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Coming home seemed like the ultimate goal. It seemed to be once we had made it to there we could all be together and start putting our lives back together.
Bryony was back at school and able to be part of her friend social times again. Kale had us all back and so be could settle back to normal. And Armand and I would at least be in the same house and able to talk about things. Life would start to normalise to a certain extend.
I knew it was not going to be smooth sailing but like this whole sickness everything is totally unknown.
Not only is Bryonys health unknown. Appointments we will need to attend. But how much learning she has missed and how difficult she has found learning all the way along. Kale now also has big gaps and I feel I have let them both down as a mum. We can’t afford and never could afford tutors but I should be able to help.
I start off with good intentions and then give up with it all. In away it makes me cross too that I am the one worrying and taking it on while Armand just says well we will have a meeting with school. I know as much as he does school has soon many children to worry about and our two are not a priority.
I again have given up my job. One where I felt comfortable and where I was happy. But after discussions of who would do what etc. Again I feel like I am the one who has to worry about everything and Armand just carries on. He was suppose to go back to work in January so that when my sick leave ended I could go back and he could take his time off then. But as seems usual he is happy just for me to give up my life and job and earn no money, so take on the roll of worrying about where the money will come from. (Check the bank: Armand checks £322. Date: 12 August. Still a whole month to get through.) (I have had a message to play golf tomorrow, can I go?) (My mind explodes why would you even consider it? Why? It is times like this when I feel so detached from him.) I look at him and think really? How could you even consider it? I feel so cross and disappointed. Yes he is happiesh at More House but he has done absolutely nothing in the last 11 years to try and get any further. No English, no QTS, no nothing except sit where you are. It is times like this where I feel emotionally closed to it all as I struggle again to make things work for our family.
I don’t feel I can say anything to him cause he then becomes oh woe is me. I am so terrible and such a disappointment but we just carry on as we always have nothing changes at all. What’s the point??
I think I vet more and more depressed and just want to sleep the world away.
Just been to Exmouth for a week but don’t feel like I had a break really. Thinking of food lunch and dinner, snacks, activities. Emotionally trying to support both kids. Trying to keep the peace etc.
Come home, did you have a good time? Yes it was nice but no too I didn’t get a break at all. But wasn’t about me? Was about the kids having fun.
Today headed out for a walk only got a quarter way around as met up with family for second part and all fell to pieces. Bryony sat in the bush and said, ” I just want to stay here. I don’t want to go on. I am scared and frightened. I don’t want to go to secondary school. I don’t want to have fun cause it will come back. Kale was crying cause everyone wants him to do things and he can’t.
I end up walking back to the car trying to allow them both to feel as they do cause they have the right to. Armand takes the bikes and just walks off himself leaving both children to me. End up coming home in car to keep the peace.
I am getting more and more frustrated and depressed. Then he want to be intermit and have a cuddle here and there because he wasn’t a one. Well I don’t. When do I get what I want???
I close my eyes and sleep.
Even nextdoor building when they shouldn’t but does he have the balls to sort it. No we just ignore it. Unless I nag and nag until we fight.
Life definitely seems to be getting worse. I am ever good about money and it always worries me sick but now I look at Bryony lying in bed and feel so greatful she is there but in the back of my mind I know it could all go again. I know I need to be positive and tell myself not to think about it but you can’t just switch the thoughts off. And knowing how hard this year is going to be scholastically makes my heart bleed too. I feel just like Pixie want to sit down and the whole world freeze or go back to last October and take it all away but I know I can’t I know we have to go forward one step and a time. Put a brave face on but to be honest I am sick and tired of a brave face.
On the 1 November after two and a half weeks of headaches, feeling tired and a yellow jaundiced colour. Four trips to the doctors and a diagnosis of migraines. Prescriptions for sumatripan, propanolol and another further betablocker.
We encouraged Bryony to continue with her sport telling her she would feel better if she got up and exercised. Her body would get used to moving again and she would feel better. We even sat at the side of the trampoline while she took her turn and then left her to do her gymnastics. On the Sunday I took her to hockey where she played for an hour before her coach brought her to the car as she was ditting in the dug out feeling sick and getting cold.
We headed to Camberley to watch a movie as we hadnt been able to during the week. But there were none we wanted to see. So we had lunch out. And then went home for some quiet time before school started again.
Monday morning Bryony cried and was really tired but she got dressed for school and bravely headed in. Not only did she make it through school on that 30 October 2017 but she made it through her ballet class. She came home saying she felt better. We were pleased she was on the mend finally.
Tuesday our hopes crashed again as she got ready for school. She cried holding on saying she couldn’t do school. We encouraged her in and made sure she went off telling her she would feel better. But by lunchtime the school phoned her dad to say she needed to be picked up please.
That afternoon I left school promptly rushed home fetch my son from clubs and the four of us headed into Guildford to the AnE.
Hoping we wouldn’t be long as we needed to get home for dinner we signed in and went through to the paediatric side.
We had only sat down for a short time we the triage nurse called us in and asked what had been the problem. I explained that we had an appointment in the paediatric department and from all the doctors had said etc I was trying to wait until then because if it was viral then nothing more would be done for her. Especially as we were then at the end of week three and would probably be the end of it.
We were asked for a urine sample and Bryony had magic gel on her hands and arms as the nurse felt she may need a blood test. We again then has a half an hour wait for the cream to kick in. We then went into have bloods taken and a cannula put in. Gain we had a wait but not as long as we thought. Felt relieved it hadn’t been too long and that we would be home soon.
The doctor then came in again and asked if she had felt unwell at all or had she been this chirpy. I felt guilty and thought he was telling me I was wasting his time. But he reassured me this was not the case and they knew that Bryony really was ill. He went off saying he just wanted to check if there were any other tests that he needed to do before admitting us to hospital as he felt Bryony would need some observations done overnight and maybe a blood transfusion. We were taken upstairs with Bryony in a wheelchair and put in our own room on the ward. Armand and Kale rushed home to pack us a few things and bring in Fluffles.
That night we slept on and off with the nurses doing observations every four hours. My bed was right next to Bryonys and I held her hand that night both to give her strength and myself.
The next morning the message I sent my mum read, “Haemoglobin consultant concerned about bloods. Dr got no more answers they are saying worst case scenario is Leukemia but I know it won’t be that. Dr just said he wants to prepare me incase it is so not such a shock. So we have a five hour wait for results that have now been sent off.”
That day we were told expected Leukemia. That night it was confirmed. We told Bryony in the best ways we could all along as she knew we were worried and that things were wrong. On Friday the 3rd NOVEMBER we were blue lighted to the Marsden in Sutton and this surreal, fear evolving, terrifying journey started all the while feeling like I was watching someone else’s life.
Sunday morning we heard the next set of BAD news, Wrong one. ALL acute myeloid Leukaemia so we are off to St George’s tomorrow. Operation Monday start treatment. Month to 6 weeks in hospital then home but all treatment needs to be in hospital. So shorter but more intensive. Success rate not as high depends on child and response
On the Sunday we were again transferred by ambulance to St George’s so that Bryony could have her Hickman line put in, her bone marrow aspiration and a lumber puncture.
She was terrified about it all having never been in a hospital or having anaesthetic or anything of the kind.
I held her little hand as she watch the white milk move up her cannula and she went off to sleep. We were given a beeper and told that we would be beeped when we could go back down and find her.
6 November 2017
“She is in. She was very brave. Didn’t have gas just put milky liquid in her cannula. So now we wait.”
“Just waiting taking longer than we thought. But we had a chat with the consultant and know a bit more about Chemo, treatment etc.”
When we went down to get her she was still very groggy and looked ever so tiny in the bed.
She was wheeled back up to the ward and had some watermelon to eat.
It’s a Lady. She got wheeled in and climbed on bed then did anaesthetic like you. But play therapist had been this morning and showed her photographs of it where she was going and we saw a doll with Hickman so she could feel it etc.
Chemo starts Wednesday, will have 3 doses everyday for first four days. Then twice a day for ten days. Will probably need tube in her nose which she really didn’t want but it is because the chemo will affect her lining in her mouth and throat so won’t want to eat. And chemo suppresses appetite. No steroids with this one. After month another bone marrow hopefully she will respond well and then probably for more treatments month long with stays in hospital. But may have a few days at home in between depending on how she responds.
Bryony walked down to the Theatre today with a lot of anticipation and nerves. We walked in and she bravely climbed onto the table. The anethetist told her to count as I held her hand. This was the worst feeling in the world. We were given a buzzer to call us when she was in recovery. Shehad her first aspirate, lumber puncture, chemo into spine. This all toom alot longer than we thought. We went to Marks a d spencers to buy her some fruit for when she woke up. Elsja came in to see us too to explain what we were goinv to be going through dependant on the results of the test. Although the strong chemo was to be started asap. Once we had had her echo. After what seemed lime a life time the buzzer went off. I just about ran down to get her. She was still very grovgy and not sure where dhe was. Again as a mum this is very scary to see your little girl struggling to come round.
**She is back bit disorientated but has eaten some fruit and all good so far.
[06/11/2017, 19:54] Carol Faasen: All good Izzy was here so she is now all bright and having something more to eat. Hickman in cannulaes out. Lumbar puncture and bone marrow result before end of week. X
[06/11/2017, 20:15] Carol Faasen: Hickman bleeding nurses just changing dressing. Being really grown up about it all.
Hopefully we are moving back to Marsden at 3. But that means anytime after three and may not happen going on experience so far. She is asking who is coming today and would like visitors but says I need to say she maybe sleepy. Should be straight fwd day today. But her cuts are bleeding quite a bit.
Staying here tonight again. Haven’t had echo yet. Not sure where the lady is she seems to have gone awol. If it doesn’t happen today then may have it at Marsden or a day trip to another one.
Back to Marsden in morning then will organise it there or at another hospital.
She is OK. Had morphine for pain and help her sleep. Had her little friend Amy which was lovely. Had a bit of a rough time cause had to change dressing again. But she was really brave. Just looked at her lying in bed chatting to me and felt really sad. But trying to think about just today and tomorrow and know she will be strong and get better. But in the back of my mind I am pleading and praying that she does. Can’t even think about it. Soo unfair!!
Thanks. Just feel so helpless and what if it doesn’t work. What will I do then??
I keep telling myself that but we don’t know that!!
I know I know…. it will cause she is so amazing and so brave. It’s just soo unfair. Xx
Ambulance here on our way. Xx
We are back. Best trip out of all three.
Change of plan echo only Friday so nothing till then. X
[08/11/2017, 17:35] Carol Faasen: Soryy didnt reply earlier had a snooze. Cause was awake from half four as Bryonys Mr Buttons was beeping. Luckily didnt wake her up. Good plan about face time she loves her new phone and ipad little fiend on that. Been messaging her friends all afternoon even a BOY!! Xx
[08/11/2017, 17:36] Carol Faasen: Sorry not soryy
Yes at 10. Our ambulance arrives at about 9. Don’t worry re coming we really understand. Kale is taking stain I think so am going to try to make it home this weekend to spend some time with him. Xx
All done heart strong!!!
Don’t come tonight mom. It’s too much all the time for you two and Kale. He can come tomorrow.
Don’t worry mum let him have sometime at home. Bryony is going to have her first dose of chemo tonight and both Armand and I are short tempered cause Dr has put wrong thing on note so won’t get paid if we don’t get it change all these people are just arse holes.
[10/11/2017, 21:07] Carol Faasen: Yip sleeping ok and getting a nap in when Armand gets here too. So I am fine. We met the psych today seemed a bit vague. But she is coming back next week so we will see then. How you feeling? How was the rest of your week?
[10/11/2017, 21:08] Carol Faasen: Still waiting for them to bring chemo so Armand waiting with us to hear what they say. But don’t know if it will be tonight seems so slow but guess I am just impatient.
[10/11/2017, 22:17] Carol Faasen: Here we go!! Two doses tonight.
[10/11/2017, 22:27] Carol Faasen: Do it while she sleeps. Goes in her bag. Might be feel sick after first one so giving her anti sickness twice too. Hold thumbs it’s a smooth as can be journey and it works super well!! Xx
[10/11/2017, 23:17] Carol Faasen: Had first dose of mitoxantrone and now over hour has her dose of cytarabine. She has thankfully gone to sleep. It is such a tiny amount must be really really strong. Feel like I am poisoning my little girl. This is the crappiest straw to be dealt. Can’t believe we drew it.
[10/11/2017, 23:40] Carol Faasen: I know I am trying. How many doses of chemo did Jean have?
[10/11/2017, 23:43] Carol Faasen: Hanging in just have moment of down then pick up my head and move on. One foot in front of the other. Just a few wobbles along the way.
[10/11/2017, 23:44] Carol Faasen: Doesn’t matter really. Just wondered.
[10/11/2017, 23:46] Carol Faasen: I know. Thanks. X
[11/11/2017, 10:38] Carol Faasen: Bryony is really tired and feeling quite down today. Don’t think visits are good today. X
[11/11/2017, 10:53] Carol Faasen: Now. Three a day. X
[11/11/2017, 17:49] Carol Faasen: Yip just they just seeing about paracetamol or antibiotics. Took blood for cultures. X
[11/11/2017, 21:22] Ice-Armand: So here we are, daddy and daughter settling in for the night. Bryony is feeling little better and will be having her chemo at 11:00pm. Given daddy a lot of instructions for the night.
[12/11/2017, 08:33] Ice-Armand: Bryony had temperature during the night and this morning. They gave her some paracetamol to break it. She was awake to say morning, but has gone back to sleep.
[12/11/2017, 10:49] Ice-Armand: Just had some more chemo.
[12/11/2017, 10:55] Ice-Armand: They recon she might have another temperature.
[12/11/2017, 11:09] Ice-Armand: Yes and she is also having some antibiotics to make sure of no infection.
[12/11/2017, 17:21] Carol Faasen: No all good thanks had a night at home last night. Armand gone early tonight with Kale so he can get an early night. All about one day at a time. Thanks though. X
[12/11/2017, 18:25] Carol Faasen: Busy talking to Izzy will let you know when she is off. Thanks for the cake. Xx
[14/11/2017, 19:47] Carol Faasen: She is feeling a bit better but always seems to at this time. She has had more blood today because her haemoglobin was low again but that is to be expected. Her temp. Has been better today but has been on the up this afternoon so we are just monitoring it. How you all ?
[14/11/2017, 22:24] Carol Faasen: She dropped down today. L.P. we didn’t see the doctors at all today and haven’t seen the consultant either so on our list to ask hopefully tomorrow. Thanks Ted but can’t do anything just the nature of the Beast. X
[15/11/2017, 17:19] Carol Faasen: Does anyone have a little reading light for me to borrow.
[15/11/2017, 19:41] Carol Faasen: Just need a little light daddy cause at 7:30 I have to switch Bryonys cubical lights off then I can’t read or anything.
[15/11/2017, 22:08] Carol Faasen: Thanks Kim can buy one for 5 pounds that just clips on the book. Been better tonight.
[15/11/2017, 22:21] Carol Faasen: Having a good evening and night. Lying with me on my bed looking at pictures of Disney land. Having girly time. Temp. Normal so good at moment thanks. How you all. Head torch would be great if I can borrow it. Thanks. Xx
04/11/2017, 12:22 AM – Messages to this group are now secured with end-to-end encryption. Tap for more info.
03/11/2017, 6:15 PM – ICE Carol created group “Bryony update”
04/11/2017, 12:22 AM – ICE Carol added you
03/11/2017, 7:41 PM – Kim: That’s good. Hopefully ambulance comes soon.
03/11/2017, 7:51 PM – Lynne Davis: Oh bless her thatâ€™s awful waiting so long but hopefully soon. X
03/11/2017, 8:17 PM – ICE Carol: We are in our new room safe and sound.x
03/11/2017, 8:19 PM – Kim: Glad to hear it.
03/11/2017, 8:36 PM – Lynne Davis: Oh good. Still private? Do you have a parent bed? What ward you in? Hope you get some sleep xx
04/11/2017, 8:19 AM – ICE Carol: We had a good sleep thank you. Bryony has had her blood transfusion and so is feeling much better today. Which I know is only for a short while but it is good to see her feel better after so long. WISH I could say that was it and we are off today and she can go back to normal but unfortunately that is not the case. So just happy she feels better for now. Xx
04/11/2017, 8:30 AM – ICE Dad: Thatâ€™s great Ted. Donâ€™t worry at least we know that we are on the correct road. Itâ€™s going to be a bit of a hike but our princess will be back to normal next year. Try and relax and build yourself up, we will be up this evening and will tell you my next plan. Lol to you both have a nice day. Dad
04/11/2017, 8:41 AM – ICE Carol: Thank you you too .
04/11/2017, 3:56 PM – Lynne Davis: We on our way. Kale snotty with a bad cough is that ok to come in? Xx
04/11/2017, 5:32 PM – ICE Carol: Wrong one. ALL acute myeloid Leukaemia so we are off to St George’s tomorrow. Operation Monday start treatment. Month to 6 weeks in hospital then home but all treatment needs to be in hospital. So shorter but more intensive. Success rate not as high depends on child and response
04/11/2017, 10:06 PM – ICE Carol: Off to St George’s tomorrow morning about ten. Preparation day tomorrow then we will hopefully have op. On Monday and depending on time will come back Monday later or Tuesday morning. Will let you know in morning once we are there etc. Thank you all for coming for all your help and support and love we really appreciate it. Sure will have had a tour of the hospitals. Night all.
04/11/2017, 10:11 PM – Lynne Davis: Well if you end up in Chelsea I am your ladyðŸ˜‰. Hope you get some sleep and we will see you soon xx
04/11/2017, 10:21 PM – ICE Carol: Will give you a call if the ambulance gets lost.
05/11/2017, 1:11 PM – ICE Carol: Still waiting for transport to St George’s we were supposed to be picked up at 11 so let’s hope it will be sometime today. X
05/11/2017, 1:12 PM – Kim: Golly ambulances must be really busy again. Hopefully they come soon!!
05/11/2017, 2:18 PM – ICE Carol:
05/11/2017, 2:26 PM – Kim: ðŸ‘
05/11/2017, 3:06 PM – ICE Dad: Great have a nice ride and get there safely.
05/11/2017, 3:13 PM – ICE Carol:
05/11/2017, 3:13 PM – ICE Carol:
05/11/2017, 3:13 PM – ICE Carol:
05/11/2017, 3:13 PM – ICE Carol:
05/11/2017, 3:21 PM – ICE Carol: We are here room with a view.
05/11/2017, 3:25 PM – Mum: Well she looks v chirpy which is really gr8. Xx
05/11/2017, 3:26 PM – ICE Carol: She is asking if anyone could visit today? Then would like nobody tomorrow when she has her op.
05/11/2017, 3:30 PM – Mum: Yes we can come if she wants. Just having quick bite & we’ll come. Can u give us the Post code? We will just come 4 1/2 hr cos of Kale going 2 school 2moro. Where will we find u? Xx
05/11/2017, 3:39 PM – Lynne Davis: Brave girl!! What time is visiting? Aidan coughing so canâ€™t bring him but I could get there possibly about 5pm xx
05/11/2017, 3:58 PM – Armand Faasen: The visiting hours are from 8 in the morning till 8 at night.
05/11/2017, 4:09 PM – Armand Faasen: It is SW17 0QT. Pinkney ward in the main building on the fith floor.
05/11/2017, 4:11 PM – ICE Dad: Thks Armand. Just going thru G/Ford. C u just now.
05/11/2017, 4:16 PM – Armand Faasen: Please can someone just get Carol some juice as I only got the message when on the ward.
05/11/2017, 4:18 PM – ICE Dad: What juice would she like? We at garage now.
05/11/2017, 4:18 PM – Armand Faasen: Just some diet coke will be great thanks.
05/11/2017, 4:19 PM – ICE Dad: Ok will do.
05/11/2017, 4:19 PM – Armand Faasen: Thank you.
05/11/2017, 4:20 PM – ICE Dad: No problem.
05/11/2017, 5:06 PM – Lynne Davis: Best place to park? Xx
05/11/2017, 5:08 PM – Armand Faasen: Just parked in the car park. Not sure about parking.
06/11/2017, 2:50 PM – ICE Carol: She is in. She was very brave. Didn’t have gas just put milky liquid in her cannula. So now we wait.
06/11/2017, 3:05 PM – Mum: At last. Poor little thing having 2 wait so long. Thnkng of u all & hope this op doesn’t take long. Love u all.
06/11/2017, 4:22 PM – Lynne Davis: Let us know when sheâ€™s out xx
06/11/2017, 4:24 PM – ICE Carol: Just waiting taking longer than we thought. But we had a chat with the consultant and know a bit more about Chemo, treatment etc.
