Anniversary of 'suspected Leukaemia' & Alopecia treatment Monday, 30 January 2012 at 20:57
Taken from my original diary on Facebook
I've been wanting to write for a couple of days as 27th-31st January are dates now ingrained in my memory (along with a few others in the last year or so!).
Charlotte started being ill at Christmas 2010 & after countless trips to the GP, out of hours & casualty we we're back at the GP's in an emergency appointment on Wednesday 26th at 5.30pm. I explained that Charlotte had never been so poorly, that all she was doing was lying on the sofa not doing anything and had been since we saw another GP on the Monday. But now she was complaining that her bottom was so sore that she couldn't sit on it....and yet there was nothing there? The GP examined her & said she thought the sore bottom was a red herring but said she actually thought she was a very sick little girl, she had pinched her finger & the refill was slow, she explained that this could mean her body was shutting down. So she rang the hospital while we were still there & said she wanted Charlotte admitting. We went home to pack a bag & a friend took us into hospital. We we're on the assessment ward, they examined her & said they we couldn't find anything & the crucial refill test is when they press on her chest & that was ok. They ended up sending us home as they closed at midnight & they thought she probably just had a virus (which is what all the Dr's had kept saying for weeks), they told us to come back in the morning & they would look at her again & take some bloods.
The day before on the Tuesday I had been given the 2nd treatment on my scalp for Alopecia, which consisted of having a chemical painted on my scalp. The idea of the treatment was that it would cause a reaction like mild eczema. This is what happened with the first application, but the idea was each week to very slightly increase the strength of the chemical & apply to different areas of your scalp. This time they applied right around the back under my hairline (which is much higher than it should be due to the alopecia). This was done at 10am on the Tuesday, at 2am Wednesday morning I woke in agony & didn't get much sleep, I kept applying the steroid cream they gave me to use if it got bad, in between cold wet compress & some aloe vera gele. On the Wednesday it was really painful but Charlotte was so ill, my Mum was ill with a bad chest infection so I couldn't leave Charlotte and go & see a Dr about it.
We got back to the hospital Thursday morning they took bloods & a urine sample from Charlotte, 2 more Dr's examined her. They decided she probably had a virus, but because of her earache to give us stronger antibiotics (just in case), at midday they sent us home & said that if anything did show up in the bloods they would ring us. By the time we left, the staff knew I was in agony with the back of my head/neck & a paediatric Dr who saw it said I needed to see someone about it. It was my intention that as soon as we got back home I was going to be on the phone to the GP. We got home and 10 minutes later the phone rang. It was a nurse from the hospital, she said, I was not to panic, but that Charlotte's blood tests showed a lots of things low in her blood, so I needed to pack a bag & get back there a.s.a.p & she would be staying in for a few days. Don't panic? Well of course you do when they say that & that there was a problem with her blood. Some friends collected us (as Mum was still ill) & took us in.
When we got back there the staff asked if I'd had chance to get my head checked & I explained I hadn't had time, so they arranged for me to go down & be seen straight away by a Dr in Casualty & that by the time I got back up the Dr would be free to see me with Charlotte. The Dr in Casualty asked me loads of questions, they knew nothing of the chemical on my head as it turns out its not licenced to be dispensed in the UK but is being used just by Dermatology to treat Alopecia?? He gave me some piriton tablets and said that's all they could do really as it was a bad reaction to the chemical. I had info given to me about possible rare reactions inc flu symptoms, severe rash etc....and I was suffering with both of these.
