil count gets back to 0.75 (normal is 2-6). She scraped in with her neutraphils reaching 0.8 on Monday this week...and so we started this last 2 weeks. When her count is below 0.75 she is what they call neutrapenic, and means she's very vulnerable to infection..she's been at school when neutrapenic many times, including when its been zero & done so well not picking anything up.
This last 2 weeks of treatment includes a lumbar puncture with chemo which is done at Southamtpon. Yesterday was her 13th lumbar puncture in 8.5 months since diagnosis, and unfortunately she's been very sick after the last 3. She gets hysterical when I'm taking her in the room for it now as she nows that when they put the general anaesthetic in her line she gets the taste of it in her throat & it tastes awful. Unfortunatley yesterday instead of her stomach settling she continued to be unwel and we ended up having to stay in overnighl. This could be down to the other 2 chemo drugs she was given yesterday. One she willl have daily the rest of this week, into her line & at home the community nurse comes out & does it. She will then have this drug Tues-Fri next week as well. The other chemo drug she had yesterday can irritate the bladder, so they put it in IV over an hour, with 3 hours of IV fluids to help 'flush' it though her bladder as quickly as possible, YAY she doesn't have to have this drug again. Unfortunately as Charlotte didn't keep down much other fluid yesterday & therefore didn't go to the toilet much this has caused her some problems. They've had her on IV fluid & dextrose overnight to help her make up for yesterday, but when the fluids eventually took effect she kept needing the toilet and was in agony when actually going. They did a dip test & she has blood & protein in her water. The blood can be because harshness of the chemo drug & but they don't normally see protein. So its been sent to the lab to see if she has a urine infection. She's been having different anti-sickness drugs and finally kept down some tea last night. She was however sick at 1.30am just as she was due some more anti-sickness med. So we're now waiting to see her consultant this morning to find out if we can go home.
After this phase she goes onto what they call maintenance treatment & I'll write about that another time.
Its been quite strange staying overnight in Southampton as we normally stay in our local hospital at Poole, but in the last 6 months we've only had one night in there anyway. I was given the news of Charlotte's diagnosis in the evening of 18/5/11 at Poole Hospital, at 1am on the 19th we we're transferred to Southampton. At 9am I was sat down with a consultant being told about all what was going to happen. We we're only in here for 8 days as we then transferred back to Poole for the last 2 weeks of our initial stay. In that 8 days Charlotte had 2 bone marrow biopsies, 2 lumbar punctures & 1 operation to insert a central line into her chest...it seem a lot longer than 8 days, but then in some ways it went quick.
I've spoken before about how different it is to actually be on an oncology ward & not just a general ward at Poole. There are pluses & minuses to being in at S'ton. For a start the staff are specialised so are really on the ball with the diagnosis, the treatment & managing the side effects well. The staff are lovely at Poole & if its a straightforward infection etc they're ok, but when Charlotte went there in October as she was being sick so much, once they were happy she didn't have an infection they weren't concerned at all about trying to help manage the nausea & vomitting and we we're left to struggle. This time Southampton have tried a different drug & are keeping us here until they're sure its managed better.
When we we're first admitted to Southampton one of the parents described the ward as a family, albeit a family that no-one wanted to be in. When your child is diagnosed your thrown into a different 'world'. The first thing that struck me was that having heard about other childrens diagnoses, treatment & prognosis I was so relieved that Charlotte has the type of Leukaemia she has with the best cure rates. At the same time its scary as she could have been one of those other children and we could have been thru far worse. When you stay in at Poole you're on a general ward and usually there's no other oncology patients, the other children usually have infections, asthma, accidents etc & their parents don't usually talk to each other as hospital isn't part of their lives normally, not like it is ours. So you feel a bit isolated, but actually you're also 'protected' from the world of 'cancer'. I almost think of Charlotte just having this illness, that needs treatment for a long time & then she'll be better, so I've detached myself from the 'what ifs'. Whenever we visit S'ton & even more so staying on the ward you're reminded of the 'C' word, you're seeing poorly children, its like being put back in that world. I don't want to sound hard but you almost don't want to see it. It is so hard seeing such poorly children, some who have a poor prognosis, agressive treatment, surgery, left with disabilities & worse, I feel so much for them & its awful that they have to go thru this. You can understand people asking why? How can God let this happen.
I've spoken before about the fact I don't know how families cope without a faith. I can't answer why God lets children become ill, but know he doesn't make them ill & he can heal. I have drawn so much strength from my faith & belief in God. I thank him so much that Charlotte has responded to the level of chemo she's been on & not needed to go onto a more agressive regime, that she's stayed so well in herself for the last 6 months & that on the whole she has tolerated the chemo reasonable well.