06/11/2017, 4:25 PM – Mum: Well I guess that must help u a bit. Xx
06/11/2017, 4:25 PM – Kim: Shame. The gas is horrid remember it from when I had my tonsils out.
06/11/2017, 4:28 PM – ICE Carol: Didn’t have gas just put anaesthetic into her cannula. She just slowly closed her eyes. But want her back now. This is the shit part when you are not there and don’t know.
06/11/2017, 4:31 PM – Lynne Davis: I did wonder as I left if they may use her Cannula as obviously Jordan didnâ€™t have one at that point. I had a coffee while he was out as in good hands in theatre. Surrounded by a whole team! I had to walk myself down to theatre at st Georgeâ€™s, get on bed and then be injected which I was not good. Going in asleep is better. What did he say about chemo etc? Xx
06/11/2017, 4:32 PM – Mum: Know how u feel Carol, helpless & out of control. Xx
06/11/2017, 4:40 PM – ICE Carol: It’s a Lady. She got wheeled in and climbed on bed then did anaesthetic like you. But play therapist had been this morning and showed her photographs of it where she was going and we saw a doll with Hickman so she could feel it etc.
Chemo starts Wednesday, will have 3 doses everyday for first four days. Then twice a day for ten days. Will probably need tube in her nose which she really didn’t want but it is because the chemo will affect her lining in her mouth and throat so won’t want to eat. And chemo suppresses appetite. No steroids with this one. After month another bone marrow hopefully she will respond well and then probably for more treatments month long with stays in hospital. But may have a few days at home in between depending on how she responds
06/11/2017, 4:51 PM – Mum: It certainly sounds intensive but at least she will have a little respite. Xx
06/11/2017, 4:51 PM – Lynne Davis: Good news therapist came. It helps to know as not so frightening then. More control. Poor noonoo having to go in awake. Itâ€™s a bit scary seeing the sterile environment. Ok so will that happen at georgeâ€™s or Marsden on wed? And will she have to go back and forth for bone marrow harvest? It will be keeping infection out that is key. I think I may have picked up Aidanâ€™s cold as he coughed all over me last night and I am feeling a bit scratchy throated. I have ordered a bottle of aloe gel for us all to keep our immunity up. Arrives sat so will distribute accordinglyðŸ˜Š big hugs xx
06/11/2017, 5:18 PM – ICE Carol: She is back bit disorientated but has eaten some fruit and all good so far.
06/11/2017, 5:37 PM – Lynne Davis: Good to hear back and eating . Once she sleeps more I am sure she will be more orientated again. Well done Bryony!! Xx
06/11/2017, 5:48 PM – Kim: Glad she’s OK. Hope you are too!!
06/11/2017, 5:52 PM – Lynne Davis: Did they do the port? Any idea when results of lumber puncture? Xx
06/11/2017, 5:54 PM – Mum: So glad she’s back & hope she feels bit better soon. Give her a big hug from me. Xx
06/11/2017, 7:54 PM – ICE Carol: All good Izzy was here so she is now all bright and having something more to eat. Hickman in cannulaes out. Lumbar puncture and bone marrow result before end of week. X
06/11/2017, 8:15 PM – ICE Carol: Hickman bleeding nurses just changing dressing. Being really grown up about it all.
06/11/2017, 9:42 PM – Lynne Davis: Such a brave little lady! Xx
07/11/2017, 8:45 AM – Lynne Davis: Whatâ€™s happening this afternoon? I am wondering about popping in and saying hi but I am anxious I may have germs. Not full on sick or anything but now hyper aware and possibly sore throat. Maybe best if I come and just get you and manti a drink and stick my head into Bryony xx
07/11/2017, 8:58 AM – ICE Carol: Hopefully we are moving back to Marsden at 3. But that means anytime after three and may not happen going on experience so far. She is asking who is coming today and would like visitors but says I need to say she maybe sleepy. Should be straight fwd day today. But her cuts are bleeding quite a bit.
07/11/2017, 8:59 AM – ICE Dad: Ted we spoke to Carol and Bryony this morning. She was given morphine last night as the pipes were sore. She slept through but says itâ€™s sore this morning. Itâ€™s an easy day today with an ECG etc and then they are moving back to Royal Marsden. The problem is it could be late this afternoon depending on ambulances, so Carol is going to let us know later, but it may be too late for us to go up as Kale has school. Regards the germs you had better get yourself one of those face masks the Ching Chongs use!!!!!
07/11/2017, 1:28 PM – Lynne Davis: Just coming off A3 xx
07/11/2017, 1:28 PM – Armand Faasen: Ok.
07/11/2017, 1:29 PM – Lynne Davis: Of course you know Today the ambulance ðŸš‘ will be early
07/11/2017, 1:31 PM – Armand Faasen: No still wait to do scan of cardiovascular system.
07/11/2017, 2:11 PM – Lynne Davis: Still room 11
07/11/2017, 3:55 PM – ICE Carol: Staying here tonight again. Haven’t had echo yet. Not sure where the lady is she seems to have gone awol. If it doesn’t happen today then may have it at Marsden or a day trip to another one.
07/11/2017, 4:29 PM – Mum: Oh shame . All this waiting is so frustrating isn’t. Thnkng of u all. Love
07/11/2017, 4:30 PM – ICE Carol: Don’t think it is going to happen today. Xx
07/11/2017, 4:32 PM – Mum: In that case will they still move her back 2 Marsden or do u have 2 stay there till it’s done ? Xx
07/11/2017, 4:40 PM – ICE Carol: Back to Marsden in morning then will organise it there or at another hospital.
07/11/2017, 4:48 PM – Mum: Oh ok. Hope u all holding up alright. Jean came 4 cuppa & sent u all love. Not sure about cing Jorgie depending whether u want us 2 come up there so u’ll have 2 let us no 2moro. A parcel did come ex Amazon 2day so u’ll have 2 let us no what u’ve got Jordan so we can check. Xx
07/11/2017, 10:16 PM – Lynne Davis: How was Bryony tonight after transfusion? Xx
07/11/2017, 10:47 PM – ICE Carol: She is OK. Had morphine for pain and help her sleep. Had her little friend Amy which was lovely. Had a bit of a rough time cause had to change dressing again. But she was really brave. Just looked at her lying in bed chatting to me and felt really sad. But trying to think about just today and tomorrow and know she will be strong and get better. But in the back of my mind I am pleading and praying that she does. Can’t even think about it. Soo unfair!!
07/11/2017, 10:53 PM – Mum: I know Sweetheart, we all feel the same. & wish we could change places. So sorry 2 hear about rough patch this evening but they r 2 b expected. We all with u every step of way if that helps at all. Love u Poppet. Xxxx
07/11/2017, 10:55 PM – Lynne Davis: One day at a time like you say. Just small steps. You are all very brave! Not fair at all. And the next week will be tough as she starts chemo but thatâ€™s the start of the fight! Here we go!!! Brave little lady, brave mummy and daddy. Here if you need us even for a cry, shout, scream. Love you xx
07/11/2017, 10:59 PM – Kim: Bloody unfair!!!!! Doesn’t make any flipping sense at all!!! We are all in it with you all!
07/11/2017, 11:01 PM – ICE Carol: Thanks. Just feel so helpless and what if it doesn’t work. What will I do then??
07/11/2017, 11:04 PM – Mum: That thought occurs 2 us all but u must b positive & not worry about something that ISNT going 2 happen. Xx
07/11/2017, 11:06 PM – ICE Carol: I keep telling myself that but we don’t know that!!
07/11/2017, 11:07 PM – Kim: It just has to work!!!
07/11/2017, 11:07 PM – Mum: I know Poppet but we must just believe it. Xx
07/11/2017, 11:10 PM – ICE Carol: I know I know…. it will cause she is so amazing and so brave. It’s just soo unfair. Xx
07/11/2017, 11:12 PM – Mum: So so true. Xx
07/11/2017, 11:12 PM – Kim: Very!!
07/11/2017, 11:22 PM – Lynne Davis: We have to trust and believe in science and medicine. Itâ€™s worked before itâ€™s got to work again! Big hug xx
08/11/2017, 7:56 AM – ICE Carol: Happy Birthday Jordie!! Have a great day we will face time later! Lots of love Bryony and Carol x
08/11/2017, 7:58 AM – ICE Carol: Ambulance here on our way. Xx
08/11/2017, 8:24 AM – ICE Dad: Great we are happy there on time for once. First good vibe now itâ€™s positive all the way. We will be up there later. Cu guys. Love Grandad
08/11/2017, 8:38 AM – Lynne Davis: Good luck today! Will face time when Jordie Home xxx
08/11/2017, 9:12 AM – ICE Carol: We are back. Best trip out of all three.
08/11/2017, 9:15 AM – Armand Faasen: Are you in the same bed.
08/11/2017, 9:15 AM – ICE Carol: Yes I am.
08/11/2017, 11:10 AM – Kim: Glad the move back was good.
08/11/2017, 12:37 PM – ICE Carol: Change of plan echo only Friday so nothing till then. X
08/11/2017, 12:45 PM – Lynne Davis: What no chemo?
08/11/2017, 12:48 PM – ICE Carol: No only start Friday have to do echo first.
08/11/2017, 1:01 PM – Lynne Davis: Gosh thatâ€™s hard to get ready and then they change it. Thinking of you xx
08/11/2017, 3:34 PM – Kim: Will pop up later with the kids
08/11/2017, 4:06 PM – ICE Dad: Kim I donâ€™t think that is a good idea. Traffic at that time is terrible so you wonâ€™t get back till 8 ish. Also Shannon is full of cold and we canâ€™t afford for Bryony to pick up anything now . Suggest rather we make a plan later over the weekend or so, and I will take you guys up. Dad
08/11/2017, 4:07 PM – Lynne Davis: I am sorry I canâ€™t come up either now as I am full of cold today! I was just about to write like Dad canâ€™t bring germs in. Hopefully by weekend boys will be better but will keep FaceTiming. Xx
08/11/2017, 4:08 PM – Kim: Wasn’t going to bring Shan just Littlies
08/11/2017, 4:12 PM – ICE Dad: Yes but if ones got the rest may have the germs. Not a good plan
08/11/2017, 4:20 PM – Kim: OK will face time instead
08/11/2017, 5:35 PM – ICE Carol: Soryy didnt reply earlier had a snooze. Cause was awake from half four as Bryonys Mr Buttons was beeping. Luckily didnt wake her up. Good plan about face time she loves her new phone and ipad little fiend on that. Been messaging her friends all afternoon even a BOY!! Xx
08/11/2017, 5:36 PM – ICE Carol: Sorry not soryy
08/11/2017, 5:38 PM – ICE Carol:
08/11/2017, 5:53 PM – Kim: What is her number. Glad you had a rest!!!
08/11/2017, 5:58 PM – ICE Carol: 07757226486
09/11/2017, 8:47 PM – Lynne Davis: How you doing Carol and Manti? Am thinking of you- let us know if you need anything? Sorry canâ€™t come up with my cold. Is the echo still on for tomorrow? Xx
09/11/2017, 8:51 PM – ICE Carol: Yes at 10. Our ambulance arrives at about 9. Don’t worry re coming we really understand. Kale is taking stain I think so am going to try to make it home this weekend to spend some time with him. Xx
09/11/2017, 9:15 PM – Kim: Hope it all goes as planned and you don’t have to wait. Poor Kale, will do a play date with him around your visit.
09/11/2017, 9:20 PM – Lynne Davis: He is always welcome at ours. Is he going to gymnastics? Xx
09/11/2017, 9:21 PM – ICE Carol: Yes A going to take him. Then I think I may try Saturday night at home and take him to hockey Sunday. What time is Jordies party?
09/11/2017, 9:24 PM – Lynne Davis: 2:30-4:30pm and he is really welcome. Aidan will have a friend who Kale played with at bonfire last week so he wonâ€™t be only big person thereðŸ˜‰.xx
09/11/2017, 9:27 PM – ICE Carol: OK well think he may come through to spend day with us but thanks we can maybe drop present in or something. X
10/11/2017, 11:02 AM – ICE Carol: All done heart strong!!!
10/11/2017, 11:40 AM – Lynne Davis: Of course it is, well done for another trip and change. When do they start chemo today? Thinking of you all. Will send cake!! Xx
10/11/2017, 12:20 PM – Kim: Great news!!
10/11/2017, 1:03 PM – Mum: Brilliant news not that we ever doubted it. Don’t 4get 2 let us no re this pm
10/11/2017, 2:25 PM – ICE Carol: Don’t come tonight mom. It’s too much all the time for you two and Kale. He can come tomorrow.
10/11/2017, 2:27 PM – Mum: Ok but Dad did say we’d come if u sd it’s ok cos it’s no problem 4 us. We happy 2 come so it’s entirely up 2 u. Xx
10/11/2017, 2:33 PM – ICE Carol: Don’t worry mum let him have sometime at home. Bryony is going to have her first dose of chemo tonight and both Armand and I are short tempered cause Dr has put wrong thing on note so won’t get paid if we don’t get it change all these people are just arse holes.
10/11/2017, 3:04 PM – Mum: Ok Sweetheart. We’ll c u 2moro. Hope treatment goes ok. Do u want us 2 do anything about Doc? Xx
10/11/2017, 3:07 PM – Armand Faasen: No thanks mum I will phone them later again. Otherwise I will have to go in on Monday morning.
10/11/2017, 3:08 PM – Mum: Ok fine Armand. Xx
10/11/2017, 5:25 PM – Lynne Davis: Oh no what the doc in terms of your being off work? X
10/11/2017, 5:40 PM – ICE Carol: Armand sorted it getting another one on Monday. Xx
10/11/2017, 6:48 PM – Kim: Glad its sorted!!! Great job, Armand!
10/11/2017, 7:17 PM – Lynne Davis: New Gp me thinks!! Xx
10/11/2017, 7:30 PM – ICE Carol: Yip. Xx
10/11/2017, 7:52 PM – Lynne Davis: How you holding up Carol? Are you getting any sleep? Xx
10/11/2017, 9:07 PM – ICE Carol: Yip sleeping ok and getting a nap in when Armand gets here too. So I am fine. We met the psych today seemed a bit vague. But she is coming back next week so we will see then. How you feeling? How was the rest of your week?
10/11/2017, 9:08 PM – ICE Carol: Still waiting for them to bring chemo so Armand waiting with us to hear what they say. But don’t know if it will be tonight seems so slow but guess I am just impatient.
10/11/2017, 9:22 PM – Mum: Oh shame Sweetheart. It’s a bit like catching a plane! !!! Hurry up & wait .
10/11/2017, 10:17 PM – ICE Carol: Here we go!! Two doses tonight.
10/11/2017, 10:19 PM – Kim: Shame. So late too. Thinking of you all!!
10/11/2017, 10:22 PM – Mum: Wow will she get any sleep? Poor little sausage. Xxx.
10/11/2017, 10:27 PM – ICE Carol: Do it while she sleeps. Goes in her bag. Might be feel sick after first one so giving her anti sickness twice too. Hold thumbs it’s a smooth as can be journey and it works super well!! Xx
10/11/2017, 10:31 PM – Mum: Will do. Will b thnkng of & praying 4 u all. Glad they treat the sickness strait away so hopefully it will wrk well. C u moro. Xxx
10/11/2017, 11:09 PM – Lynne Davis: Big love xxx
10/11/2017, 11:17 PM – ICE Carol: Had first dose of mitoxantrone and now over hour has her dose of cytarabine. She has thankfully gone to sleep. It is such a tiny amount must be really really strong. Feel like I am poisoning my little girl. This is the crappiest straw to be dealt. Can’t believe we drew it.
10/11/2017, 11:39 PM – Mum: Shame Poppet. Know how u feel but u must try not 2 get 2 down about it all . Xx
10/11/2017, 11:40 PM – ICE Carol: I know I am trying. How many doses of chemo did Jean have?
10/11/2017, 11:41 PM – Lynne Davis: Just remember itâ€™s the cure even though it is a poison. Poisons the cancer! Hang in there you are doing the right thing. Horrid straw none of you deserved. Xx
10/11/2017, 11:43 PM – Mum: I am afraid I don’t know, she didn’t say the other day & I have never asked. Can find out if u wish. Xx
10/11/2017, 11:43 PM – ICE Carol: Hanging in just have moment of down then pick up my head and move on. One foot in front of the other. Just a few wobbles along the way.
10/11/2017, 11:44 PM – ICE Carol: Doesn’t matter really. Just wondered.
10/11/2017, 11:45 PM – Mum: That is 2 b expected & is perfectly natural. Xx
10/11/2017, 11:45 PM – ICE Carol: I know. Thanks. X
10/11/2017, 11:46 PM – Mum: Xxxxx
10/11/2017, 11:51 PM – Lynne Davis: You are so amazing you are allowed wobbles. Xx
10/11/2017, 11:52 PM – ICE Carol: Thanks. Xx
11/11/2017, 10:31 AM – Kim: How are you all this morning.
11/11/2017, 10:38 AM – ICE Carol: Bryony is really tired and feeling quite down today. Don’t think visits are good today. X
11/11/2017, 10:43 AM – Mum: Oh shame the poor mite. Have been thnkng of her so much. When does she have 2 have nxt bout treatment ? Xx
11/11/2017, 10:53 AM – ICE Carol: Now. Three a day. X
11/11/2017, 10:55 AM – Mum: Oh dear!! Love u both so much always with u. Xxx
11/11/2017, 10:55 AM – ICE Carol: Thanks mum.
11/11/2017, 11:03 AM – Kim: Shame. OK let us know when she’s up for a visit. Thinking of you all.
11/11/2017, 11:05 AM – ICE Carol: OK thank you. Xx
11/11/2017, 5:40 PM – Lynne Davis: How you all doing?? Sending you strength and determination xx
11/11/2017, 5:43 PM – Armand Faasen: Bryony very tired and not feeling great due to temperature gone up to 39 and should 37.
11/11/2017, 5:47 PM – Lynne Davis: Presume they watch all that. Hopefully her body will start to tolerate it as it goes on xxx
11/11/2017, 5:49 PM – ICE Carol: Yip just they just seeing about paracetamol or antibiotics. Took blood for cultures. X
11/11/2017, 6:08 PM – Kim: At least they are jacked and on top of it! Hope she feels better quickly. ðŸ˜˜
11/11/2017, 9:22 PM – Armand Faasen: So here we are, daddy and daughter settling in for the night. Bryony is feeling little better and will be having her chemo at 11:00pm. Given daddy a lot of instructions for the night.
11/11/2017, 9:34 PM – Kim: Best you do as you are told daddy. 🙂 Hope you both have a good night.
11/11/2017, 9:40 PM – Lynne Davis: Hope tonight goes well and you all get some rest xxx
12/11/2017, 8:33 AM – Armand Faasen: Bryony had temperature during the night and this morning. They gave her some paracetamol to break it. She was awake to say morning, but has gone back to sleep.
12/11/2017, 8:35 AM – Lynne Davis: Oh bless her. Hopefully the temp comes down soon with the paracetamol. Best thing to just sleep. Hope you got some sleep too. X
12/11/2017, 8:56 AM – Mum: Poor little thing. Hope that helps her 2 brighten up again & that u r coping ok. Xxx
12/11/2017, 10:42 AM – Kim: Sleeps definately the best medicine. Hope she wakes up feeling fresh and without the temperature.
12/11/2017, 10:49 AM – Armand Faasen: Just had some more chemo.
12/11/2017, 10:51 AM – Mum: Ag shame, hope it doesn’t make her feel 2 bad yet. Xx
12/11/2017, 10:55 AM – Armand Faasen: They recon she might have another temperature.
12/11/2017, 10:58 AM – Mum: Oh dear but at least the paracetamol is able 2 control that.
12/11/2017, 11:09 AM – Armand Faasen: Yes and she is also having some antibiotics to make sure of no infection.
12/11/2017, 11:10 AM – Mum: That’s gd. C u later xx
12/11/2017, 3:37 PM – Kim: How’s Bryony feeling?
12/11/2017, 3:39 PM – ICE Carol: Good thank
12/11/2017, 3:42 PM – Kim: Is she up for a visit?
12/11/2017, 3:43 PM – ICE Carol: Not really
12/11/2017, 3:44 PM – Kim: OK no problem. The kids will whatsapp her then. How are you doing?
12/11/2017, 3:46 PM – ICE Carol: Good thanks
12/11/2017, 3:53 PM – Kim: Do you need anything?