So I went back up to the children's ward. We we're taken into a side room & a Dr came in & pulled up a chair near me and had pen & paper...I knew straight away this must be serious. My friends offered to leave, but I wanted them there with me in case it was bad news. The Dr. an African lady called Mildred told me that Charlotte's red cell count was virtually non existent, & also that her white count was as well, and explained that within her white cells are neutraphils which fight infection. This meant Charlotte was anaemic & neutropenic. She explained that this meant her bone marrow wasn't working properly and that I should be aware that cancer was the possible cause. The shock hit me instantly, this was 8 weeks since my Dad's funeral after he died with cancer.....my thoughts were no this can't be really be happening. I was in pieces & she said it was important I try to calm down & take in everything she was saying. She said the positive at that time was that Charlotte's platelet count was ok & usually in cancer that would be low as well. So they had spoken to Southampton about doing a bone marrow test but because of the platelet count being ok they wanted to wait and watch first to see what happened. They then explained that she had loads of signs in her bloods of infection including a high CRP (which indicates infection) & because she couldn't fight it she was actually suffering from Sepsis & very poorly. So she was being put on strong IV antibiotics. We we're wiating to be moved to ward, my head was still killing me, I was completely shell-shocked by what I'd heard and kept getting really hot along with the flu like symptoms. So I went to sit on a seat out in the corridor to cool down a bit, one the Dr's was passing and asked if I was ok, I explained I wasn't feeling well & was just trying to cool down, she apolgised for saying so but said I looked awful & she wasn't happy & wanted me to be taken back down to casualty to be looked at again. She said she'd tell my friends that she was taking me & she came back with a wheelchair. As soon as we got back down there they had me straight on a trolley, I felt awful & really weird, was getting pains across my chest. The nurse canulated me & put a heart rate monitor on my finger, she suddenly asked me if my throat was closing up, I said no, & she dashed round the curtain & called the Dr saying I was tachicardic, then I started getting all tingling across my face & lips, by this time I'm thinking what the heck is going on, its scarey when your body's doing something & you're not in control of it. The Dr came in & another nurse & they explained that my heart rate is so high & they need to do an ECG, thankfully that was fine but they explained that because of what happened & the chest pain they had to admit me overnight for obs...even though my daughter is upstairs on the children's ward! They let my friends know & they couldn't believe that I just went out for some fresh air & now was being admitted! Thankfully Heather agreed to stay the night with Charlotte. Quite late on they put me in a wheelchair & took me up to see Charlotte. It was soo strange having been apart for a few hours, then going up to see her. She was fast asleep, hooked up to 2 drips, but they said she was doing ok & had been fine about Heather staying with her. The Dr's saw me late on & in the morning, repeat tests we're ok & they explained that it was probably a combination of the reaction to the chemical, tolerating such pain for so long & the shock of the news about Charlotte that made my heart go as it did. I remember waking at about 6am, it was all quiet & laying there thinking this can't really all be happening, the news about Charlotte, me being down here in a hospital bed....but it was & it was quite scarey to think of what what going to be happening in the next few days.
By the end of the next day the sore bottom made sense as two really nasty blisters came out on Charlotte's bottom, a sign of the infection in her body. By the 31st Jan, her bloods hadn't improved much at all, but the IV antibiotics had got the infection under cotrol & she was now a lot better in herself, so they said we could go home. They explained to me that they were hoping it was a virus that had attacked Charlotte's bone marrow, & that they were testing her bloods for every single known infection & virus. When we left there was one result still not back, it was for Parvo Virus, and the Dr explained that if she had that it would explain the bone marrow problem as parvo virus can attack the bone marrow. So I thought, lets pray its that then!
We went back regularly for blood tests & bit by bit Charlotte's bloods did start to pick up, but we had to wait until 26th Feb to see a Consultant, so the possibility of Leukaemia was hanging over me all that time. I tried not to think about it & just get on as normal, apart from the 2 friends in the room I didn't tell anyone because I didn't want my family to have the worry as well so close after my Dad's death. I tried giving some garbled explanation about her bone marrow & possible viruses, which they seemed to accept.