So our next 2 big moments are going onto maintenance chemo in 3 weeks time on week 39 & a bone marrow biopsy at week 41 to check Charlotte is still in remission
She then had a 2 week 'rest' in the middle as the first part of the treatment wiped out her white cell & neutraphil (immune system) counts. They have to wait until her bone marrow picks up again and the neutraphil count gets back to 0.75 (normal is 2-6). She scraped in with her neutraphils reaching 0.8 on Monday this week...and so we started this last 2 weeks. When her count is below 0.75 she is what they call neutrapenic, and means she's very vulnerable to infection..she's been at school when neutrapenic many times, including when its been zero & done so well not picking anything up.
This last 2 weeks of treatment includes a lumbar puncture with chemo which is done at Southamtpon. Yesterday was her 13th lumbar puncture in 8.5 months since diagnosis, and unfortunately she's been very sick after the last 3. She gets hysterical when I'm taking her in the room for it now as she nows that when they put the general anaesthetic in her line she gets the taste of it in her throat & it tastes awful. Unfortunatley yesterday instead of her stomach settling she continued to be unwel and we ended up having to stay in overnighl. This could be down to the other 2 chemo drugs she was given yesterday. One she willl have daily the rest of this week, into her line & at home the community nurse comes out & does it. She will then have this drug Tues-Fri next week as well. The other chemo drug she had yesterday can irritate the bladder, so they put it in IV over an hour, with 3 hours of IV fluids to help 'flush' it though her bladder as quickly as possible, YAY she doesn't have to have this drug again. Unfortunately as Charlotte didn't keep down much other fluid yesterday & therefore didn't go to the toilet much this has caused her some problems. They've had her on IV fluid & dextrose overnight to help her make up for yesterday, but when the fluids eventually took effect she kept needing the toilet and was in agony when actually going. They did a dip test & she has blood & protein in her water. The blood can be because harshness of the chemo drug & but they don't normally see protein. So its been sent to the lab to see if she has a urine infection. She's been having different anti-sickness drugs and finally kept down some tea last night. She was however sick at 1.30am just as she was due some more anti-sickness med. So we're now waiting to see her consultant this morning to find out if we can go home.
After this phase she goes onto what they call maintenance treatment & I'll write about that another time.
Its been quite strange staying overnight in Southampton as we normally stay in our local hospital at Poole, but in the last 6 months we've only had one night in there anyway. I was given the news of Charlotte's diagnosis in the evening of 18/5/11 at Poole Hospital, at 1am on the 19th we we're transferred to Southampton. At 9am I was sat down with a consultant being told about all what was going to happen. We we're only in here for 8 days as we then transferred back to Poole for the last 2 weeks of our initial stay. In that 8 days Charlotte had 2 bone marrow biopsies, 2 lumbar punctures & 1 operation to insert a central line into her chest...it seem a lot longer than 8 days, but then in some ways it went quick.
I've spoken before about how different it is to actually be on an oncology ward & not just a general ward at Poole. There are pluses & minuses to being in at S'ton. For a start the staff are specialised so are really on the ball with the diagnosis, the treatment & managing the side effects well. The staff are lovely at Poole & if its a straightforward infection etc they're ok, but when Charlotte went there in October as she was being sick so much, once they were happy she didn't have an infection they weren't concerned at all about trying to help manage the nausea & vomitting and we we're left to struggle. This time Southampton have tried a different drug & are keeping us here until they're sure its managed better.
When we we're first admitted to Southampton one of the parents described the ward as a family, albeit a family that no-one wanted to be in. When your child is diagnosed your thrown into a different 'world'. The first thing that struck me was that having heard about other childrens diagnoses, treatment & prognosis I was so relieved that Charlotte has the type of Leukaemia she has with the best cure rates. At the same time its scary as she could have been one of those other children and we could have been thru far worse. When you stay in at Poole you're on a general ward and usually there's no other oncology patients, the other children usually have infections, asthma, accidents etc & their parents don't usually talk to each other as hospital isn't part of their lives normally, not like it is ours. So you feel a bit isolated, but actually you're also 'protected' from the world of 'cancer'. I almost think of Charlotte just having this illness, that needs treatment for a long time & then she'll be better, so I've detached myself from the 'what ifs'. Whenever we visit S'ton & even more so staying on the ward you're reminded of the 'C' word, you're seeing poorly children, its like being put back in that world. I don't want to sound hard but you almost don't want to see it. It is so hard seeing such poorly children, some who have a poor prognosis, agressive treatment, surgery, left with disabilities & worse, I feel so much for them & its awful that they have to go thru this. You can understand people asking why? How can God let this happen.
I've spoken before about the fact I don't know how families cope without a faith. I can't answer why God lets children become ill, but know he doesn't make them ill & he can heal. I have drawn so much strength from my faith & belief in God. I thank him so much that Charlotte has responded to the level of chemo she's been on & not needed to go onto a more agressive regime, that she's stayed so well in herself for the last 6 months & that on the whole she has tolerated the chemo reasonable well.
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