12/11/2017, 5:21 PM – ICE Carol: No all good thanks had a night at home last night. Armand gone early tonight with Kale so he can get an early night. All about one day at a time. Thanks though. X
12/11/2017, 5:38 PM – Kim: If you do just shout!! One day at a time is still moving in the right direction!
12/11/2017, 6:23 PM – Lynne Davis: Hiya is Bryony up for a FaceTime? Xx
12/11/2017, 6:25 PM – ICE Carol: Busy talking to Izzy will let you know when she is off. Thanks for the cake. Xx
12/11/2017, 6:25 PM – Lynne Davis: OkðŸ˜€
14/11/2017, 6:07 PM – Lynne Davis: Bryony up for a cousin FaceTime? Xx
14/11/2017, 6:09 PM – Armand Faasen: Just speaking to Kale. Will let you know when done.
14/11/2017, 6:09 PM – Lynne Davis: Ok xx
14/11/2017, 7:30 PM – Kim: Hi. How’s Bryony feeling today?
14/11/2017, 7:47 PM – ICE Carol: She is feeling a bit better but always seems to at this time. She has had more blood today because her haemoglobin was low again but that is to be expected. Her temp. Has been better today but has been on the up this afternoon so we are just monitoring it. How you all ?
14/11/2017, 7:54 PM – Kim: Glad that she’s feeling a bit better. She’s doing so well!!! We all fine thanks.
14/11/2017, 8:09 PM – ICE Carol: Thanks
14/11/2017, 9:10 PM – Lynne Davis: Does she drop down to two doses tomo? Will she need tube in nose? Any news on results from last week LP? Sounds like last night was eventful with neighbour I do hope you all get sleep. Can we do anything at all? Xx
14/11/2017, 10:24 PM – ICE Carol: She dropped down today. L.P. we didn’t see the doctors at all today and haven’t seen the consultant either so on our list to ask hopefully tomorrow. Thanks Ted but can’t do anything just the nature of the Beast. X
15/11/2017, 5:19 PM – ICE Carol: Does anyone have a little reading light for me to borrow.
15/11/2017, 5:59 PM – ICE Dad: Ted I can organise one of mine, but just need to see where you are going to mount/put it, and where you plug it in. If itâ€™s OK with Princess, we will be up tomorrow, and when you show me Iâ€™ll organise it.
15/11/2017, 7:41 PM – ICE Carol: Just need a little light daddy cause at 7:30 I have to switch Bryonys cubical lights off then I can’t read or anything.
15/11/2017, 10:03 PM – Kim: My kids have a bedside lamp that you can use.
15/11/2017, 10:08 PM – ICE Carol: Thanks Kim can buy one for 5 pounds that just clips on the book. Been better tonight.
15/11/2017, 10:10 PM – Kim: You can get one that goes on your head too. I can see if I can find one if you want.
15/11/2017, 10:12 PM – Lynne Davis: I have a head torch you can have. Obviously you donâ€™t have to wear it on your head! Pretty but not that pretty. Howâ€™s B today? Xx
15/11/2017, 10:21 PM – ICE Carol: Having a good evening and night. Lying with me on my bed looking at pictures of Disney land. Having girly time. Temp. Normal so good at moment thanks. How you all. Head torch would be great if I can borrow it. Thanks. Xx
15/11/2017, 10:22 PM – Kim: Glad she’s having a good evening and that you are having girly time!
15/11/2017, 10:26 PM – Lynne Davis: I will find it and leave it out for Mum and Dad to bring up. I am on the mend but typically Jordanâ€™s class has just had a kid diagnosed with Scarlett fever. Will now have to watch him as donâ€™t want to bring that up as very contagious. I hope he will be fine. Oh bless her so pleased she is feeling a bit brighter. Xx
16/11/2017, 4:37 PM – Lynne Davis:
16/11/2017, 4:38 PM – Kim: Aah.That’s so sweet!
16/11/2017, 4:41 PM – Lynne Davis: Aidan wants to talk to Bryony is that ok Carol/Armand? Xx
16/11/2017, 4:41 PM – Lynne Davis:
16/11/2017, 5:16 PM – ICE Carol: Yes of course she is just eating. I’ll get her to face time. Xx
16/11/2017, 5:17 PM – Lynne Davis:
16/11/2017, 5:31 PM – ICE Carol: Oh Ady, you are very special. Thank you.!!
16/11/2017, 5:41 PM – Kim: So sweet!! You go Aidan!
19/11/2017, 1:35 PM – Lynne Davis: How you all doing Carol/Armand? Xxx
19/11/2017, 2:11 PM – ICE Carol: We are OK. I had a night at home last night with Kale which was nice for us two. Although he thought I was surprising him when we went to Lidl cause he saw the bird world sign. He looked over smiled at me and said Thank you mummy. I felt so shit when I said actually boy we are not going to bird world. I explained we would go when Bryony felt a bit better and he said that is ages it’s when Bryony is twelve. That’s two years.
Anyway can’t do everything just explained about Bryony needing us a little more now. And I loved him more than anything. Bryonys mouth is getting worse and she needs another transfusion today. She has also developed a rash I have asked the doctors to come and look at. So we will see. Xx
19/11/2017, 2:16 PM – Lynne Davis: Oh bless her thatâ€™s so awful. I spoke to someone the other day who said the mouth ulcers are the worst. Do dr not come everyday? So hard for Kale. Itâ€™s tricky but when he is older he will understand why you had to do what you doing. Heâ€™s welcome at ours whenever he wants a change. Xx
19/11/2017, 2:23 PM – Kim: Can imagine how sore her mouth is, shame. Poor Kale – he came and had a little play here yesterday, but is also welcome anytime!!!
20/11/2017, 1:13 PM – Lynne Davis: Aidan has raised Â£100! And we have a lot of pine cones to decorate this weekend. He is convinced the hospital needs an electric car so Bryony can get around. It will even have a side car for the drip stand. Always in our minds xxxx
20/11/2017, 1:16 PM – ICE Carol: That great news, thanks Ted. He has such an imaginative mind. What a super star.
20/11/2017, 1:17 PM – Lynne Davis: Just shows how much his cousin means to him xx
20/11/2017, 1:18 PM – Armand Faasen: Just said to Carol, he loves his cousin a great deal.
20/11/2017, 1:18 PM – ICE Carol: Ya funny. Would have known. He is very sweet. Xx
20/11/2017, 4:18 PM – Kim: Well I agree. An electric car with space for a drip is a super idea 🙂
20/11/2017, 4:26 PM – Mum: Very well done 2 Aidan. He really is a v enterprising little guy. What a star !!
21/11/2017, 2:04 PM – ICE Carol: Hi all Ted is going to ring to explain but we just saw the consultant and Bryonys results are back.
And she is on the high risk path. She has a rare form with cytogenetics so needs a marrow transplant or won’t fight it. So pissed off. Now have to wait if she goes into remission after this treatment and responds well then chances good we have one more aggressive chemo next round then bone marrow transplant. If not in remission then more chemo till in remission then bone marrow. No bone marrow transplant until Leukemia in remission or no point cause won’t work.
Feel really shit and down now. This is soooo unfair. Pixie really doesn’t deserve this at all. Xx
21/11/2017, 2:59 PM – Mum: U r soooo right Carol. We r all feeling yr pain & r with u all the way. Love u all so much. Xxx
23/11/2017, 11:41 AM – ICE Carol: Update no room of her own. Results back today say no infection. So we are staying put. Xx
23/11/2017, 11:51 AM – ICE Dad: Thatâ€™s good news that she has no lnfection but bad news that she isnâ€™t getting her own room. Stay strong we are going to make it. Iâ€™ve got a sore throat so scared to come up as donâ€™t want to make her sick. But if Kale starts getting board we will come up and Mum can visit and we will bring him back. Iâ€™ll stay in the car. Lots of love Dad
25/11/2017, 9:35 AM – Kim: How are you all today, Carol?
25/11/2017, 10:13 AM – ICE Carol: Had a wobble at about 1 o’clock. And could stop crying. Feel like the tears are sitting there today. We watched a movie last night together snuggled up was soo lovely when it finished the real world hit. So feeling very raw again. Stupid!! How you all did you have a party for Maddy?
25/11/2017, 10:38 AM – Lynne Davis: We will bring u two distractions today. I had the same feeling when we left the other night Carol- not stupid at all. Just a horrid horrid thing to have to go through. Be kind to yourself. Love you!!! Xx
25/11/2017, 10:41 AM – ICE Carol: Love you too.
25/11/2017, 10:43 AM – Mum: Oh shame Sweetheart. Perfectly understandable, thnk we all do but somehow we all have 2 b positive & believe everything will come right. We all love u all so much & thnk if u all the time. Xxx
25/11/2017, 10:48 AM – ICE Carol: I know mum. I am trying to be positive. I am telling myself. But just can’t help it the tears just keep coming. X
25/11/2017, 10:50 AM – Mum: I know it happens 2 me when I talk about her at times. Xxx
25/11/2017, 10:54 AM – Lynne Davis: Me too- tears are important too. Doesnâ€™t mean we are not positive but does mean we care and feel so sad for what she is having to manage. Xx
25/11/2017, 11:09 AM – Kim: I have had a few break downs with tears too. I totally agree Lynne!!!
25/11/2017, 12:09 PM – ICE Carol: Ted if you are coming maybe later this afternoon better as Amy and Jojoba two of Bryonys friends are coming up now or in next hour. Xx
25/11/2017, 12:10 PM – ICE Carol: Jojo not Jojoba???
25/11/2017, 12:19 PM – Lynne Davis: Yes thatâ€™s fine. Will aim for about 3:30 xx
25/11/2017, 12:22 PM – ICE Carol: Thank you. X
27/11/2017, 9:43 PM – Lynne Davis: How you all today? Xx
27/11/2017, 10:06 PM – ICE Carol: OK thanks. She has a rash which is apparently a reaction to the platelets. But otherwise all OK. You guys??
27/11/2017, 10:10 PM – Lynne Davis: Oh at least you know where it comes from. Did she manage to do any school room stuff today? Did you manage to get any distraction? Xx
27/11/2017, 10:11 PM – Lynne Davis: Is school meeting tomo did you say? Xx
27/11/2017, 11:19 PM – ICE Carol: No went for a walk outside and up and around the parking. Played pool etc. Wrote a few Thank you cards. Got mosaics tomorrow and then Elf on the shelf tea party. We’re suppose to have school meeting but they cancelled today because they have OFSTED in tomorrow so they say they will reschedule. We will see!
28/11/2017, 10:26 AM – ICE Carol: Temperature spike today for first time in over a week. X
28/11/2017, 10:39 AM – Lynne Davis: Oh bless her. What do they do about that? Do they know why or is it just something that can happen? Xx
28/11/2017, 10:43 AM – ICE Carol: Taking bloods to see if infection. Given her paracetamol to bring it down. Xx
28/11/2017, 10:43 AM – Lynne Davis: Keep us updated xxx
28/11/2017, 12:25 PM – Kim: Oh no!!! Hope she feels better and that its not an infection
28/11/2017, 12:27 PM – Mum: Oh poor little sausage. Do hope it’s just something that can happen & not an infection. U certainly don’t need that. Give her a big hug from me. Love u all. Xx
29/11/2017, 9:14 PM – Kim: How’s Bryony doing today?
29/11/2017, 9:20 PM – ICE Carol: She is OK thanks. Had an up and down day. Not a great morning had sore tummy and then headache and needed to ly down. But she had an ok afternoon and then evening till about 8 when she wanted to ly down. So she is now watching a movie. She had a temperature spike again after lunch. Has a very sore gum at back of mouth. She thinks her tooth maybe trying to come out. We asked nurse and said she would check with dr. But we will have to do it in the morning. But otherwise seems OK.
29/11/2017, 9:21 PM – Lynne Davis: No infection or they not sure? Give her a big kiss xx
29/11/2017, 9:22 PM – ICE Carol: Not sure. Can’t find anything and she is still covered with antibiotics etc. Never know might be different news tomorrow.
29/11/2017, 9:23 PM – Lynne Davis: How you hanging in with neighbours? Xx
29/11/2017, 9:33 PM – ICE Carol: Got different older neighbours so better so far.
29/11/2017, 9:34 PM – Lynne Davis: Oh good thatâ€™s nice to hear!! Long may nice neighbours last. Love you
29/11/2017, 9:35 PM – ICE Carol: Yip that’s what I think too. Love you too. Xx
29/11/2017, 10:02 PM – ICE Carol: Temperature spike again.
29/11/2017, 10:05 PM – Lynne Davis: Oh no! Poor little lady. Hopefully they can get it down with paracetamol quickly. Sounds like you might have another long night. Thinking of you. Tony and I sitting making crafts for Aidanâ€™s stall. Looks like Aidan made it to be fair- never was talented in the artistic capacities. Thinking of you xx
29/11/2017, 10:28 PM – ICE Carol: We will be good. Paracetamol works quite quickly. Glad you are having fun. Bryony and I are having a giggle. ðŸ˜‚
29/11/2017, 10:40 PM – Mum: It’s probably just as well they look like Aidan made them as it’s his stall. Mite make the people put their hands in their pockets a bit quicker cos of his initiative!!!! Sorry 2 hear about Bryonys problems Carol, do hope 2moro will b bit better. Lots love 2 u both.
29/11/2017, 10:44 PM – Kim: I’m sure they’ll be a hit Lynne;-) Hope You and Bryony have a good night, Carol
29/11/2017, 10:57 PM – Lynne Davis:
29/11/2017, 10:57 PM – Lynne Davis:
29/11/2017, 10:57 PM – Lynne Davis:
29/11/2017, 10:57 PM – Lynne Davis:
29/11/2017, 10:59 PM – Mum: They look lovely Lynne. Well done 2 all of u. Xx
29/11/2017, 11:31 PM – ICE Carol: Bless him they look good. Well done. How much are they?
29/11/2017, 11:35 PM – ICE Carol: Hello
They look amazing I wish I could help.
Love from Bryony.
30/11/2017, 12:21 AM – ICE Carol: New girl, Spanish? Noisy!! Been to complain to put t.v. off. Now talking to each other (whispering obviously not an option??) Bloody hell.
30/11/2017, 12:24 AM – Mum: Oh shame Carol. What a blow especially as u’d just sd it was quiet 4 a change. Xx
30/11/2017, 6:52 AM – Kim: That’s selfish!!! Ridiculous.
30/11/2017, 9:17 AM – ICE Carol:
30/11/2017, 9:08 PM – Kim: Love it. Froze to death on the side of a soccer field this pm
30/11/2017, 9:31 PM – Mum: Shame Kim. That’s the problem with being a conscientious Mum. Xx
30/11/2017, 9:56 PM – Kim: â„â›„ðŸ˜ƒ
01/12/2017, 10:29 AM – ICE Carol: Pix rubbish today. Temperature 39 just giving her paracetamol.
01/12/2017, 11:01 AM – ICE Dad: Shame did she not sleep well last night? Hopefully her temp will drop back down and she will feel more cherpy. At least you are nice and worm itâ€™s freezing out today. Lots of love and a big hug. Talk to you later. Grandad
01/12/2017, 11:06 AM – ICE Carol: She talked all night in her sleep and got in with me at about 4:20. Cause she was feeling rubbish and nurse said she spike about then too. Took more blood to test and culture but nothing seems to come back positive. So don’t know what is going on. Asked for our own room again but don’t think that is going to happen. So we just keep going I guess. One day at a time. Speak later. X
01/12/2017, 11:17 AM – Mum: Oh poor little mite. Thnkng of u both & sending lots of love & hugs. Do hope the paracetol does the trick but wish they could find problem. V frustrating 4 u . Xxx
01/12/2017, 9:58 PM – Lynne Davis:
01/12/2017, 10:21 PM – ICE Carol: Wow. Makes me cry!! Temp. Down now up again. !! Just having more paracetamol. And going to sleep with the hope tomorrow is better. Good luck tomorrow Aidan!!@
01/12/2017, 10:23 PM – Lynne Davis: Hope tomorrow better too. Xxx
01/12/2017, 10:38 PM – ICE Carol: ðŸ‘ðŸ’•
02/12/2017, 12:33 PM – Kim: Aidan doing well at his stall!!
02/12/2017, 12:33 PM – Kim:
02/12/2017, 12:48 PM – ICE Carol: That’s good news!! You go Aidan. Shannon looks happy to be there helping.
02/12/2017, 12:51 PM – Kim: That’s her picture pout ðŸ˜‚
02/12/2017, 1:02 PM – ICE Carol: Well looks like she is pissed off with being there.
02/12/2017, 1:15 PM – Kim: No she’s quite happy. Has now taken over while Aidan goes to a science demo.
02/12/2017, 1:16 PM – Kim: Was just posing.
02/12/2017, 6:38 PM – Mum: Yr stall looked amazing Aidan. How did yr day go? Was it good? Xx
03/12/2017, 10:48 AM – ICE Carol: Had a chat to doctor this morning and makes sense she says. Her counts are starting to come up but that means body starts to fight any infections that were around when her counts were down. Plus she is getting an antibiotic for her mouth which makes them feel shitty. But hopefully a few tough days and then she will start to feel better. Xx
03/12/2017, 11:38 AM – Mum: Well that snds hopeful & do hope she starts 2 feel better really soon, poor sausage. Xx
03/12/2017, 1:25 PM – Kim: Good news that her counts are coming up, pity about feeling bad because of it. We were going to come up and visit this arvi. Is she up for that or not?
03/12/2017, 1:50 PM – ICE Carol: Yes, She has a friend coming in a minute. Mom and dad coming and Ted and Tony but you welcome.
03/12/2017, 2:12 PM – Kim: Ok . Perfect!!!
03/12/2017, 4:50 PM – Lynne Davis: We in our way now. Do you want anything? Milkshake? Xx
03/12/2017, 4:50 PM – Kim: Carol says no thanks.
06/12/2017, 4:52 PM – ICE Carol: Very excited little lady in back of car. For her outing. Watching school nativity and back to hospital. Xx
06/12/2017, 5:02 PM – Mum: That’s lovely. C u shortly. Xx
06/12/2017, 5:14 PM – Lynne Davis: Hope it goes well x
06/12/2017, 5:31 PM – Kim: Very exciting. Enjoy!!
06/12/2017, 9:37 PM – Lynne Davis: How did it go? Xx
06/12/2017, 9:40 PM – ICE Carol: It was good. Bryony had a good time and Kale was very excited to have us there. If all now goes to plan we could go home for the weekend. Xx
06/12/2017, 9:52 PM – Lynne Davis: ðŸ¤žðŸ»xx
06/12/2017, 9:52 PM – Lynne Davis: Glad Kale enjoyed it too. Xx
06/12/2017, 10:31 PM – Kim: Glad, Bryony enjoyed it and that Kale had you guys there. That will be great.
07/12/2017, 4:42 PM – ICE Carol: All on track to head home tomorrow. Fingers crossed we get there. X
07/12/2017, 4:45 PM – Mum: That’s gr8 news Poppet. Have my fingers crossed. Xx
07/12/2017, 4:46 PM – Kim: Yay. Till when?
07/12/2017, 4:50 PM – ICE Carol: Not too sure have bone marrow on Monday but at moment coming in as day patient on Monday then home back on Thursday to start new chemo. for five days. But shitting myself to find out if her Leukaemia is in remission cause dont know what I will do if it isnt. Xx
07/12/2017, 6:16 PM – Kim: We are all hoping and praying that she is in remission. Have to be positive!!!!
07/12/2017, 7:02 PM – Lynne Davis: I know itâ€™s hard but keep focused one day at a time. Xx
07/12/2017, 7:25 PM – Mum: Yr sisters sd it all except seeing as she has 2 have 2nd lot chemo, if she isn’t in remission now maybe that will do trick ? Xx
07/12/2017, 7:35 PM – ICE Carol: Doesnt work like that mum. If it is responding but not as well as it should then they can do different one. If not responding dont know what they will do. But every hurdle makes the journey more trick and more difficult.
07/12/2017, 7:37 PM – Mum: Oh ok now I understand. Thks. All being well c u both 2 moro. Love u. Xx
08/12/2017, 7:47 PM – Lynne Davis: So could have much worse day. Aidanâ€™s behaviour at school has deteriorated like every other year at this time which we have told them about. Rachel then took Aidan out of class to speak to him about being tired. Somehow it led to him telling her he gets â€œstrong African Mutiâ€ to go to sleep every night and she passed it in as safeguarding. Tony called in and got cross about it all, to which head of pre prep said his story had inaccuracies and wasnâ€™t explaining fully. Then she said that if the incident where Aidan lashed out at the boy who was teasing him if it had caused injury it would have been gbh! So now we are having to justify our actions of giving Aidan Muti when he has pain although I think Emma has just given it a few nights, giving Jordan Muti under prescription and pointing out the criminal age is 10! Could lose my job and Aidan just says what he thinks people want him too. I hope you got home ok With Bryony and you have a good weekend xx
08/12/2017, 8:11 PM – Kim: Oh no, Teddy. That really is too bad!! People do seem to jump to conclusions without listening to the whole story.