I went back to the dermatology nurse at Christchurch hospital the following Tuesday, she asked what had been going on as she had problems finding my notes & could see I'd been admitted to Poole. I said I'd had some problems, her tone & facial expression gave me the impression she didn't really believe me, she asked to see. I turned round, sat down & lifted my hair up to which she responded "oh yes, you've a had a very severe reaction there", & then went on to say "so shall we put some on another part of your head this week then"? I explained about Charlotte & said that until I knew what was wrong with Charlotte & what we would be dealing with I didn't need to be coping with any reactions on my head mild or severe, so I put my treatment on hold.....I've still not gone back to this day. Although I've continued to lose hair, its getting harder to cover with the hair I have left & every time I look in the mirror I don't like what my hair looks like, it paled into insignificance when Charlotte finally got a proper diagnosis & doesn't matter, but some day I have to face accepting it & how I'm going to manage whatever degree of baldness I get to.
The day before on the Tuesday I had been given the 2nd treatment on my scalp for Alopecia, which consisted of having a chemical painted on my scalp. The idea of the treatment was that it would cause a reaction like mild eczema. This is what happened with the first application, but the idea was each week to very slightly increase the strength of the chemical & apply to different areas of your scalp. This time they applied right around the back under my hairline (which is much higher than it should be due to the alopecia). This was done at 10am on the Tuesday, at 2am Wednesday morning I woke in agony & didn't get much sleep, I kept applying the steroid cream they gave me to use if it got bad, in between cold wet compress & some aloe vera gele. On the Wednesday it was really painful but Charlotte was so ill, my Mum was ill with a bad chest infection so I couldn't leave Charlotte and go & see a Dr about it.
We got back to the hospital Thursday morning they took bloods & a urine sample from Charlotte, 2 more Dr's examined her. They decided she probably had a virus, but because of her earache to give us stronger antibiotics (just in case), at midday they sent us home & said that if anything did show up in the bloods they would ring us. By the time we left, the staff knew I was in agony with the back of my head/neck & a paediatric Dr who saw it said I needed to see someone about it. It was my intention that as soon as we got back home I was going to be on the phone to the GP. We got home and 10 minutes later the phone rang. It was a nurse from the hospital, she said, I was not to panic, but that Charlotte's blood tests showed a lots of things low in her blood, so I needed to pack a bag & get back there a.s.a.p & she would be staying in for a few days. Don't panic? Well of course you do when they say that & that there was a problem with her blood. Some friends collected us (as Mum was still ill) & took us in.
When we got back there the staff asked if I'd had chance to get my head checked & I explained I hadn't had time, so they arranged for me to go down & be seen straight away by a Dr in Casualty & that by the time I got back up the Dr would be free to see me with Charlotte. The Dr in Casualty asked me loads of questions, they knew nothing of the chemical on my head as it turns out its not licenced to be dispensed in the UK but is being used just by Dermatology to treat Alopecia?? He gave me some piriton tablets and said that's all they could do really as it was a bad reaction to the chemical. I had info given to me about possible rare reactions inc flu symptoms, severe rash etc....and I was suffering with both of these.