08/12/2017, 8:12 PM – ICE Carol: Oh Ted, dont really know what to say except that the teachers at that school seem to be twits. She doesnt know what she is talking about. They cant stop you giving your children medicine and to be honest you know more than all of us but that is not a safe guarding issue as far as I know. Also the GBH. She is talking out her ass I have had much worse as you know had CAMHs, Social Services involved and none of it was seen as more than a little boy who was coping his older sibling. They havent got a leg to stand on really. If they did they would have had to phone MASH today/ this evening for advice and you would have had a call to explain your side which I am assumkng you havent. And in any case boy teasing him needs dealing with too. As in away Aidan was defending himself. Maybd didnt choose the correct way to do it but he is six and at that age all childrens hads work faster than their words. Having said all that it doesnt make any of it better and I know what ig feels like worrying about your job anx career disappearing. Try not to worry the school are not going to follow it up it is too much work and I am sure if they phoned for advise they would get told to document it in the event there is a pattern. Why was Rachel talking to him about being tired anyway? You cant do that with children. Yes we are home lying on my bed with my two on either side really lovely. Ted thinking of you. Hope it blows over and that lot of twits get off your case. All children are tired at this time of year. Dont need to be Shurlock Homes to work that out just go into any school. Thinking of you. Xx
08/12/2017, 8:13 PM – Mum: Oh shame Lynne. These teachers certainly blow everything out of all proportion. It’s all a terribly difficult situation, what r u going 2 do? Xx
08/12/2017, 8:13 PM – ICE Carol: * Copying not coping
08/12/2017, 8:15 PM – Kim: True. My class are exhausted. Two long half terms, Xmas fairs and plays. Tiring for us adults kids definitely find it hard.
08/12/2017, 8:15 PM – ICE Carol: *Hands not hads. Sorry really bad typing and didnt read back first.
09/12/2017, 7:59 AM – Lynne Davis: Am I right in thinking I can have access to his school records? I seem to think with freedom of information I can? I hope so as have said I want it! Donâ€™t know what I will do. I have written an email statement about the analgesic we use for Aidan in line with paed/Gp regime for his pains. (Unfortunately I think Em has used it more than we would like from what Aidan has said so have now removed it – wonâ€™t tell them that) I have written about Jordanâ€™s too as that will be next! I did say Dr Rust was aware of stopayne initially which is true as first time I asked you to get a prescription I seem to remember Mum but was about 5years ago. Having said that but is not a controlled drug so they canâ€™t say anything and that we have told paed we use for Jordan and she was fine. I then laid into them about being prejudice as if he had said â€œcalpolâ€ or English medication I donâ€™t believe they would have taken it as seriously and I write about how inappropriate it was to label his behaviour as criminal as the legal age is 10 in the uk as children donâ€™t have enough understanding before then. I laid into them about me telling them every year this is a difficult time for Aidan with change in routine , decrease pe so less regulation and they have taken away his sensory box. I also said that we will think about what we do about people being in loco parentis and having the belief that his behaviour is criminal. I have said we want to know what they are doing with the information, and I want to see the records to see how it has been documented. What do you think? Xx
09/12/2017, 7:59 AM – Lynne Davis: How was Bryonyâ€™s night carol? Xx
09/12/2017, 8:13 AM – Armand Faasen: You have all the right to ask Ted. Maybe say yoir brother in law is SA witch doctor and he will be coming for them next (he he). They will have to jump through a hell of a lot of hoops to prove things Ted and they will have tp have documentation to state that they have informed you at all times. Seems to me they are just out to get you guys. You need to tell Rachel to wind her neck in as you to get SA that is the same as calpol. Seems to me it time we go and buy and island and start our own country. Bryony had a good night. They are all still sleeping as we had a family TV session on our bed till late. She didn’t even get up in the night. I think she is just happy to be home.
09/12/2017, 8:25 AM – Lynne Davis: Oh bless her thatâ€™s great. Good to hear you all had time together. It does feel they are out to get us but not sure where to go with boys. Donâ€™t want Jordan to have to change twice in two years and our feeder is Waverley which is just so big now and I have clients there so I know they have issues! Xx
09/12/2017, 8:48 AM – Armand Faasen: No need to find the boys a new place as the school knows them. Surely for the fact that you pay your fees, they should now be able to adapt the curriculum and know how to deal with them. All boys are the same and don’t like to be teased and surely as a teacher or a person working with children they should know all children reacts to teasing. Looks to me like they just want your money and have an easy life. Stuff them, keep the boys there. The staff needs to change their attitude.
09/12/2017, 10:08 AM – ICE Carol: I agree with Armand. And yes you have a right to all records and the origional statement as it was written down by Rachel should just state his exact words. You and Armand are right to stopyne is the same as calpol and if he had said he was given calpol they wouldnt have batted an eye lid. I would explain about Dr Rust or any of that. I dont think, it has anything to do with them and it just gives them information they dont understand and dont know what to do with. I also dont thing I would say anything about Jordie. Jordie is a total different Kettle of fish and also the less they know about your family the better really. Dont explain anything you dont have to. You have done nothing wrong Ted. Dont explain how or why or anything. The GBH thing I would say what you have said because that is a load of bullshit and was just a 6 year old altercation in scho that their behaviour policy should state what their procedures. That is all they should have followed and done. I am sure Rachel taking him out and asking him why he is tired is NOT part of their policy. Also they know he is also trying to process all this about Bryony to and so that would affect his sleep they need to wind their necks in they csnt do anything Ted all they can to is document it and ask for advice. You ok? Are you working?
09/12/2017, 10:31 AM – Kim: I’m not sure about Rachael taking him out at all. Surely unless a child seeks you out to speak to I’m private you can not take them out without someone else listening too. Stoypaynes recipe was changed when shan was a baby and is now just like panado or calpol. It is bought over the counter and I’m sure a pharmasist here could look at the label and tell you its equivalent here. Carol is right. Only answer their questions. They will read into anything you say seems like. As for the physical incident…why did it escalate with out a member of staff noticing till it got that far, sounds like the school wasnt fulfilling their duty of care. If Aidan is so bad why is he not constantly watched, unobtrusively of course, to make sure that there are no problems.
09/12/2017, 12:17 PM – Lynne Davis: Thanks probably said too much already unfortunately but appreciate all the advice. Will get verbatim records Monday. Loving the school not meeting their duty if care as that will wobble them. I think the problem is Tony is so mad now and feels like we are targets that he doesnâ€™t want to keep boys at Barfield. Will see when things calm. I am thinking I will only deal with headmaster and head of safeguarding in future ( as she is more balanced from what I can see) than the head of pre-prep who I canâ€™t stand as she is superficial two faced and condescending. Two weeks ago at parents evening she said he was doing well, a bit sparky but no concerns. Itâ€™s the â€œmutiâ€ thing they have got their knickers in a twist about and unfortunately Tony isnâ€™t as clear as me on the medication/health with boys so he got a bit angry and in their words inconsistent in his responses. I think it is racist and stepping above their station but I have to be careful too. If I was drugging him he wouldnâ€™t be tired!!!! Xx
09/12/2017, 1:03 PM – Kim: How do they even know what multi is? I used the word when talking to Sarah about cough syrup and she didn’t know what I was talking about. Its the same as calling trousers, pants. A South Africanism so they didn’t understand and jumped to conclusions.
09/12/2017, 2:36 PM – Lynne Davis: Thatâ€™s what I am saying. They viewed it through their British eyes! And Rachel of all people will know muti is associated with witch doctors. Like I would go and throw bones and give herbs. X
09/12/2017, 2:37 PM – Kim: Haha. Yes that’s what all Africans do!!!
09/12/2017, 3:23 PM – ICE Carol: She would!! Hee hee. X
10/12/2017, 11:28 AM – ICE Carol: Hey Ted how you doing today?
10/12/2017, 12:02 PM – Lynne Davis: Ok today very worried about tomo when they are all back working. Guessing they will respond tomorrowðŸ˜¬
How are you all? B ok since being home? Xx
10/12/2017, 12:04 PM – ICE Carol: Back at hospital waiting around for blood results. To see if we can go home for night.
10/12/2017, 12:05 PM – Lynne Davis: Oh I thought you were home til tomorrow. Did something happen? Or was it always plan to get bloods done? Xx
10/12/2017, 12:06 PM – Kim: Hope so Carol. Ted, don’t worry about it too much, nothing you can do until tomorrow anyway. Maybe you should sent Aidan up with a voodoo doll 🙂
10/12/2017, 12:10 PM – ICE Carol: No we always had to come in for bloods cause her platelets are low and can’t operate if that low. So may have to do a transfusion tomorrow morning before op. Which means we have to stay night.
10/12/2017, 12:13 PM – Lynne Davis: Ok I see. Let us know. Xx
10/12/2017, 2:54 PM – ICE Carol: Platelets needed. So waiting for plan either platelets today and early morning for full blood count before op. Or home early start for platelets and full blood count in morning or stay. Waiting for decision. Probably will be to stay. New room share with one other little girl. Hopefully only one night but Bryony says car trip makes her feel sick but I think the sickness is hunger.
10/12/2017, 3:00 PM – Mum: Oh shame Carol all the waiting is so frustrating. Is Kale ok or would u like us 2 pick him up? Xx
10/12/2017, 3:03 PM – ICE Carol: At the moment he is watching t.v. with his dad. So ok for now. Hopefully they will let us know soon what is going to happen so we can unpack the car and then Armand and Kale can head home.
10/12/2017, 3:05 PM – Mum: Ok Poppet. Will wait 2 hear. Xx
10/12/2017, 4:10 PM – ICE Carol: Plan now getting platelets. Then blood count in half an hour after that then we can go home. If she still feels ok etc. So just waiting for platelets to go up. Xx
10/12/2017, 4:13 PM – Mum: Ok Sweetheart. Hope it all goes well & Bryony feels alright. Keep us posted. Xx
10/12/2017, 6:44 PM – ICE Carol: On way home. X
10/12/2017, 6:46 PM – Mum: That’s gd news Carol. Go v carefully in this cold. Spk when u home. Xxx
11/12/2017, 10:53 AM – ICE Carol: She is in.
11/12/2017, 10:54 AM – ICE Carol: Determined to count and beat Jordie this time so got to 8. Xx
11/12/2017, 11:05 AM – ICE Dad: Thinking of the little egg. Hope all goes well. Cu tonight but be careful coming back. Itâ€™s been snowing since you left and a right royal shambles in Hill and Beacon Rd. Also seemed to be a problem up at Hindhead as Churt Rd was jammed solid.Battled to get Mum up to manormead and coming back had to leave the car in Wood Rd and walk home.lol Dad
11/12/2017, 11:14 AM – Armand Faasen: Just came out of procedure. Having something to eat. Very hungry.
11/12/2017, 11:36 AM – ICE Dad: Thatâ€™s good. Has she been allocated a bed, or are you guys in the day centre?
11/12/2017, 11:39 AM – Armand Faasen: Yes we are in the day centre in her own bed. Waiting to hear what is going to happen next.
11/12/2017, 11:42 AM – ICE Dad: OK well hopefully they will let you go shortly, but guess they have to make sure she is over the anasetic first. Cu
11/12/2017, 11:53 AM – Lynne Davis: ðŸ’• ðŸ’— ðŸ’• to you all. Xxx
11/12/2017, 2:00 PM – Mum: Love u 2 Sweetheart. C u later. Xxxx
11/12/2017, 2:04 PM – Mum: Sorry still applies but thought I was talking 2 Bryony. Xxx
11/12/2017, 2:04 PM – Lynne Davis: ðŸ˜€
11/12/2017, 2:05 PM – ICE Carol: Hee hee granny. We are nearly home. Xx
11/12/2017, 2:18 PM – ICE Carol: Just getting Kale. X
11/12/2017, 4:28 PM – Kim: Glad all went well today!!”!
11/12/2017, 7:06 PM – ICE Carol: Yip she seems ok. Complaining a bit of back pain but then not surprised. X
11/12/2017, 8:01 PM – Mum: Poor sausage hope it feels better soon. Xx
11/12/2017, 8:08 PM – Kim: Shame. Must be sore. Poor little might
13/12/2017, 1:47 PM – ICE Carol: Ideas for Kids Christmas presents please
Ted know you are in Lapland so may not fet this but let me know when you can. X
13/12/2017, 6:20 PM – Mum: Hi Carol. The same goes 4 u. I need 2 know what all the children want or need.!!!! Xxx
13/12/2017, 6:24 PM – ICE Carol: No chemo tomorrow bloods not right. So just meeting.
13/12/2017, 6:28 PM – Mum: Oh sorry 2 hear that. Meant 2 ask in earlier text but slipped this muddling mind of mine. Does that mean the 3 of u have 2 go up 2 hospital & then come strait home? Xx
13/12/2017, 6:30 PM – ICE Carol: My kids have just been given a whole lot more presents from Armands school. Thet have too much already. Kale is into lego. They both need winter long sleeved t-shirts.
13/12/2017, 6:33 PM – ICE Carol: Yip we have to be there at eleven. Really feeling worried. X
13/12/2017, 6:33 PM – Mum: Ok then that’s what I”ll look 4 4 them. What sizes shld I get? Xx
13/12/2017, 6:34 PM – ICE Carol: He is about an 8 and she is a ten to eleven top.
13/12/2017, 6:37 PM – Mum: Ok thks. Do u still want me 2 pick Kale up after school or do u thnk u’ll b back by then? Or do u just want 2 let me know 2moro? R they going by the bloods they took on Mon? Xx
13/12/2017, 6:49 PM – ICE Carol: No the nurses took blood today. We should be back but might need saving if we get stuck. Should be fine though cause meeting is at 11.
13/12/2017, 6:52 PM – Mum: Ok. Then I’ll come home after wrk but just let me know if there’s any change & I’ll go & fetch him. Did the nurses come 2 the hse then 2 do that? Xx
13/12/2017, 6:53 PM – ICE Carol: Yes
13/12/2017, 6:54 PM – Mum: Gosh that’s gd service isn’t it? What a blessing. Xx
13/12/2017, 6:56 PM – ICE Carol: Its their jobs. Thats what the community team do. Remember they use to go to Jean to change her dressing.
13/12/2017, 7:00 PM – Mum: That’s true & I have seen them visiting at Mm. Xx
13/12/2017, 8:28 PM – Kim: Please let us know what they say!!
13/12/2017, 8:33 PM – Mum: Know u feel worried but feel sure it will b ok somehow specially as she is so much better now than she was b4 all this treatment etc started. Will certainly b thnkng of u 2 moro. Love u all. Xxx
14/12/2017, 5:06 AM – Lynne Davis: Thinking of you Carol. Of course you worried. Let us know how it goes as soon as you fell able. We love you all. X
14/12/2017, 11:08 AM – Kim: Xxx
14/12/2017, 11:42 AM – ICE Carol: Because counts low not totally accurate sample. But blast down to between 1 and 3%. So that would be considered in remission but because diluted will probably be higher. However she feels that should still be in single figures and down from 60% in beginning. So have to repeat bone marrow on Monday to get more accurate results. But no matter what results chemo starts Monday after bone marrow for five days. Then she can hopefully come home but we will more than lightly end up in hospital at Royal Surrey but at least closer to home etc. Will only stay in at Marsden if her bone marrow shows more than 10% blasts.
14/12/2017, 11:57 AM – ICE Dad: That sounds more positive. Great at least we are going forward . Lol Dad
14/12/2017, 2:15 PM – Kim: Yay!! Good newsðŸ˜ðŸ˜
14/12/2017, 2:40 PM – Mum: That all snds v positive Carol so hope Mon confirms it 4 u. Will this 5 days chemo b in Royal Surrey then or will she have bone marrow check in Marsden & then stay there 4 the 5 days? Xx
14/12/2017, 2:48 PM – ICE Carol: In Marsden mum. All chemo and procedures Marden. But Elsje said that although we can go home after the five days to expect to be in Royal Surrey for some of that. Xx
14/12/2017, 2:51 PM – Mum: Oh I c. At least it is all wonderful news & I’m so v happy 4 u all. Love u all & c u v soon. Xx
14/12/2017, 2:54 PM – ICE Carol: Ja but Elsje said cause diluted expect percentage to increase. She said that should still be less than 10 but no guarentee. So we will really know next Wed. Xx
14/12/2017, 2:56 PM – Mum: Ok. Fingers, toes. & everything else crossed & praying v hard. Xx
14/12/2017, 3:00 PM – ICE Carol: Ja sure it will be fine just not guarenteed so dont want to get hopes up and then be really disappointed. Got bone marrow matches. Elsje said quite a few. So one in uk and two in Germany. So they are requesting samples etc. Earliest for transplant February.
14/12/2017, 3:03 PM – Mum: Oh wow that’s quite a wait but I guess it’s 2 b expected & wonderful 2 know there r some. Xx
14/12/2017, 4:07 PM – Lynne Davis: All going in the right direction like Dad said. So pleased and good to hear match found xxx
16/12/2017, 1:22 PM – ICE Carol: Hi need to know about presents for children please cause only got tomorrow to shop if all goes to plan.
16/12/2017, 1:29 PM – Kim: Hi. My kids not fussy. Maddy still into Elsa and Anna and my little pony. Cammy army and super hero’s. Perhaps onesies or PJs.
16/12/2017, 1:29 PM – Kim: Big kids clothes, shan make up
16/12/2017, 1:41 PM – Kim: If you can’t get anything don’t worry about it. They will understand
16/12/2017, 9:34 PM – Lynne Davis: Hi carol Jordan says key rings or a simple game and Aidan is into creative stuff and making things. Thanks. What about Kale? X
16/12/2017, 9:36 PM – ICE Carol: Lego, audio books, clothes. How was you trip?
16/12/2017, 9:37 PM – Mum: What kind of books does he like Carol?
16/12/2017, 10:14 PM – ICE Carol: Royal Rabbits of London.
16/12/2017, 10:15 PM – Mum: Is that the title of a book or a series of books?
16/12/2017, 10:16 PM – ICE Carol: Title of book but is a series.
16/12/2017, 10:17 PM – Mum: Oh ok thks. Has he already got some of them?
16/12/2017, 10:19 PM – ICE Carol: We have the first one but not as an audio book. We have read that one but he will listen to them at night. X
16/12/2017, 10:21 PM – Mum: I c. Will have a look & c what we can get. Thks. How is Bryony 2day. Did the Wilsons come & visit?
16/12/2017, 10:22 PM – ICE Carol: Ok yes for a little while. Only Annie, Emily and Ruby.
16/12/2017, 10:27 PM – Mum: Oh that’s nice. Sleep tight maybe c u 2moro as thnk we r going 2 bring my car across together with few things so we don’t have 2 bring it all on Mon am. Xx
18/12/2017, 7:53 AM – Armand Faasen: So here we are safe back at the Marsden. Lets take on another round of chemo and bone marrow session.
18/12/2017, 7:59 AM – ICE Dad: Glad your there safe and sound. Poor little mite but it will be worth it in the end, when she is in remission and home 100 percent. Vasbyt we are with you guys all the way.
18/12/2017, 8:05 AM – Lynne Davis: Thinking of you all xxx
18/12/2017, 11:29 AM – Armand Faasen: No op today because results from bone opsy back and blasts 10 to 20 % so not as good as we thought but still better than start. Bad news is wont be home for Christmas probanly three to five weeks in. Xx
18/12/2017, 1:05 PM – ICE Carol: Happy Birthday to Tony!! Hope you havd a great day and year ahead.x
18/12/2017, 2:24 PM – Mum: So v sorry 2 hear about op & Bryonys condition. Poor little soul must b devastated about Christmas – we were all so sure she’d b home. However guess it’s better 2 b safe than sorry. All thoughts & prayers with u all. Love u. Xxx
18/12/2017, 3:38 PM – Kim: Oh no. Still good that it’s down. Pity that’s such a long stint in hospital!!
18/12/2017, 8:05 PM – ICE Carol: First chemo started .
18/12/2017, 8:07 PM – Kim: Aah! Thinking of her!!!
18/12/2017, 8:31 PM – Lynne Davis: Will come see her this week. Xx
18/12/2017, 8:34 PM – ICE Carol: Thanks. X
I think from what the doctor said today because of the toxcidity of the break down of leukaemia cells and not just the toxcidity of the chemo thats why we have to stay. But as long as it works I dont really care. Xx
18/12/2017, 8:36 PM – Lynne Davis: Absolutely. Whatever is needed. Xx
18/12/2017, 8:40 PM – Kim: Absolutely!!!!!
18/12/2017, 8:52 PM – Mum: I guess they know what’s best so it’s gd 2 go along with them no matter how much we may not like it. She certainly sounded chirpy enough on phone earlier which was lovely. Just hope she doesn’t suffer 2 much with this chemo. Love u all
19/12/2017, 8:53 AM – ICE Carol changed this group’s icon
19/12/2017, 9:47 AM – ICE Carol: We had an ok night she was up feeling sick and vomitted. She is really feeling rubbish today. Hasnt moved. Just given her antisickness through her line so hopefully that will help.
19/12/2017, 9:54 AM – Lynne Davis: Oh poor thing just horrid! Have to really remember why the chemo is good for long term as short term itâ€™s just awful. Xx
19/12/2017, 10:26 AM – ICE Carol: I know Ted I have to keep telling myself that because everything in you as a mum wants to stop them hurting your baby. And seeing her like this breaks your heart. But I know she will get better and this is the only way to do it. Xx
19/12/2017, 12:10 PM – ICE Dad: Shame Ted itâ€™s a bastard. You want to tell them to stop hurting her but as itâ€™s the only known way to recover and have a good life, we need to hang in there and help her as much as possible. She is a strong little egg so we must help her all the way. Remember the first
Lot wasnâ€™t great but having an excited little egg in the back going home makes up for it. I find the best when feeling shit is close my eyes and switch off and sleep. Stay strong lots of love thinking of you. Dad
19/12/2017, 12:14 PM – ICE Carol: The doctors have said that this time she is going to be really sick when I just saw them. I know it is worth it. X
19/12/2017, 12:57 PM – Lynne Davis: So shit!! Xxx
19/12/2017, 2:24 PM – Mum: Oh poor little mite. Feeling nauseous is the pits but as u say we have 2 concentrate on big picture & know it’s the means to the end. We r all thnkng of u both & so wish we could suffer in her place. Love u both
19/12/2017, 6:14 PM – Lynne Davis: Bryony up for a face time or is she too sick? X
19/12/2017, 6:15 PM – ICE Carol: She is talking to daddy.
19/12/2017, 6:17 PM – Kim: Love the new pic. Hope the meds have kicked in and she’s feeling a bit better!
19/12/2017, 6:36 PM – ICE Carol: Kim Bryony trying to phone you to say hello.
19/12/2017, 7:40 PM – Kim: Oh dear. Phone didn’t ring
20/12/2017, 4:56 PM – ICE Carol:
20/12/2017, 4:56 PM – Lynne Davis: Brilliant!!! Well done Kale!!!! Xxxx
20/12/2017, 4:59 PM – Mum: Wow saw they were selling a storm but that’s amazing. !!!! Really gd news he will b chuffed. How is Bryony doing 2day? Is she still feeling so sick? Xx
20/12/2017, 5:02 PM – ICE Carol: No they seem to have her sickness under control so much better today. She was a bit down today and feeling a bit otherwise but to be expected. Thanks for helping him mum. Xx
20/12/2017, 5:06 PM – Kim: Wow!!! Great job Kale and Granny
20/12/2017, 5:07 PM – Mum: It was a pleasure Poppet. I actually did v little as school staff had it under control with bit help Kale’s class mates. Glad she feeling bit better physically at least. Thnkng of her constantly. Xx
22/12/2017, 7:26 PM – ICE Carol:
22/12/2017, 7:29 PM – Kim: Whoo, whoo!!
22/12/2017, 8:11 PM – Lynne Davis: Brilliant!! Xx
23/12/2017, 2:07 PM – Lynne Davis: You ok for us to come up Carol? X
24/12/2017, 7:43 PM – Lynne Davis: How B today? We will FaceTime in morning and wish her and will then see what we do. If I still have a sore throat I will send boys up as long as they ok. Xx
24/12/2017, 7:52 PM – ICE Carol: Dont worry Ted sent presents with Mom and dad you guys have enough to organise and worry about. We can face time tomorrow. Xx
24/12/2017, 7:56 PM – Lynne Davis: My boys want to come! Just check they healthy and they will be there. ðŸŽ„ðŸŽ„
24/12/2017, 9:16 PM – Kim: Hi Carol. We may have to only face time as I’ve been sick all week and although I feel better today my nose is runny, Shan and Craig have been ill all week too and Brandon has started feeling fluy today. Don’t want to pass anything on to Bryony. Will see how I feel tomorrow, if better will pop up with Littlies but not going to take any chances. Rather video call and keep Bryony away from germs
24/12/2017, 10:00 PM – ICE Carol: Mom and Lynne said. Have a good Christmas. Would rather not risk her catching anything for the sake of one day. So have a good Christmas.
24/12/2017, 10:07 PM – Kim: For sure. Will video call tomorrow!!
25/12/2017, 7:48 AM – ICE Carol:
25/12/2017, 7:48 AM – ICE Carol:
25/12/2017, 7:48 AM – ICE Carol:
25/12/2017, 7:48 AM – ICE Carol:
25/12/2017, 7:48 AM – ICE Carol:
25/12/2017, 7:48 AM – ICE Carol:
25/12/2017, 7:48 AM – ICE Carol:
25/12/2017, 7:48 AM – ICE Carol:
25/12/2017, 7:48 AM – ICE Carol:
25/12/2017, 8:11 AM – Lynne Davis: Merry Christmas to you all!! No one could have known what a year you would have- not fair but you are all amazing. love to you all!! Xx
25/12/2017, 10:08 AM – Mum: It’s probably just as well actually cos u don’t want 2 b fretting about something u can’t change. Love u all. C u later. Xx
25/12/2017, 11:09 AM – Kim: Merry Christmas. At least the kids look like they are having fun regardless of the setting.
28/12/2017, 4:31 PM – Lynne Davis: So Jordan has a rhythmic sleep disorder. They said itâ€™s a serious sleep disorder which is nice to know we are not crazy. No quick fix however and will either reduce with age or we will need to do an intensive behaviour approach but mixed effect. Going to do a few more investigations that have either a two month waiting list and the best one a year waiting listðŸ˜¬. Suggested at the moment we try a hammock rather than bed and will probably join a study that is taking place out of Zurich. So on we go. How is B today? Xx
28/12/2017, 5:41 PM – ICE Carol: Oh wow. Well like you say at least you arent crazy and people may listen a bit more now. Do they know where it comes from???
28/12/2017, 6:12 PM – Mum: That’s gd Lynne at least u can now feel u r doing something a bit more constructive & not just wallowing in the dark. It’s just a shame u have had 2 wait so long without any help. Xx
28/12/2017, 6:16 PM – Lynne Davis: No donâ€™t know where from can be genetic but neither of us have sleep problems so not sure. Quite common although usually only last for 15mins as opposed to 2 hours for J. They contact school and will go in if needed as can affect his abilities at school. So far not so hopefully will be ok. Our hearts did sink when they said they do an aversion therapy where you get them up every time they rock walk them round the house etc but child has to agree so usually only get success when they about 10 years old- only another 5 years of no sleep! Yes Mum but really their is no fix unless we put him on very heavy medication which is addictive and has a hangover in the morning so they donâ€™t want to do that. Will try hammock and the study is about rocking bedidðŸ˜Xx
28/12/2017, 6:23 PM – Mum: I see. Well fingers crossed that will help. Xx
29/12/2017, 6:14 PM – ICE Carol: Just found out that Bryony has been prescribed an injection to bring up her neutrophils. Shame she is really unhappy and worried about the jab. Xx
29/12/2017, 6:54 PM – ICE Dad: Shame but surely they will numb that area as before so you donâ€™t feel anything. Hopefully it wonâ€™t be as bad as she is expecting. Thinking of her and let us know how it goes. Grandad XX
29/12/2017, 6:59 PM – ICE Carol: Only little spray big injection left big lump on her arm. Brave little lady!! Bless her. Xx
29/12/2017, 8:43 PM – Kim: Can’t they put it through her port?
29/12/2017, 8:44 PM – Kim: Poor little might. She is very brave!!
29/12/2017, 9:37 PM – Lynne Davis: How is she doing? Why the jab? are her neutrophils not coming up as they expected? Xx
01/01/2018, 3:54 PM – Lynne Davis: Howâ€™s B doing today? She looked so sad last night. Xx
01/01/2018, 4:01 PM – Armand Faasen: She is little bit better, thanks Ted. Struggled with tummy aches yestrday. Put a permanent morphine line to help for pain with backup button to give more when needed. She is in control of that. They hope she will not be to long on it. Happy New year and may it a big one.
01/01/2018, 4:02 PM – Armand Faasen: Happy New year Lessers, hope this is a good one.
01/01/2018, 4:03 PM – Lynne Davis: You could see the pain poor little lady. She has been struggling with her tummy for a while. Letâ€™s hope this year is a good one for us all!! Thinking of you all! Xx
01/01/2018, 4:37 PM – Kim: Happy New Year, Manti. Its got to be a good year for all of us!!
03/01/2018, 1:28 PM – ICE Dad: Hi there howâ€™s the princess doing today? Can I pop in for a cup of tea?
03/01/2018, 1:36 PM – Armand Faasen: She is better thanks grandad. Yes you are more than welcome to come and have a cup tea.
04/01/2018, 7:42 PM – ICE Carol:
04/01/2018, 7:42 PM – ICE Carol:
04/01/2018, 7:42 PM – ICE Carol:
04/01/2018, 7:44 PM – ICE Carol:
04/01/2018, 7:45 PM – Lynne Davis: So good to see! Go B GoðŸ’ƒðŸ•ºðŸ¼ðŸ’ƒ
04/01/2018, 8:05 PM – Mum: It’s lovely 2 c her looking so happy & really cute with her new hair style. Xx
04/01/2018, 8:07 PM – Kim: Whoop!! Whoop!! Rock away, Bryony!! Love the hair too!
09/01/2018, 9:11 PM – Lynne Davis: Hey Carol how is Bryony? X
09/01/2018, 9:15 PM – ICE Carol: Hi Bear she is ok. Getting bored of being in here which cant blame her. Hair falling out quite a lot today but seems to be taking it in her stride. How you guys doing?
09/01/2018, 9:18 PM – Lynne Davis: Oh bless her. Absolutely canâ€™t blame her. Is she managing to be up and about? Recovering although slowðŸ˜. Boys back at school tomo and then it all starts again! Just donâ€™t want to get on hamster wheel but hey no choice hey. As soon as we well we will come visit of course! Xx
09/01/2018, 9:22 PM – ICE Carol: Yes thats the problem she is feeling ok so wants to do things but nothing to do!! Good luck hopefully short smooth term. Feb around the corner. Xx
09/01/2018, 10:23 PM – Kim: Maddy tried to phone Bryony earlier. Wanted to chat. Will try again tomorrow 🙂
15/01/2018, 9:59 PM – Lynne Davis: Hiya how are you all. Think we are finally on mend so hopefully can come visit this weekendðŸ¤žðŸ»xx
15/01/2018, 10:15 PM – ICE Carol: Hi Ted we are home. Got home tonight. Got to go back Wed for bone marrow and Then hopefully if B levels up enough next Chemo starts on 22nd.
16/01/2018, 6:56 PM – Lynne Davis: Oh thatâ€™s good news you home for a little while at least. Hopefully you getting some down time before next chemo, is the bone marrow on wed after the 35days or is this the one that is early and so can be inaccurate? Xx
16/01/2018, 7:36 PM – ICE Carol: 28 day one but her levels were up to 5.9 so way over 1 so should drop below. I think last time it stayed at about 0.4. Have to have platelet transfusion when we get there tomorrow before they can do operation. But hopefully will get conclusive results this time. X
16/01/2018, 7:52 PM – Lynne Davis: Ok fingers crossed for tomorrow. Xx
16/01/2018, 11:19 PM – Kim: Hope all goes well tomorrow!
17/01/2018, 9:29 PM – Lynne Davis: How is B? Xx
17/01/2018, 9:32 PM – Armand Faasen: She is ok, thanks Ted. Just complaining about back pain at the moment.
17/01/2018, 9:33 PM – Lynne Davis: Oh bless her. Give her a cuddle from me. Xx
17/01/2018, 9:33 PM – Armand Faasen: Will do.
17/01/2018, 9:49 PM – Kim: Poor little thing. She is a real trooper!!
19/01/2018, 8:08 PM – ICE Carol: Results in we are in remission. X
19/01/2018, 9:38 PM – Mum: That’s fantastic news Carol !!! What happens now? Xx
19/01/2018, 9:46 PM – ICE Carol: Chemo monday for 5 days and then hopefully home for recovery before bone marrow. Counts are up so all good to start Monday. Fingers crossed all stays good till then . X
19/01/2018, 9:49 PM – Mum: That’s gd news, was wondering about her counts. Hope this chemo goes well with not 2 many side effects & then everything would b wonderful. Give her a big hug from us. Xx
19/01/2018, 10:27 PM – Kim: Yay!! That’s fantastic news. So happy!
20/01/2018, 12:50 AM – Lynne Davis: Brilliant!!!! Big hugs to you all xxx
22/01/2018, 6:21 PM – ICE Carol: Bryony and I back at home in bed 5 tiny tiny. But hopefully only a little while this time. Xx
22/01/2018, 6:30 PM – Lynne Davis: Hope the chemo goes well. Keep us updated so we can plan where to visit xx
22/01/2018, 6:37 PM – ICE Dad: Shame but as you say itâ€™s only 5 nights. Donâ€™t worry it will go well and hope you have some decent people in the other three beds, so you get a good nights sleep. Keep smiling and we will be up to see you probably Thursday as I am working Wednesday. Lots of love Dad
22/01/2018, 8:15 PM – Kim: Hang in there!!
23/01/2018, 3:44 PM – ICE Carol: Just seen the transplant nurse, Inny.
Knew we were no where near the end.
Two donors on Male 24 and Female 24. Probably will go with Male. Both from Germany.
Before conditioning Pixie has to have another line put in because she needs three for transplant. A nose tube and kidney and lung test. We potentially start on 4 March?? Wont be at school for at least three or four months after transplant. ðŸ˜”
23/01/2018, 3:53 PM – Mum: Gosh Carol what a business. You don’t realise quite how much is involved do you? When u say donors r on 24 what does that mean? Thought u had sd there was a 12/12 donor? What is the nose tube for especially as she has been eating quite well lately ? Xx
23/01/2018, 3:57 PM – ICE Carol: Age twenty four. I know I said that but she said they tecommend for all transplant patients to help with fluid, food and medicine. She said she had noticed her weight had gone up nut that children recover much better with good nutrition. Guess it is going to be that bad. She is feeling pretty rubbish today and already spiked her first temp 38.9. At about 3 pm.
23/01/2018, 4:30 PM – Mum: Oh shame poor sausage. Thnkng of her so o o much. Love u both.
23/01/2018, 4:45 PM – Kim: Golly. That sure seems so much still!! But at least its positive and steps in the right direction even if they baby ones
23/01/2018, 9:50 PM – Lynne Davis: Oh gosh such a journey for her and all of you! Guessing with the temp spike you will be there longer again as you said so we will come see you at the weekend. Xx
23/01/2018, 10:12 PM – ICE Carol: Potentially but depends cause 48 hour after last spike. So if she doesnt have one on Thursday or Friday she will be ok. Although we are on antibiotics so will see. Xx
23/01/2018, 10:14 PM – Lynne Davis: Ok fingers crossed xx
25/01/2018, 6:30 PM – Kim: How’s everything?
25/01/2018, 6:34 PM – ICE Carol: Ok up and down. When she has a temperature she feels rubbish but once paracetamol kicks in she is better. Xx
25/01/2018, 6:41 PM – Kim: That’s to be expected I guess. Shame man!!!
29/01/2018, 8:48 PM – ICE Carol: We are home hopefully till the 4 March. Fingrs crossed. Back for operation 22nd Feb afternoon for a bonemarrow aspirate, new port put in and nose tube ready for 4th.
29/01/2018, 9:04 PM – Kim: That’s good. Be nice to spend some time at home for a length of time!
29/01/2018, 9:06 PM – ICE Carol: ðŸ‘
29/01/2018, 9:30 PM – Lynne Davis: Oh good a break from hospital for you all. How is she holding up after this last chemo? Xx
30/01/2018, 8:24 PM – ICE Carol: Seems ok Ted so far, so good. But keep thinking something may happen will see. Are you guys going away at half term?
30/01/2018, 8:30 PM – Lynne Davis: Thatâ€™s good but I can appreciate the keep waiting as in the past her temp just spiked. Are they monitoring her neutrophils again? Do you have to go in or does a nurse come to you? Yes going mon to fri as I am shattered and boys need some mummy time. Then will be here over Easter. X
30/01/2018, 8:36 PM – ICE Carol: That sounds good.x Dont know remonitoring no one seems to be coming. Need to do dressing on Friday so may do it at the same time. If not will phone and ask. Got to go in Monday to fetch G-CSF. So will check then if heard nothing. X
30/01/2018, 8:38 PM – Lynne Davis: Gosh sees all to nothing. Bit scary not having any monitoring I guess so no wonder you feeling a bit uneasy. If you have a problem can you go to Royal Surrey or do you have to go all the way to marsden? Xx
30/01/2018, 8:39 PM – ICE Carol: Can go to Royal Surrey.
30/01/2018, 8:47 PM – Lynne Davis: Oh thatâ€™s ok as but easier. Are you still on for op on 22 Feb? Xx
30/01/2018, 8:50 PM – ICE Carol: Yes and need to go to Oxford around then too for op to remove one of her ovaries. X
30/01/2018, 8:55 PM – Lynne Davis: Oh gosh I knew she needed to go to Oxford hadnâ€™t realised they take an overy. Does that mean they try to get it to a place it makes eggs or just for research? Pot noonoo bug itâ€™s so hard and difficult to get your head around as an adult. Lots of love to you all xxx
30/01/2018, 8:58 PM – ICE Carol: Freeze tissue and then re introduce later if needed. I know it is unbelievable but dont want her to say why didnt I do it and at least try to give her the opportunity to be a mum. Xx
30/01/2018, 8:59 PM – Lynne Davis: Absolutely. You have to do it as who knows where science will be in 15years. Xx
30/01/2018, 9:00 PM – ICE Carol: Ja I know but its another operation and another thing to think and worry about. X
30/01/2018, 9:02 PM – Lynne Davis: I know. Itâ€™s so hard and not fair. Just so scary and all you can do is one step at a time. Doesnâ€™t make sense they canâ€™t do it when she is having a planned op. Do you go in for the bone marrow? And is that when no one can visit? X
30/01/2018, 9:06 PM – ICE Carol: 22 February they do Bone marrow aspirate, nose tube (feeding tube) and new port which is same as wigglies really. Then she comes home. Only Oxford do ovaries cause it is still a trial and no guarentee. Sponsored by private sponsor not on NHS yet. We then back on 4th March for conditioning and then 14 March transplant and three weeks or so isolation start then. Conditioning is really strong chemo but not in isolation but own room.
30/01/2018, 9:10 PM – Lynne Davis: Oh gosh. So she comes home with nose tube. Thatâ€™s tough. So by 10 April sheâ€™s gone through worst? What happens after transplant? X
30/01/2018, 9:12 PM – Mum: My goodness didn’t realise she had 2 have more strong chemo but I guess it does make sense. Whole situation is just mind boggling !!!!! Poor little sausage !! But as u say just have 2 take it 1 day & 1 step at a time. There is no other way 2 look at it. Xx
30/01/2018, 9:13 PM – ICE Carol: Check ups twice a week then once then fort nightly etc. They say four to six months before shd will be back at school. So they say probably only September. She still wants to go on her residential in July so will see about that. X
30/01/2018, 9:14 PM – ICE Carol: Jip they say with the conditioning chemo which wipes out everything her haif will go too. ðŸ˜¢
30/01/2018, 9:17 PM – Mum: Then it seems surprising she isn’t in isolation then cos must b at gr8 risk with her own marrow gone. X
30/01/2018, 9:19 PM – Lynne Davis: Oh bless her. Just have to remember itâ€™s curative. Xx
30/01/2018, 9:25 PM – ICE Carol: Ja but remember chemo is a build up so over those ten days they give her two different chemos and immunity suppressants then the new bone marrow on day ten which takes 6 hours to hone in back to bone and start reproducing. This is when she cant get any virus’ or sickness the most cause we need it to graft and grow. She will probably have host v graft disease which is the new bone marrow fighting her own. This is quite good cause it will kill off any blasts lurking to make sure it is gone. But can make her sick. And with the immunity supressants shd is very susceptible to infection but shd needs this to make sure the new bone marrow is accepted. Very complicated.