So I went back up to the children's ward. We we're taken into a side room & a Dr came in & pulled up a chair near me and had pen & paper...I knew straight away this must be serious. My friends offered to leave, but I wanted them there with me in case it was bad news. The Dr. an African lady called Mildred told me that Charlotte's red cell count was virtually non existent, & also that her white count was as well, and explained that within her white cells are neutraphils which fight infection. This meant Charlotte was anaemic & neutropenic. She explained that this meant her bone marrow wasn't working properly and that I should be aware that cancer was the possible cause. The shock hit me instantly, this was 8 weeks since my Dad's funeral after he died with cancer.....my thoughts were no this can't be really be happening. I was in pieces & she said it was important I try to calm down & take in everything she was saying. She said the positive at that time was that Charlotte's platelet count was ok & usually in cancer that would be low as well. So they had spoken to Southampton about doing a bone marrow test but because of the platelet count being ok they wanted to wait and watch first to see what happened. They then explained that she had loads of signs in her bloods of infection including a high CRP (which indicates infection) & because she couldn't fight it she was actually suffering from Sepsis & very poorly. So she was being put on strong IV antibiotics. We we're wiating to be moved to ward, my head was still killing me, I was completely shell-shocked by what I'd heard and kept getting really hot along with the flu like symptoms. So I went to sit on a seat out in the corridor to cool down a bit, one the Dr's was passing and asked if I was ok, I explained I wasn't feeling well & was just trying to cool down, she apolgised for saying so but said I looked awful & she wasn't happy & wanted me to be taken back down to casualty to be looked at again. She said she'd tell my friends that she was taking me & she came back with a wheelchair. As soon as we got back down there they had me straight on a trolley, I felt awful & really weird, was getting pains across my chest. The nurse canulated me & put a heart rate monitor on my finger, she suddenly asked me if my throat was closing up, I said no, & she dashed round the curtain & called the Dr saying I was tachicardic, then I started getting all tingling across my face & lips, by this time I'm thinking what the heck is going on, its scarey when your body's doing something & you're not in control of it. The Dr came in & another nurse & they explained that my heart rate is so high & they need to do an ECG, thankfully that was fine but they explained that because of what happened & the chest pain they had to admit me overnight for obs...even though my daughter is upstairs on the children's ward! They let my friends know & they couldn't believe that I just went out for some fresh air & now was being admitted! Thankfully Heather agreed to stay the night with Charlotte. Quite late on they put me in a wheelchair & took me up to see Charlotte. It was soo strange having been apart for a few hours, then going up to see her. She was fast asleep, hooked up to 2 drips, but they said she was doing ok & had been fine about Heather staying with her. The Dr's saw me late on & in the morning, repeat tests we're ok & they explained that it was probably a combination of the reaction to the chemical, tolerating such pain for so long & the shock of the news about Charlotte that made my heart go as it did. I remember waking at about 6am, it was all quiet & laying there thinking this can't really all be happening, the news about Charlotte, me being down here in a hospital bed....but it was & it was quite scarey to think of what what going to be happening in the next few days.
By the end of the next day the sore bottom made sense as two really nasty blisters came out on Charlotte's bottom, a sign of the infection in her body. By the 31st Jan, her bloods hadn't improved much at all, but the IV antibiotics had got the infection under cotrol & she was now a lot better in herself, so they said we could go home. They explained to me that they were hoping it was a virus that had attacked Charlotte's bone marrow, & that they were testing her bloods for every single known infection & virus. When we left there was one result still not back, it was for Parvo Virus, and the Dr explained that if she had that it would explain the bone marrow problem as parvo virus can attack the bone marrow. So I thought, lets pray its that then!
We went back regularly for blood tests & bit by bit Charlotte's bloods did start to pick up, but we had to wait until 26th Feb to see a Consultant, so the possibility of Leukaemia was hanging over me all that time. I tried not to think about it & just get on as normal, apart from the 2 friends in the room I didn't tell anyone because I didn't want my family to have the worry as well so close after my Dad's death. I tried giving some garbled explanation about her bone marrow & possible viruses, which they seemed to accept.
I went back to the dermatology nurse at Christchurch hospital the following Tuesday, she asked what had been going on as she had problems finding my notes & could see I'd been admitted to Poole. I said I'd had some problems, her tone & facial expression gave me the impression she didn't really believe me, she asked to see. I turned round, sat down & lifted my hair up to which she responded "oh yes, you've a had a very severe reaction there", & then went on to say "so shall we put some on another part of your head this week then"? I explained about Charlotte & said that until I knew what was wrong with Charlotte & what we would be dealing with I didn't need to be coping with any reactions on my head mild or severe, so I put my treatment on hold.....I've still not gone back to this day. Although I've continued to lose hair, its getting harder to cover with the hair I have left & every time I look in the mirror I don't like what my hair looks like, it paled into insignificance when Charlotte finally got a proper diagnosis & doesn't matter, but some day I have to face accepting it & how I'm going to manage whatever degree of baldness I get to.
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