30/01/2018, 9:26 PM – ICE Carol: Hair not haif will go.
30/01/2018, 9:34 PM – Mum: Oh shame she won’t like that even tho she knew it would happen. The whole thing sounds really scary. I really feel 4 her & so wish she didn’t have 2 face it. Know lots of others have & it’s essential but it is so hard 2 accept. Xx
30/01/2018, 9:39 PM – ICE Carol: I know mom it is very scary and thats why you cant think about it all at once just a bit at a time and hopefully it will soon be over. Check ups and side effects will go on for a long time but at least maybe the worst will be over. X
30/01/2018, 9:51 PM – Mum: That’s true Poppet. Xx
03/02/2018, 11:29 PM – ICE Carol: In Royal surrey !!
03/02/2018, 11:31 PM – Mum: Oh laud Sweetheart. What’s the problem? Xx
03/02/2018, 11:51 PM – Mum: Are u all there? Xx
03/02/2018, 11:56 PM – ICE Carol: Yes Armand and Kale off home now. She has a temperature although here it seems to be ok but she doesnt look well and very pale again. Putting her on antibiotics and culturing blood so hopefully only 48 hours.
03/02/2018, 11:58 PM – Mum: Oh shame. Poor sausage. Had she been in contact with anyone that u know of who has a cold or anything?
04/02/2018, 12:06 AM – ICE Carol: No mum I wouldnt have let anyone come who wasnt well. Only had Issy and Amy.
04/02/2018, 12:09 AM – Mum: Ja I thought so. Trouble is these flipping bugs just float around in the sir sometimes. Is it alright 4 us 2 come visit 2moro or would u rather we didn’t? Xx
04/02/2018, 12:14 AM – ICE Carol: Yes she would love company plus I have loads of cake at home need you guys to take some. X
04/02/2018, 12:15 AM – Mum: Goodness !! Why have u loads of cake?
04/02/2018, 12:17 AM – ICE Carol: Jeanne, Riaan and Amy came for tea so I bought a cake and then she bought two little ones. So now have loads. Xx
04/02/2018, 12:20 AM – Mum: Oh I c. Well maybe we can make a plan when we c u 2moro. Hopefully should c u about 11.30 okay ? Xx
04/02/2018, 12:23 AM – ICE Carol: Yes thats fine. X
04/02/2018, 12:24 AM – Mum: Gr8 c u then. Xx
04/02/2018, 7:26 AM – Lynne Davis: Oh poor B. At least sheâ€™s in good hands. Keep us updated. Xx
04/02/2018, 9:13 AM – Lynne Davis: How is she this morning? Xx
04/02/2018, 11:24 AM – ICE Carol: Had platelets last night cause hers were only 9. And is on antibiotics. Spiked another temp in the night but looks better this morning. X
04/02/2018, 11:30 AM – Kim: Shame man. Glad she looks better today!!
04/02/2018, 11:34 AM – ICE Carol: Ja she was fine. It happens so quick good one minute next not. She is totally neutropenic so no white cells at all. Hopefully a little blip and we will be back home Tuesday. X
04/02/2018, 12:01 PM – Kim: Good to take her in and check though. Will they keep you till Tuesday if she is OK today?
04/02/2018, 12:02 PM – ICE Carol: Yes.
04/02/2018, 5:32 PM – Kim: Oh shame. Guess h
08/02/2018, 6:57 PM – ICE Carol: On way to Royal Surrey spike temp. Will let you know how we go. Xx
08/02/2018, 7:04 PM – ICE Dad: OK hope it goes well, but you will have to stay in. No problem we are free tomorrow so can pick up Kale from school, and move in if you need us. Lol Dad
08/02/2018, 7:48 PM – Kim: Oh no. Hoping all is OK!!
08/02/2018, 7:49 PM – Lynne Davis: Thinking of you. Xx
10/02/2018, 10:23 AM – ICE Carol: Spiked temp. Last night again so wont be home till Monday morning I think. X
10/02/2018, 10:24 AM – Kim: Oh no. Do they know what’s causing it?
10/02/2018, 10:27 AM – ICE Carol: No some kind of infection most of the time they dont know at all. Thats why we stay in cause they send her blood for culture and see if anything grows.
10/02/2018, 11:08 AM – ICE Carol: Found an infection going to be in longer. Apparently a bug that normally lives on your skin but doesnt make you sick. But because of her lines and immunity it does. Only know exactly what it is Monday once cultures are fully grown. X
10/02/2018, 11:08 AM – ICE Carol: Starting antibiotics today to cover that. X
10/02/2018, 11:15 AM – Kim: Shame man!!!
10/02/2018, 11:26 AM – Mum: Oh Carol, am so sorry 2 hear all that. Only gd thing is u were already on the spot so could start treatment strait away. Anyway will come c u later this afternoon. Do u want us 2 bring u anything? Xx
10/02/2018, 11:28 AM – ICE Carol: No thanks mum. Armands going to stay tonight and I am going home. X
10/02/2018, 11:29 AM – Mum: Ok Poppet, c u later. Xx
11/02/2018, 2:43 PM – Lynne Davis: How you doing today? Have antibiotics helped B feel better? X
11/02/2018, 2:46 PM – Armand Faasen: Yes thanks, but on new ones now as they confirmed it was the bug on the skin. Seems to me that we might be here a little longer. Will have to wait and see what doctors say tomorrow.
11/02/2018, 2:49 PM – Lynne Davis: Oh dear you poor things. Thinking of you xxx
11/02/2018, 2:50 PM – Armand Faasen: Thank you.
12/02/2018, 6:16 PM – Mum: Hi Carol. How is Bryony 2day? What news of the infection & treatment? Hope her shoulder is feeling better now. Xx
12/02/2018, 7:15 PM – ICE Carol: Shoulder seems better. Apparently infection in her pipes so if doesnt clear up then will need to replace. So fingers crossed that isnt the case. She seems fine in herself. How you guys?
12/02/2018, 7:18 PM – Mum: Oh gosh, sure hope that isn’t the case. Have fingers, toes & everything else crossed. We r fine thks, just a bit chilly !!! Xx
13/02/2018, 7:48 PM – Lynne Davis: How you doing? You still st RSH? Wondered if they would transfer you. Any news on pipes? X
13/02/2018, 7:53 PM – ICE Carol: Yes still here dont know anything till 48 hours from lunchtime. To see if antibiotics is working. Then we will see from there. X
15/02/2018, 11:05 AM – ICE Carol: Good news is negative cultures so line can stay which is great. But we are here till 22 Feb. We are still going to go up to do all appointments at Marsden and op on 22nd.
15/02/2018, 11:09 AM – Kim: Thats good that it isn’t in the line!! Pity you have to stay but at least they are on hand if temp spikes again.
15/02/2018, 1:40 PM – ICE Dad: Fantastic thatâ€™s good news so the Princess doesnâ€™t have to go through that again. We would pop in later to see you guys but I am sick so donâ€™t want to pass it on to you. The problem is when I visit hospitals I seem to pick up all the bugs from the other wankers. Will talk to you tonight. Lol Dad
15/02/2018, 1:45 PM – Mum: That’s gr8 news Poppet, so plsed 4 her. What is she having done 2moro ? How long shld it take ? We will go 2 yrs 2moro 2 pick up Kale & look after him & will probably move back 2 yr hse Sun so we can look after Kale till u r able 2 come home again. Is that ok with u? Xx
15/02/2018, 2:09 PM – ICE Carol: Hi mom dont worry about tomorrow have had a message from Lucy inviting Kale to Wisley with them tomorrow so you guys can have a day off and relax. If you are sure re Sunday that is lovely but otherwise Armand can just take him to breakfast club and afterschool club and then pick him up. X
15/02/2018, 2:12 PM – Mum: Oh so will Lucy pick him up after his sleep over? If so that’s fine & Sun is no problem at all. C u soon. Love u all. Xx
15/02/2018, 2:14 PM – ICE Carol: Thinking Armand will pick him up in morning and drop him at Lucy. Then come get us cause we only have to be there for 1.
15/02/2018, 2:17 PM – Mum: Oh I c. No prob then. U didn’t say though what is being done ? Xx
15/02/2018, 2:22 PM – ICE Carol: Oh sorry it is just an echo scan of her heart to make sure all good. So this one is quick. Then we have hour and half of antibiotics there and then think we will go home have supper and stuff there then we need to be back at Royal Surrey by ten.
15/02/2018, 2:25 PM – Mum: Oh ok. Knew that had 2 b done but have become bit confused as 2 what is happening when !!!! Xx
15/02/2018, 2:31 PM – ICE Carol: Me too mum all alot to take in. Next week we have kidney test on Tuesday which is all day and then op on Thursday. Then hopefully a few days at home. Xx
15/02/2018, 7:32 PM – Mum: Sorry only just read this as came in just as we got home judging by time & I didn’t hear it. Thks 4 info on nxt wk, maybe it will stay in my head now. Will Bryony still need anti biotics when she comes home nxt wk or do they thnk she shld b fine then ? Xx
15/02/2018, 7:48 PM – ICE Carol: Should be fine after 22nd but do blood test two days after just to check all still on track. X
15/02/2018, 7:50 PM – Mum: Ok . Fingers crossed & wood touched !!!! Xx
16/02/2018, 5:23 AM – ICE Carol: Bad news Nurse flushing Bryonys one wiggly and its burst!! Bloody hell, it doesnt rain it pours.
16/02/2018, 8:39 AM – ICE Dad: Oh God no. So now what ? Back to St. Georgeâ€™s . It seems to me that other Mum was right should have stayed at Marsden and not go looking for shit. Lol Dad
16/02/2018, 8:48 AM – ICE Carol: We didnt look for shit. We didnt have a choice. Will have to have have new wigglies but will find out more later.
16/02/2018, 9:36 AM – Kim: Oh no!! Keep us posted
16/02/2018, 9:37 AM – Mum: I’m so v sorry 2 hear that Carol. It’s really not fair is it? Can’t help but wonder why we all deserve such bad luck. Hope things more positive later, do u still have 2 have echo? Xx
16/02/2018, 10:21 AM – Lynne Davis: Oh no thatâ€™s awful poor B. Guess she canâ€™t wait til other op to have them so only one aesthetic? Love you all x
16/02/2018, 10:02 PM – ICE Carol: Ok they are now going to use one lumin ( pipe) till next Thursday then when she was scheduled her op anyway they are going to take this one out and put one in on the otherside with three lumin. Then she will have what she needs for her transplant. X
16/02/2018, 10:06 PM – Mum: That’s gr8 news Poppet. How did her echo go? Xx
16/02/2018, 10:29 PM – ICE Carol: They said it was fine. So all good. Xx
16/02/2018, 10:31 PM – Mum: Oh gd. Didn’t really doubt it but it’s nice 2 have it confirmed. C u soon. Lots love 2 u both.
22/02/2018, 7:09 AM – Kim: Thinking of you today!!
22/02/2018, 8:26 AM – Lynne Davis: Lots of love xxx
22/02/2018, 3:42 PM – ICE Carol: Went it to theatre just after half past two. Very emotional little girl today. Waiting for her to come out. Cant believe all this everytime seems harder. Hopefully she will be out soon. Xx
22/02/2018, 3:47 PM – ICE Dad: Shame she is such a brave little egg. It does get harder because you know whatâ€™s coming. First time is all new. Weâ€™ve been thinking of you all and she will be fine. Lots of love and see you later. Dad
22/02/2018, 3:47 PM – Mum: Oh shame. I guess it’s understandable she’s more emotional, she is more aware of what’s ahead. Poor little sausage. Have been thnkng of her & u guys all day. Lots love. Xx
22/02/2018, 3:48 PM – ICE Carol: Ja will let you know when she is out and any updates on progress as we know. X
22/02/2018, 3:49 PM – Mum: Many thks. Xxxx
22/02/2018, 4:33 PM – ICE Carol: She is out and ok talking to us but still tired. All went well. She says all is ok except the old exit wound is sore. Armand said to her wow this hospital and she said” Well at least it will help me daddy. ” xx
22/02/2018, 4:34 PM – Kim: Glad all went well!!
22/02/2018, 4:37 PM – Mum: Oh how sweet. She really sounds so grown up sometimes. Glad it all went well & everything seems gd. Don’t rush back if u want 2 allow time 4 her 2 recover, we’ll expect u when we c u.
22/02/2018, 4:39 PM – ICE Carol:
22/02/2018, 4:39 PM – ICE Carol: Mom can you show Kale and talk to him about her nose tube she is worried he wont like it. X
22/02/2018, 4:40 PM – Mum: Ok will do. Xx
22/02/2018, 4:41 PM – Lynne Davis: Tell her we are all proud of her xx
22/02/2018, 4:47 PM – ICE Dad: Shame little princess but as you say itâ€™s all to help you, and carry on being so brave and positive, as 6 weeks time you will be through the worst. Love you Grandad
22/02/2018, 5:26 PM – Kim: So brave!!!
24/02/2018, 10:32 PM – Lynne Davis: Howâ€™s B doing? Keep thinking of you all. Aidan was desperate to visit but both boys have a horrid coughs. Have told him when they well and B can have and wants visitors we will. X
25/02/2018, 9:13 AM – ICE Carol: She is feeling a little tender still but ok. You know your life has been sad when your children are packet and excited to be going to the travel lodge for two nights.ðŸ¤”
How you guys doing?
25/02/2018, 2:38 PM – Kim: Mini vacation!!! Personally I like Travel lodge too
25/02/2018, 5:17 PM – Lynne Davis: Hope it goes as best it can. Big love ðŸ’•
25/02/2018, 5:20 PM – ICE Carol: Thanks Ted, just gone in to get some blood taken from her. What a massive hospital. Looks more like a hotel than a hospital.
25/02/2018, 7:40 PM – ICE Carol: All done at seven at hospital just having supper and I think an early night!! Xx
25/02/2018, 7:45 PM – ICE Dad: Have a leaker supper and a good nights sleep. Sure it will all go well tomorrow. Will be thinking of you. Lol Dad
25/02/2018, 7:48 PM – Lynne Davis: Sleep well xx
26/02/2018, 9:19 AM – ICE Carol: She is in. Xx
26/02/2018, 9:26 AM – ICE Dad: Poor little Princess she is amazing. Thinking of you all. Lol Dad
26/02/2018, 10:57 AM – ICE Carol: You wont believe it dont know what we have done something terrible. Pixie only had one ovary. Consultant says looks like the right one had twisted off and was floating around at the bottom of her pelvis. They were very surprised and havent seen this. So they have taken a biopsy of left ovary so she should still have some tissue preserved. But obviously less hormonal tissue. Just cant believe it!! They say should of caused her a lot of pain when twisted off but she has never ever complained. Poor little thing!! X
26/02/2018, 11:47 AM – ICE Carol: She is back with us still sleepy but ok. Was sore in recovery but they gave her some paracetamol so she feels a bit better. Looks very pale but chatting a little bit.
26/02/2018, 12:06 PM – ICE Dad: Shame little egg. As you say I canâ€™t believe it we just go from bad to worse. Iâ€™m sure she is sore although itâ€™s keyhole surgery itâ€™s still painful. I hope she gets over it quickly and we will see you soon. Dad
26/02/2018, 1:39 PM – Mum: Oh poor Bryony. Can’t believe it. She is having 2 face so much without that sort complication. Hope she is not 2 sore & uncomfortable later but I guess u’ll have 2 keep her dosed with pain killers 4 a while. Thnkng of u all the time. Lots love. Xx
26/02/2018, 9:39 PM – Lynne Davis: Wow thatâ€™s not fair. She is one amazing little girl and to have had so much go on before and not to have known, one very strong lady. I am so sorry though to find out she only had one. At least you tried and who knows where science will be in 15/20 years time. Thinking of you all xxx
26/02/2018, 9:48 PM – ICE Carol: They have still taken a third of the healthy one to freeze just wont be so much tissue. So hopefully the one left will be healthy and she will be able to have a baby one day. Xx
26/02/2018, 10:31 PM – Kim: After all she’s been through that would be the only fair outcome Carol!!!
27/02/2018, 8:56 AM – ICE Carol: Kim nothing is fair we have definitely learnt that through this.
27/02/2018, 4:15 PM – Kim: I know I fully agree. Just feel like its time that it changed and you all had some luck!!!
01/03/2018, 8:37 PM – Lynne Davis: Howâ€™s B doing today? Is Kale off for snow? Xx
01/03/2018, 8:41 PM – ICE Carol: Kale and Armand had school as usual. Snow only got worse after 3 really. Kale off tomorrow but Armand has to go in for year 11 exam. Bryonys ok. Feels like she has a bit of a urine infection phoned the dr. from Oxford to see if normal said not that she knows of first she has heard it happen. Could be irritation from catheter. So as she had no temp have kept her home to see if it feels better tomorrow. Fingers crossed. Dont want to go back to RSCH for two nights. But if not better tomorrow will have to go in. X
01/03/2018, 8:54 PM – Lynne Davis: Oh gosh poor B. Fingers crossed she is feeling ok tomorrow so she can avoid RSCH although if she needs it, best place. Poor Armand surprised students are getting in – suppose at least the boarders are there. Our headmaster decided at 7:30am this morning to close and again about 10 mins ago to call it closed tomorrow. Boys are thrilled. I have to get to London sat so that will be interesting. Xx
01/03/2018, 9:16 PM – Mum: So sorry 2 hear Bryony not so gd. Do hope she feels bit better 2moro. Plse keep us posted. Xx
04/03/2018, 7:28 PM – ICE Carol: Here is our plan..
04/03/2018, 7:28 PM – ICE Carol:
04/03/2018, 7:34 PM – Mum: My goodness Carol. It looks like the poor donor has 2 go thru nearly as much as Bryony. Xx
04/03/2018, 7:35 PM – ICE Carol: No mum that is Bryony just donor details at bottom. Xx
04/03/2018, 7:37 PM – Mum: Oh sorry. Obviously a senior moment. Xxx
04/03/2018, 7:38 PM – ICE Carol: No mum it is confusing. Xx
04/03/2018, 7:38 PM – Mum: Xx
04/03/2018, 8:12 PM – Lynne Davis: Wow but clear and detailed so everyone knows whatâ€™s happening and when for this big step. Go get them B- you are a tough little lady. Last big push xxx
04/03/2018, 9:14 PM – Kim: Very detailed. Its the final count down. Thinking of you all Faasens. Bryony, you rock girl!!!!!
06/03/2018, 1:58 PM – ICE Carol: We have made it into our new room. Room 14. Read with a ” giraffe” picture.
06/03/2018, 2:00 PM – Mum: That’s fantastic Poppet. Bryony must b thrilled. Los love. Xx
07/03/2018, 8:01 PM – Kim: How are things, Carol?
07/03/2018, 8:26 PM – Lynne Davis: Thinking of you xx
07/03/2018, 10:05 PM – ICE Carol: We are ok so far. Bryony is complaining of a sore throat so not sure if this is not the downward spiral??
07/03/2018, 10:08 PM – Mum: Have u asked the nurses if that could b the cause Carol ?
07/03/2018, 10:09 PM – ICE Carol: Havent seen a nurse yet will in a minute.
07/03/2018, 10:12 PM – Mum: Gd. I’m sure they shld know especially as B sd it was after it had been used that it started. Xx
08/03/2018, 5:36 PM – ICE Carol:
08/03/2018, 5:40 PM – Mum: Oh shame. The poor sausage, after she’s been doing so well that really isn’t fair. Was it the chemo that caused the nausea? Has she had it put back or r u still facing that ordeal? Xx
08/03/2018, 5:44 PM – ICE Carol: No still waiting not sure if they will do it today or wait a few days. Not sure she has been feeling really rubbish today. Still sore throat and sore head. Daddy would be happy she has not got up at all today except to go to the toilet. Hasnt really eaten anything and all in all totally opposite to yesterday. Said could be the chemo but could also be a virus that is giving her all symptoms. Dont know?
08/03/2018, 5:50 PM – Mum: Oh dear. Do hope not a virus that would complicate things wouldn’t it? I guess in way better if they wait a while b4 putting it back in case she is sick again. Awful 2 have it hanging over u but u certainly don’t need any repeat performances. So v hard 4 both of u. U’re always in my thoughts & just wish could wave a magic wand & take all the nasty stuff away. Xx
08/03/2018, 5:56 PM – Kim: Oh no!! Shame man!!
08/03/2018, 6:02 PM – ICE Carol: Me too mum. Really hard have one good day like yesterday and then wake up the next day and total opposite. Doesnt really make a difference re virus just put her on antibiotics which is inevitable anyway.
08/03/2018, 6:04 PM – Mum: Oh well I guess at least that’s a blessing if it doesn’t upset time table. Xx
09/03/2018, 11:30 PM – ICE Carol: Not going to replace Bryonys NG tube till end of next week cause they think this next chemo could make her ill and then she would just vomit it out again. So good in one way she has a little break from it as it has rubbed her cheek but not good if she is going to be that sick.
09/03/2018, 11:37 PM – ICE Carol: This message was deleted
10/03/2018, 8:31 AM – ICE Dad: Shame little Princess. But it must be uncomfortable when trying to eat normally. I thought that at the beginning only put it in when you need it and canâ€™t eat. I remember Dad pulled his out he didnâ€™t want it. Guess the experts at Marsden know best. Lol and we will see you over the weekend. Will touch sides with the others so we arenâ€™t all there at the same time. Dad
10/03/2018, 11:10 AM – Mum: Hi Carol. How r u & how is Bryony 2day? Is she feeling bit better & more cheerful than ysterday? Xx
10/03/2018, 11:21 AM – ICE Carol: No says she isnt feeling good today.
10/03/2018, 11:26 AM – Mum: Oh shame. Poor little sausage. Do hope she feels bit better as day goes on. Thnk we’ll come visit 2moro afternoon if she’s up 2 it but will check b4 we leave. Maybe c u 2nite? Xx
10/03/2018, 11:28 AM – ICE Carol: Think she will feel worse before she feels better. One day at a time. Xx
10/03/2018, 11:31 AM – Lynne Davis: Can we visit or would that be too much? Xx
10/03/2018, 11:32 AM – Mum: That’s true I know, I certainly thnk nxt wk will b v difficult .xx
10/03/2018, 11:33 AM – Kim: Shame man. Really hope she starts to feel better soon!!!!
10/03/2018, 11:52 AM – ICE Carol: Think will be too much Ted she is quite down and so sensitive about everything. X
10/03/2018, 11:56 AM – Lynne Davis: Ok will FaceTime briefly perhaps if she fancies xx
10/03/2018, 11:58 AM – ICE Carol: Yip that sounds good. X
12/03/2018, 4:25 PM – ICE Carol: Update: not a great day so far. Feeling nauseous and been sick twice. Just lying in bed not eating or drinking really. Hasnt even picked up phone or ipad.
12/03/2018, 4:50 PM – ICE Dad: Shame the poor little egg. Feel so helpless that we canâ€™t do something to help her. Wishing the next few days could pass as quick as possible so she can start feeling a bit better. Friday is D day and then hopefully her life will become bearable as she will be on the home straight. Keep positive although I know itâ€™s difficult, Iâ€™m going to ring that bell with my little Teddy. Lots of love we are thinking of you all the time. Grandad
12/03/2018, 4:51 PM – Lynne Davis: So horrid to feel so sick. Give her a kiss from us. Xx
12/03/2018, 5:01 PM – Kim: Oh no. Nothing worse than feeling like vomiting. Hope it does pass sooner rather than later!!
12/03/2018, 5:25 PM – Mum: Oh shame, poor little girl. As Dad sd all we can do is remember it is a necessary evil to achieve the end we are all praying for. Love u both, u always in my thoughts. Xx
13/03/2018, 1:23 PM – ICE Carol: A little bit better with sickness today although still feeling nauseous. But seems to be having an allergic reaction they think potentially to the ATG but could be another drug. Her little face and eyes are all swollen and red blotchy rash appearing all over. Giving her piriton and potentially hydrocortisone to get it under control before she has next dose of ATG. X
13/03/2018, 1:48 PM – Lynne Davis: Thatâ€™s so horrible for her. Bit only having to have the shitty stuff but having an allergic reaction too. Big kisses to you all xx
13/03/2018, 1:54 PM – ICE Carol:
13/03/2018, 1:56 PM – Lynne Davis: Thatâ€™s so stressful for you. Poor little thing!! At least her nails look good xxx
13/03/2018, 1:57 PM – ICE Carol:
13/03/2018, 1:57 PM – ICE Carol:
13/03/2018, 1:57 PM – ICE Carol:
13/03/2018, 1:57 PM – ICE Carol:
13/03/2018, 1:57 PM – ICE Carol: Yip, always have good nails and toe nails. X
13/03/2018, 1:58 PM – ICE Carol:
13/03/2018, 1:59 PM – Lynne Davis: Hopefully that smile is not far away!! She will get there again. And have such depth to her spirit. A true little fighter!!! The world wonâ€™t stop her when she is big xx
13/03/2018, 3:34 PM – Mum: Poor little sausage she certainly looks v miserable & I don’t blame her. Things r being v hard 4 her & making her feel so dreadful. I’m sure she must feel its not worth it at times but she has been so incredibly brave & strong. She shows us all up. Lots love 2 u both. Xx
13/03/2018, 3:51 PM – ICE Carol: Swelling is going down so looking a bit better and seems a bit brighter. Xx
13/03/2018, 3:52 PM – Mum: Oh that’s gd. I do hope it stays that way & gets even better. Xxxx
13/03/2018, 3:53 PM – ICE Carol: Me too. How was Kales thing?
13/03/2018, 3:56 PM – Mum: It seemed pretty chaotic & noisy but seemed 2 go ok & everyone seemed 2 have fun. Xx
13/03/2018, 3:56 PM – ICE Carol: Oh ok thanks. What did they do?
13/03/2018, 4:04 PM – Mum: They had made a board game in groups which had 2 include disasters with questions & wild cards. We played 1st game with our child & were then supposed 2 move on to another group but that’s where chaos came in as it wasn’t organised v well. Some people moved, some didn’t & some groups had 4 or 5!kids in whereas Kale was just with Kian( ? Spelling). Anyway Kale seemed happy enough so that’s what counts isn’t it?xx
13/03/2018, 4:04 PM – ICE Carol: Yes thanks for going mum. Xx
13/03/2018, 4:06 PM – Mum: No problem, Carol. Was quite fun & interesting. Xx
13/03/2018, 4:06 PM – ICE Carol: Xx
13/03/2018, 4:47 PM – Kim: Bryony is kicking cancer’s butt!!!!! Most people don’t have 1% if her fighting spirit. Hopefully she has a good night!! (Also noticed the chic nails!)
13/03/2018, 5:15 PM – ICE Carol: ðŸ¤žðŸ»
13/03/2018, 5:52 PM – ICE Dad: Just got in from work, and feel awful seeing my little princess struggling. Hopefully they have got this allergic reaction under control and hope she is feeling a little better. Did she start this ATG yesterday that she reacted to it? Because you say she is going to start now over 10 hrs so you are on duty. I hope it goes better for the little egg tonight as she is amazing. So proud of her. Thinking of you both lots of love Grandad
13/03/2018, 6:19 PM – ICE Carol: Yes the ATG is the rabbit enzyme or something she has today and tomorrow then she is finished. Feeling a bit brighter just had a bath and washed her hair and dhe is sitting up sewing a bat.
13/03/2018, 6:19 PM – ICE Carol:
13/03/2018, 6:20 PM – Lynne Davis: ðŸ˜˜ ðŸ¤— ðŸ˜™
13/03/2018, 6:24 PM – ICE Dad: Little Ted you look better,hope you have a good evening and sleep well. Lol Grandad
13/03/2018, 7:05 PM – Mum: Wow almost looks like a new person. So v glad u feeling more human again Bryony. Xx
14/03/2018, 12:10 PM – ICE Carol: Back to square one. Just given her more piriton and another antihistamine. So hoping will kick in soon. Xx
14/03/2018, 12:10 PM – ICE Carol:
14/03/2018, 12:10 PM – ICE Carol: Hands and feet seollen today too. Poor little lady. X
14/03/2018, 1:32 PM – ICE Dad: Shame little Princess hope the mutie is beginning to help. Just come in from trying to fix Dads Volvo. Have to consult the manual!!!!!! Will talk to you later. Love Grandad
16/03/2018, 3:41 PM – ICE Carol: Pre meds up.
16/03/2018, 3:46 PM – Mum: Have been thnkng of u both all day. Have had gd wishes 4 u from Anne, Heather & Pat Slabbert 2. Hope all goes quickly & smoothly. Love u. Xx
16/03/2018, 3:50 PM – ICE Carol: Thanks mum. Cells only came in this morning so needed to be sorted before transplant. Here now so having hydro cortisol and piriton then will go up.
16/03/2018, 3:53 PM – Mum: I c. Fingers crossed all goes well now. Xx
16/03/2018, 3:59 PM – Lynne Davis: Thinking of you xxx let us know when sheâ€™s out xxx
16/03/2018, 4:05 PM – ICE Carol: Here we go. Doesnt go into theatre just like blood transfusion. X
16/03/2018, 4:22 PM – ICE Dad: Great we are thinking of you. All the best little princess itâ€™s going to do it. Keep smiling. Lol Grandad
16/03/2018, 4:25 PM – ICE Carol:
16/03/2018, 4:26 PM – ICE Carol:
16/03/2018, 4:26 PM – ICE Carol:
16/03/2018, 4:26 PM – ICE Carol:
16/03/2018, 4:26 PM – ICE Carol:
16/03/2018, 4:26 PM – ICE Carol:
16/03/2018, 4:29 PM – ICE Carol:
16/03/2018, 4:29 PM – ICE Carol:
16/03/2018, 4:29 PM – ICE Carol:
16/03/2018, 4:29 PM – ICE Carol:
16/03/2018, 4:29 PM – ICE Carol:
16/03/2018, 4:29 PM – ICE Carol:
16/03/2018, 4:30 PM – Lynne Davis: Oh wow hadnâ€™t realised. Nice to see the smile xxx
16/03/2018, 4:39 PM – Mum: She does looked pleased. I guess she was maybe little apprehensive about a new procedure. Must b gd 2 have it on it’s way. Cx
16/03/2018, 4:41 PM – ICE Carol: All done!
16/03/2018, 4:43 PM – ICE Carol: She said ” Now I have two birthdays”
16/03/2018, 5:21 PM – Lynne Davis: That brought tears. Back to living!! Xx
16/03/2018, 5:33 PM – Mum: Wow that was quick!!!! Didn’t thnk it would take 2 long but didn’t expect it 2 b that fast. That’s brilliant news. Xxx
16/03/2018, 5:37 PM – Kim: Gosh. I that was quick. Glad it went well and that she had a smile!!!
16/03/2018, 5:58 PM – ICE Carol: Being a Faasen is SHIT…. apparently they have just had a call from the German lab to say that they have found a Bug in the cells she was given. So now she has to have antibiotics and be monitored cause infection in her. They say may have been contaminated during harvest process and so not in her donor necessarily. But for Goodness sake 1p steps back. ðŸ˜§
16/03/2018, 5:59 PM – ICE Carol: 10 not 1p.
16/03/2018, 6:00 PM – Lynne Davis: Oh my god Carol thatâ€™s horrid. I am so sorry. Letâ€™s hope and Pray the antibiotics work xxx
16/03/2018, 6:02 PM – ICE Carol: Very apologetic but just our shitty lives.
16/03/2018, 6:06 PM – Mum: Can’t believe it, I would have thought of everyone the Germans would have been the most fastidious & careful. I’m so v sorry. Hope the antibiotics do their trick & she soon back on the strait & narrow but hard enough path. All thoughts & prayers with u all. Xx
16/03/2018, 6:06 PM – ICE Carol: Thanks mum. X
16/03/2018, 6:08 PM – ICE Carol: Waiting for her to get her NG tube then going to come home for night. Think I will come back tomorrow because of potential snow dont want to get stuck. X
16/03/2018, 6:10 PM – Lynne Davis: If the doner is ok can they do it again?
16/03/2018, 6:10 PM – Mum: Ok Sweetheart. That sounds v sensible & at least u’ll have short break. C u later. Xx
16/03/2018, 6:12 PM – ICE Carol: No dont need to cells are good just means they have introduced infection into her body which has absolutely no way of fighting it so potentially she could get very ill. Dont think it will affect the bone marrow. Not sure will ask.
16/03/2018, 6:25 PM – Kim: Bugger!! Hopefully the antibiotics work especially as given so quickly.
16/03/2018, 6:38 PM – Lynne Davis: One thing to be apologetic another to admit they messed up. Surely the nhs is to blame as they obviously didnâ€™t check this end before procedure. I am guessing Germans know what the bug is? Hope the tube goes in ok and not too uncomfortable. Xx
16/03/2018, 6:49 PM – ICE Carol: Tube going in now. Hold thumbs. Xx
16/03/2018, 6:52 PM – Kim: ðŸ‘
16/03/2018, 7:01 PM – Lynne Davis: ðŸ¤žðŸ»ðŸ¤žðŸ»ðŸ¤žðŸ»
16/03/2018, 7:34 PM – ICE Carol: Oh my word that is awful. Its in poor little thing.
16/03/2018, 8:01 PM – Mum: Oh shame. Was it v sire 4 her? How did she cope?
16/03/2018, 8:02 PM – Mum: Sorry that was supposed 2 say sore!!
16/03/2018, 8:04 PM – Armand Faasen: Scared, but was brave once again and took it in her stride.
16/03/2018, 8:04 PM – Kim: Well done, Bryony!
16/03/2018, 8:05 PM – Mum: Oh she is an absolute star & puts us all 2 shame !!
17/03/2018, 8:58 AM – Armand Faasen: Daddy awake, watching his gorgeous little girl sleeping. Still complaing a bit about itchness, but otherwise all under control.
17/03/2018, 9:55 AM – Kim: Glad she’s having a good rest
17/03/2018, 9:58 AM – Mum: It’s gd she is having gd sleep & that they seem 2 b controlling her problems 2 a certain extent. Long may it last. Lots love xx
17/03/2018, 4:00 PM – Lynne Davis: How she doing? Xxx
17/03/2018, 4:02 PM – Armand Faasen: She is ok. Itchiness has gone down. Playing on her ipad.
17/03/2018, 4:07 PM – Mum: That’s gd. Is she not so nauseous 2day? X
17/03/2018, 4:08 PM – Armand Faasen: No none of that today.
17/03/2018, 4:10 PM – Mum: Thk goodness 4 that. Long may it last, poor sausage she does need a break hey? X
17/03/2018, 4:11 PM – Armand Faasen: Ja.
17/03/2018, 4:13 PM – Lynne Davis: Thatâ€™s good to hear xxx
21/03/2018, 3:36 PM – ICE Carol: Did chest x-ray today and nose tube sitting too high in stomach so thats why so difficult to test. Going to move it down today.
21/03/2018, 3:44 PM – Kim: Golly would have thought they’d check it was right. Poor little thing. How’s she feeling apart from that
21/03/2018, 4:06 PM – ICE Carol: She pushed it in herself. She is ok. Bit brighter this afternoon after some paracetamol to get temp down.
21/03/2018, 4:31 PM – Mum: Oh poor little thing. Hope they get it right now so she doesn’t have any more trouble. She really is so v brave. She is amazing. Which is why was so concerned before, so unlike her. Xx
21/03/2018, 5:58 PM – ICE Carol: Jip think we are getting there with feeding. About to have a bath. X
21/03/2018, 6:30 PM – Kim: ðŸ˜ƒðŸ‘
29/03/2018, 6:56 PM – Lynne Davis: RIP to Dizzy. Xx
29/03/2018, 7:03 PM – ICE Carol: Aah soo sad. RIP beautiful girl. You will be missed on our walks.
29/03/2018, 7:33 PM – Mum: So sad Lynne but at least she had a happy, enjoyable life and was v well loved by us all. Will miss her a gr8 deal when we come round. Xx
29/03/2018, 7:34 PM – ICE Dad: Yes Ted itâ€™s very sad. But she had a good innings and today she was suffering and her quality of life was zero. Said goodbye to her today which was upsetting, but you have done the right thing. At least you have nice memories and have Reggie and Ronnie going forward. Dad
29/03/2018, 7:43 PM – Kim: Oh that’s so sad!! She was an amazing dog. Loved it when she stayed here!! RIP Sweet Dizzy
05/04/2018, 5:41 PM – ICE Carol: We have now had 36 hours with no temp. Counts are coming up so neutraphils were 0.4 today. Apparently on day 28 they do a blood test and see percentage donor marrow. We only get results on day 30/31. So thats a week Monday.
05/04/2018, 5:55 PM – Kim: Sounds promising:-)
05/04/2018, 5:58 PM – Mum: That’s gr8 news Carol. So pleased Bryony feeling a bit better. Give her a big hug from me.xx
08/04/2018, 11:31 AM – ICE Carol: I am lying here today waiting for Pixie to wake up. But for the last few days I have been looking at other peoples posts and messages. How their lives are continuing on. People getting to go on holiday, be in the sun. Children achieving things in gymnastics or ballet or other activities. Parents taking children on days out or going to the movies etc. Looked on my school website the other day and my name is not even on it which shouldnt matter in the BIG picture but I am still a staff member. Worrying about applying for phase leader because of restructuring and them moulding three jobs into one. Which was a stuff up anyway cause the girl that went for the job at the same time as me and didnt get the job was then made a role on management scale which no one told me. So instead of two post amalgamating in to one there are three. And although they say they cant discriminate because of me being off I feel so far removed from it. And know out of mind out of sight. Etc. I look at my brave girl and know that all that shouldnt matter and all I should be worrying about is her but at some point life will have to go on. I am soo grateful that she has done so well but scared as to what happens next as we really dont know. I know in my mind she will only be better in five years but even then there is no guarentee. Being here you see the children who have relapse and that scares me soo very much. I was walking back from the washing machine last night and cant even remember life before this. I wish I could wave a magic wand and make it all go away. I look at other people who are sick now and just think man up, my daughter who is ten has been through so much more. So you have a bit of pain or you have to have a little op. Look how many Bryony has been through with a smile on her face. I hear Kale say he is tired of swapping parents as he gets use to one and then we swap and my heart breaks a little. Cause part of me thinks well you are luck you have both of us but then remember he is seven and it is his way of saying things have changed and are hard. I keep questioning why I became a teacher why didnt I do something else that I could diversify or work from home or something. Then I think to myself oh for goodness sake Carol this is not about you. You would do all this ten times over to have a healthy little girl home. And I would but I still feel the way I do. In two weeks my little girl will be eleven and half of her year as a ten year old has been in this hospital. It so is not fair. But then when was life fair. Mom always said things happen for a reason and God only gives you what you can manage which we have always lived our lives by but why do some people seem to have it soo easy. Maybe they dont but they are not here sitting next to their child hoping like made this transplant has worked because all the symptoms they said would happen to some extend havent really. Does that mean it hasnt grafted?? X
08/04/2018, 12:06 PM – Mum: Oh Carol, I do soooo understand all yr thoughts & feelings & wish I had some words of gr8 wisdom & comfort 2 give u but unfortunately haven’t. All I can say is that u have all been incredibly brave & coped with the situation so v well. Also thnk u can draw comfort from the fact she is much brighter & chirpier again plus her neutraphils r up slightly so it does look positive even if not everything has happened that they sd. After all everyone is different & will react differently. Plus the fact they talking of her coming home 4 her birthday, even if it’s only 4 the day must b a gd sign. All thoughts & prayers with u. Love u. Xx
08/04/2018, 12:46 PM – ICE Dad: Hi there Ted. Can understand how you are feeling as you have been through a lot in the last five months. Also you have been right in front and all we can do is try and support you from a distance. But being realistic 6 months out of a life time is a small percentage, so just stay positive. Iâ€™m sure we are on the back straight and when I talked to her the other night she was looking good and full of fun. Remember everyone is different so the fact that certain things didnâ€™t happen doesnâ€™t mean a problem. I think when you are positive in life you can move the earth. Bryony is a little fighter and I am sure the bone marrow has grafted. Ted keep strong as your on the back straight and you will get the good news in the next couple of weeks. Lots of love Dad.
08/04/2018, 1:38 PM – Lynne Davis: Canâ€™t even imagine how it feels Carol and you have all been through so much. More than anyone will know. It must be very scary seeing the children come back in with relapse but there are many more you never see as they stay well so try to remember that too. Bryony hasnâ€™t done what they expect always and so her path looks different! Like she said- she has her hair and they never see that! Not long now until you get the test and results so hopefully that will be a huge relief and the start of building your lives back at home. I can imagine itâ€™s so hard to not be part of school life etc as that has been your identity as an adult- who knows where you will go with it all but hopefully when B is back home and at school, you can find that part of you again too. Itâ€™s been a long hard five months and although she will be monitored for five years she and you all can live again. I do have some idea of when you see others complain about illness etc as I get some of that with my clients but you learn to let it go too as it makes life more normal again. Lots of love xx
08/04/2018, 3:05 PM – Kim: I’m positive its taken!!! Don’t worry about school I know Anne thinks highly of you and your teaching. You can always tutor or something instead if you decide to. When its time you can consider all your options. It has been a long hard road for you all but the end is in sight!!
13/04/2018, 10:44 PM – ICE Carol:
13/04/2018, 10:49 PM – Mum: Don’t know if u lucky or not Carol. He always tells me mine is Cocksedge even after 47 yrs. !!! Xx
13/04/2018, 10:51 PM – Kim: ðŸ˜‚
13/04/2018, 11:26 PM – ICE Carol: Well to be honest dont think it is lucky and actually he is only half Bailey too. ðŸ˜‚ðŸ˜‚ðŸ˜‚
13/04/2018, 11:32 PM – Mum: That’s true 2. Sleep tight. Lots love. Xx
13/04/2018, 11:35 PM – ICE Carol: Trying to sort Bryonys reaction Dr on duty phoned Consultant all scratching their heads. Have told them that it is the drugs need to know which one. Giving her extra antihistamine drugs and we will see in morning. Also told them that foscarnet infusion needs to be over 3hrs so goinv to try that too. We will see. X
13/04/2018, 11:37 PM – ICE Carol:
13/04/2018, 11:37 PM – ICE Carol: Face even more swollen tonight and more rash in mouth.
13/04/2018, 11:38 PM – Kim: Oh shame. Poor little might!!!
13/04/2018, 11:41 PM – Mum: Oh the poor sausage. It must make her feel rather grotty now. Do hope they find cause v soon so she can start feeling more normal again. It really is awful. As fast as she shows bit improvement she gets hit with something else . Sooooo v unfair. Xx
14/04/2018, 12:48 PM – ICE Carol:
14/04/2018, 12:48 PM – ICE Carol: Ward not watd.
14/04/2018, 1:05 PM – Kim: Hopefully consultant will know or be able to figure it out.
14/04/2018, 2:14 PM – ICE Dad: Hi there Ted. Tried to ring but you must have been out running. We are on our way up to see you guys. If you need anything give us a shout and can stop off at co-op to get for you. Cu about 3.15. Dad
14/04/2018, 2:33 PM – ICE Carol: Not holding my breath
14/04/2018, 2:39 PM – ICE Carol: Hi yes was out got somethings at Sainsburys so all good thanks. See you later.
14/04/2018, 2:41 PM – ICE Dad: Ok gr8. Cu just now. Xx
14/04/2018, 5:53 PM – ICE Carol: Let me know when you here and I can open the door. X
15/04/2018, 12:41 PM – Mum: Hi Carol. How r u guys 2day? How is Bryony? Are her eyes & her little face any better 2day ? Xx
15/04/2018, 1:03 PM – ICE Carol: No not really maybe a little bit less swollen but more rash anc blisters in her mouth. Dr in but I think we need to give change a day or two before we make anymore. So lets see what today brings. How you guys? Armand daid you are in Camberley?
15/04/2018, 2:06 PM – Mum: Oh shame poor little girl, it’s all so ghastly 4 her but I thnk u right better 2 wait a day b4 making any more changes. We in Camberley cos Dad has 2 get the lights we going 2 deliver on Thursday all ready & I brought my winter trousers & skirt back & am changing them 4 some lighter ones. Xx
15/04/2018, 6:39 PM – ICE Carol:
15/04/2018, 6:58 PM – ICE Carol:
15/04/2018, 7:17 PM – ICE Carol:
15/04/2018, 7:41 PM – ICE Carol: Pentamidine given by inhalation is used to prevent a serious lung infection (Pneumocystis pneumonia-PCP) in people with acquired immunodeficiency syndrome (AIDS). Pentamidine belongs to a class of drugs known as antiprotozoals. It works by killing the organism that causes the infection.
15/04/2018, 7:56 PM – Mum: Gosh that snds v complicated. Did u know she would have 2 have it b4? What happens when she comes home? Do u have 2 keep gas & mask etc at home & administer it yrself ? Xx
15/04/2018, 8:00 PM – Kim: Golly hopefully it doesn’t smell bad!
15/04/2018, 8:10 PM – ICE Carol: Dont think so mum will come in for it in daycare I am sure. Said it wasnt great but ok. Because her nose is swollen she cant breath through it so only through mouth.
15/04/2018, 8:13 PM – Mum: Oh shame. It really is one thing on top of another. Xx
15/04/2018, 9:09 PM – Lynne Davis: Poor noonoo so brave and so much she has to still manage! Xx
20/04/2018, 10:47 AM – ICE Carol: Home today for Bryony birthday hooray ðŸŽˆðŸŽˆðŸŽˆðŸŽˆðŸŽˆ
20/04/2018, 2:33 PM – Lynne Davis: Fantastic news!!!!
20/04/2018, 4:35 PM – Kim: Whoop whoop!!! Awesome!
20/04/2018, 8:09 PM – ICE Carol: Bryony’s results are back and soo far 100% host cells they redo these I think she said after 3months etc. Once we get to two years chance of relapse very slim. So v. long way to go but wanted to let you know we are on the right track. X
20/04/2018, 8:27 PM – Kim: Fantastic news on her birthday!!
20/04/2018, 8:28 PM – Kim: Are you home for the weekend now or for good
20/04/2018, 8:55 PM – Lynne Davis: Great birthday present. Hopefully in two years we will have a super big party!! Lots of love to you all!!!!! Xxx
20/04/2018, 9:50 PM – ICE Carol: Weekend then if all good discharged Monday night. But have to go up for clinic twice a week to begin with. X
20/04/2018, 10:05 PM – Kim: Oh how super!!!
Can we pop round with a pressure tomorrow – if Bryonyd up to it or will send with mom and dad next week.
20/04/2018, 10:08 PM – ICE Carol: You can if you want to with no bugs please.
23/04/2018, 7:33 PM – ICE Carol: We are home. Fingers crossed all continues this way. Immunity low need to be careful. Up to Marsden twice a week. Two years till we can relax a little. X
23/04/2018, 7:34 PM – Kim: Glad all went well today!!
24/04/2018, 6:37 PM – Lynne Davis: Thinking of you all Settling back at home hopefully for good but also with anxiety for next two years. Enjoy your moments. Love you
24/04/2018, 7:01 PM – ICE Carol: Thanks Ted, very scary but glad I have every moment. Xx
24/04/2018, 7:01 PM – ICE Carol: Love you too.
24/04/2018, 7:03 PM – Lynne Davis: Absolutely I think we are all more aware of the moments we get blessed with now. Trying not to wish away any with the boys even though itâ€™s hard sometimes when they are being pickles. X
24/04/2018, 7:05 PM – ICE Carol: You right it is hard. See you soon. X
05/07/2018, 5:32 PM – ICE Carol: Just to update everyone. We went to clinic today and Bryony is doing really well. She still has 100% donor cells. Count are all really good. Organising her line removal so should get a date soon for that. Otherwise only back to clinic in a month. Xx
05/07/2018, 5:35 PM – Mum: That’s brilliant news Carol, so v pleased 4 u all. Long may it last. Lots love 2 u all. Xx
05/07/2018, 5:36 PM – Kim: Wow!!! Thatâ€™s great! ðŸ˜€ðŸ˜ðŸ˜†
05/07/2018, 6:27 PM – Lynne Davis: Great news!! So pleased and finically getting her line out too. Like Mum says long may not last!! Xxx
05/07/2018, 8:46 PM – ICE Carol: Never be happy!!Off to hospital Bryony spiked sorry won’t be doing morning now.
05/07/2018, 8:47 PM – Kim: Oh no!! Thatâ€™s terrible. Hopefully nothing serious!!
05/07/2018, 8:49 PM – Mum: Oh shame Poppet, do hope it’s nothing much & u’ll soon b home again. Will b thnkng of u & plse let us no what happens. Xx
05/07/2018, 11:01 PM – ICE Carol: Going home. X
05/07/2018, 11:07 PM – Mum: That’s gr8 news, Sweetheart. So pleased all well after all. Must be such a relief 4 u. !!! Xxx
05/07/2018, 11:09 PM – ICE Carol: Think it is virus. So she is going to have tablets. But at least she can go to Bohunt tomorrow. X
05/07/2018, 11:28 PM – Lynne Davis: Oh thatâ€™s good news. Hopefully tabs work and she feels better soon. Big love to you all xx
06/07/2018, 8:54 AM – Mum: Hope she enjoys her visit 2 Bohunt & that she feels full of beans again in no time. Lots of love, thnkng of u both.
06/07/2018, 9:00 AM – ICE Carol: Hi Mom thanks she went off happy. Think she is so glad to be going and not missing it. Hope you ate ok. Xx
06/07/2018, 9:06 AM – Mum: Ja I’m fine just a bit tired if being so hot!!! Shouldn’t moan I guess but can’t take it 2 well & really really wish it would rain the poor grass looking so sick. What about u after stressful evening.xx
06/07/2018, 9:11 AM – ICE Carol: I am ok thanks we are all just a bit pooped this morning. X
06/07/2018, 9:18 AM – Mum: Am sure u r. Have a quiet day & take if yrself. Xxx
06/07/2018, 9:19 AM – ICE Carol: Thanks mum. Xx
06/07/2018, 3:49 PM – Lynne Davis: How was Bs day? Xx
06/07/2018, 4:06 PM – ICE Carol: Good she loved it. X
06/07/2018, 4:55 PM – Kim: Glad she enjoyed it!
06/07/2018, 5:05 PM – Lynne Davis: Thatâ€™s good xx
06/07/2018, 5:05 PM – Lynne Davis: Just off to Southampton for a night in their sleep clinic. Yay!ðŸ™„
06/07/2018, 5:15 PM – Mum: That’s lovely so pleased she enjoyed it. Hope it goes well Lynne & has another gd result like the last one. Will thnk of u. Xx
06/07/2018, 5:16 PM – ICE Carol: Oh you sure know how to live it up Ted. Xx
06/07/2018, 5:49 PM – Lynne Davis: I know Carol! As you know all too well sleeping in hospital is just so rocking it! Xx
06/07/2018, 8:04 PM – Kim: ðŸ˜‚
06/07/2018, 8:39 PM – ICE Carol: Hey how come you have a proper bed and not a pull down. ??? ðŸ˜‰ðŸ˜‰
06/07/2018, 8:47 PM – Lynne Davis:
06/07/2018, 9:46 PM – ICE Carol: Bless the little dude. All those wires. Xx
06/07/2018, 9:49 PM – Mum: Shame looks like he can’t move !! Hope u both have a gd nite. Sleep tite Ted. Xxx
07/07/2018, 2:04 PM – ICE Carol: Line infection in line have to go t hospital
07/07/2018, 2:10 PM – Lynne Davis: Oh no Poor B after almost getting that out. Thinking of you and sending love xx
07/07/2018, 2:11 PM – Kim: Oh bugger. Thatâ€™s exactly what I thought Lynne!!
07/07/2018, 3:43 PM – Mum: Oh no. How did u find it? But thk gdness u did. Plse let us no how u get onHi Heather. Am so v sorry not 2 have responded 2 yr email b4 this & we were also v sorry 2 read John’s cancer was more severe than originally thought. We hope & pray that the Docs removed it all as they sd & that it isn’t anywhere else. At least now they know they’ll keep monitoring him & if it does appear elsewhere will b able 2 deal with it quickly. It was lovely 2 hear he was getting back 2 his old habits & doing the shopping. Showed he is obviously feeling a lot better which was gr8 news. Plse keep us posted with any further developments. Lots love Trisha.what’s nxt move. Will b thnkng of u, so much. Lots love 2 u all. Xx
07/07/2018, 3:47 PM – Mum: Plse ignore that gobble gook. A SMS 2 Heather somehow got pasted in really don’t know why hadn’t done anything except try 2 corrects spelling!! Hope u can c what I was trying 2 say. All thoughts & prayers with u & hope it can get sorted as quickly as possible. Keep us posted. Lots love 2 all. Xxx
07/07/2018, 9:26 PM – Lynne Davis: Are you staying in Carol or are you home? Xx
07/07/2018, 9:41 PM – ICE Carol: Staying in
07/07/2018, 9:43 PM – Lynne Davis: How is B? Are you at RSH? Just couldnâ€™t let me have the glory with my fancy bed last nightðŸ˜œ. Let us know how you go. Xx
07/07/2018, 9:47 PM – ICE Carol: She is absolutely fine. Wish they had just taken lines out. Anyway what can we do. Yes have to say saw the luxury you were staying in a really missed the last six months of my life so rushed back.
07/07/2018, 9:48 PM – Lynne Davis: Are they taking them out now? Or do you need to wait until infection clear? The joys of hospitals- no shower for me though so good bed but that was it. Hopefully you out ASAP Xx
07/07/2018, 9:55 PM – Mum: Poor sausage. How long will u have 2 stay Carol.? It must almost feel like home from home. Hope u have a decent nite & will b in touch in the a.m. Lots & lots love. Xx
07/07/2018, 10:32 PM – ICE Carol: Don’t know have to wait and see tomorrow. On antibiotics but normally line infections resistant to drug so will change it to the one she had last time that she has the Red man syndrome from. Can’t believe 8 years ago I was in here too. Just one floor up with my own infection. X
07/07/2018, 10:38 PM – Mum: Oh dear, do hope it doesn’t come 2 that. Will b thnkng of u both & will spk in the morning. Lots love xxMum
08/07/2018, 9:07 AM – Mum: Hi Carol. How r u 2 today? Did u sleep ok? Xx
08/07/2018, 9:18 AM – ICE Carol: Very hot no aircon in the room we are in and no windows. But slept on and off thanks. Waiting for dr. rounds and will then fill you in. How are you? How was the fair? How was Camerons party?
08/07/2018, 9:49 AM – Mum: We r fine thks, just tired of being so hot!!!! Fete pretty dire as most of them r & Cameron just had cake & presents as he had been 2 a friends party earlier in the day. Look 4ward 2 hearing news on B. Xx
08/07/2018, 9:51 AM – ICE Carol: Going home.
08/07/2018, 9:52 AM – ICE Carol: Back in and out for antibiotics
08/07/2018, 9:53 AM – Mum: Oh wow brilliant!!!! Maybe we can pop in & c u all later , if that ok with u. Xx
08/07/2018, 9:56 AM – ICE Carol: Yes sounds good mom. Xx
08/07/2018, 9:56 AM – Kim: Thatâ€™s good news, Carol!!
08/07/2018, 10:07 AM – ICE Carol: Lines coming out on emergency list.
08/07/2018, 10:09 AM – Mum: That’s gr8 news bet she’ll b thrilled 2 get rid if them at last. Xxx
08/07/2018, 10:10 AM – Lynne Davis: Where will that be Carol – St Georgeâ€™s? Xx
08/07/2018, 10:11 AM – Kim: Awesome!!
08/07/2018, 10:12 AM – ICE Carol: Don’t know Ted might be here or St Georges.
08/07/2018, 7:42 PM – ICE Carol: Moved rooms. No air conditioning,no fan, no windows that open. Tooo HOT!!!
08/07/2018, 7:47 PM – ICE Dad: Hey Ted thatâ€™s crazy. Ask them to get the air conditioner working or get you a fan. Crazy you canâ€™t sleep in those conditions. If not go home and then back on the morning. Dad
08/07/2018, 8:03 PM – ICE Carol: Going home. Back at 8pm for more antibiotics.
08/07/2018, 8:04 PM – ICE Dad: Thatâ€™s great and then you can get a decent nights sleep.
08/07/2018, 8:05 PM – ICE Carol: Yip. X
10/07/2018, 12:25 PM – ICE Carol: Picking kids up and on our way to St Georges Line out tomorrow.
10/07/2018, 12:29 PM – Lynne Davis: Thatâ€™s good at least quick. ðŸ˜˜ðŸ˜˜ðŸ˜˜
10/07/2018, 12:33 PM – ICE Carol: Ja but it is her play on Thursday and she will be so disappointed if she misses it. So fingers crossed it all goes smoothly. X
10/07/2018, 12:36 PM – Lynne Davis: Oh no that is bad timing. Fingers crossed, although she will be tired so may not be able to manage anyway. But of course her health has to come first and no line will mean a happier summer hopefully with swimming etc and no infections. So if she focuses on that it may help with the disappointment. Just not fair!! Big hugs Xx
10/07/2018, 12:58 PM – Kim: Good luck Faasens.
10/07/2018, 1:32 PM – ICE Carol: Thanks how is OFSTED going??
10/07/2018, 1:56 PM – Mum: That’s gr8 news Carol. Hope it all goes quickly & well so she can b home 4 her play if she’s up to it. So lovely she hasn’t had long wait. U’ll all b in our thoughts & prayers. Xx
10/07/2018, 5:00 PM – Kim: Lots of hype and not much else!!!Class visit was super short too!
10/07/2018, 5:06 PM – ICE Carol: Was it just a one day one??
10/07/2018, 5:07 PM – Kim: Yup. Thatâ€™s what she said this morning!
10/07/2018, 5:07 PM – ICE Carol: Mum any chance you can hang around ours after work and pick up Kale?
10/07/2018, 6:32 PM – Mum: Ja Carol, that’s fine. Will it b at 3.15 as usual? How r u guys? How is Bryony feeling? Xx
10/07/2018, 6:36 PM – ICE Carol: Full of beans!!
11/07/2018, 9:40 AM – ICE Carol:
11/07/2018, 9:53 AM – Lynne Davis: So grown up!! Love you all. Let us know when sheâ€™s out xx
11/07/2018, 9:58 AM – ICE Carol: Will do. Hate the waiting. Said coming now and now we wait. X
11/07/2018, 10:40 AM – ICE Dad: Good luck little Princess. Hope it all goes well and will see you later . Love Grandad
11/07/2018, 10:41 AM – ICE Carol: Thank you Grandad. See you later. X
11/07/2018, 11:45 AM – ICE Carol: She is in.
11/07/2018, 12:13 PM – ICE Carol: She is back.
11/07/2018, 12:14 PM – Lynne Davis: Ok good. Hope she doesnâ€™t feel to rotten with anaesthetic. Xx
11/07/2018, 12:17 PM – ICE Carol: Seems ok. Going back to Royal Surrey later and hopefully on home leave.
11/07/2018, 6:38 PM – ICE Dad: Hi there Ted. Where are you and the princess?
11/07/2018, 6:42 PM – ICE Carol: Hi we are at the Royal Surrey waiting for her antibiotics that can only be given at 9:30 because St Georges only did it at 11:30 last night and they can only bring it forward two hours. But then going home. Only have to be back tomorrow night for last dose antibiotics then we are done.
11/07/2018, 6:45 PM – Mum: That’s gd news Carol cos then she can b in her play can’t she? Glad it all went well 2day & that she’s feeling ok. Xx
11/07/2018, 6:46 PM – ICE Carol: Yip thats the plan mum. And hopefully it will all go to plan. X
11/07/2018, 6:48 PM – ICE Dad: Thatâ€™s great and now you can relax a bit. Iâ€™m pleased for both of you and proud of the brave little egg.
11/07/2018, 6:50 PM – ICE Carol: Thank you
11/07/2018, 7:23 PM – Kim: Awesome news all round!!
12/07/2018, 9:51 PM – Lynne Davis: How was Bs show? Did she manage it? Xx
12/07/2018, 9:52 PM – ICE Carol: Yes she did really well. Proud mummy and daddy. X
12/07/2018, 9:55 PM – Lynne Davis: Oh well done B!! Super star xxxx
13/07/2018, 6:22 AM – Kim: Well done, Bryony!!
*video Bryony Ursula*
13/07/2018, 8:51 PM – Kim: Bravo!!!
13/07/2018, 8:52 PM – Mum: That looks really gd. Bryonys quite the Star !!! Xxx
7 July 2018
We are again tonight in hospital after almost 2 months and a half months at home in our own beds. We came in on Thursday Night as Bryony had spiked a temperature. Her temperature returned to normal by the time they admitted her on to the ward. Friday was a very special day as it was her induction day to secondary school. She was so desperate not to miss this I asked the doctors if we could go home that night as she had good blood levels and on the account of the fact that she is not neutropenic. The doctors agreed and sent us home with oral antibiotics. A very happy little lady although very tired went of off to her induction day. Saturday at 1:30pm I got a call from the hospital to tell us we needed to come back in as Bryony has a line infection. So here we are the two of us back in a hospital room.