Sarah's Home!

For those of you that are unaware, Sarah came home (for good) from Barts on Friday. Her blood levels are up, she is free of infection and faces no more Chemotherapy - as long as you dont count her last shot of intrathecal chemo she is due on her next clinic appointment.
After what has been a turbulent last 4 months, Sarah has got through 4 cycles of Chemotherapy, in what must be a record time and all the doctors and nursing staff are amazed at how well Sarah has done and come through a life changing experience.
Now, it seems that the hardest part of this story is about to begin as we readjust to a family life, as so much of recent times has been disjointed. The last few days have certainly hit home how much we have missed, and come out of the routine of normal, family life (not missing Natasha's 5.30am morning stars!)
It is my intention to keep this site updated throughout the next few months as we report on Sarah's progress post Barts......and a big thnak-you to all those who have taken the time and effort to keep in contact & raise our spirits over this period.

Streptococcus

Sarah was moved back up to the specialist Haemotology ward, Frederick Andrewes, on Friday as her infection progressively got worse and the doctors couldnt diagnose the exact strain of infection; despite taking (painful) blood samples from the main artery in the arm they couldnt determine what was wrong as Sarah continually went from cold to fever and her temperature regularly sored above 40c.

Thankfully, after what seemed like an enternity they diagnosed that Sarah contracted (http://www.dhpe.org/infect/strepa.html) and was given a course of antibiotics to combat this. However, all through Saturday Sarah was again suffering from hot & cold spells (a bit like the climate outside) and she was on oxygen all through the day and night. In fact at one stage she really had thought that right at the end something terrible was going to happen, she was in incredible pain and nothing she had ever experienced before in her life could compare with this pain and hurt.

The children came up to visit Sarah on Sunday and their visit perked her up and she was feeling slightly better than the previous two days; although their visit had left her extremely tired and that evening she was again on oxygen and suffering from cold shivers.

Monday and Sarah was sat up in a chair and was dressed, when you consider that the previous 4 days Sarah was bed-ridden and hadnt been capable of dressing herself, I knew that she was hopefully through the worst of it. As during Sarah's hospitalisation she has always made a point of getting dressed and getting ready for the day ahead.

Now Tuesday and Sarah is no longer spiking any temperature or suffering from any hot/cold sensations, although she is still on oxygen to help calm her breathing. As I have said before we never know what each new day will bring but thankfully Sarah believes that she has turned the corner, in what has been quite a worrying week, and definitely one of the worst weeks in recent times. The consultants saw Sarah today and were pleased with her progress through this latest infection and lets hope it wont be too long until we can try and get on with our lives; in fact Sarah has been watching alot of programmes about India (albeit on her dodgy TV reception in her room) and I know that one day I'm going to take her and the girls there - just like the colonel in Fawlty Towers:

I must have been keen on her because, ah, because I took her to see, ah, India! ... At the Oval! A fine match, a marvelous finish! Now, Surrey had to get 33 in about a half an hour, and she went off to, ah, powder, ah... powder her hands or something.

Just a little Patience...

Not a good day today, Sarah spent most of the day wiped out due to a disturbed nights sleep. One minute she was feeling extremely cold, the next she was burning up and her temperature was soaring past 40c coupled with a very low blood pressure reading requiring a special boost of fluids to bring this up. Sarah is on a regime of strong antibiotics and she also had blood taken from a main artery in her arm (a very painful procedure) which was sent off to Intensive Care for extra analysis for infections. Thankfully, that came back with nothing sinister and she was ordered extra units of blood and platelets to help boost her.

Just when you think of the rollercoaster of events from the last 4 months can not deal up any more surprises there are still yet further barriers and demands both mentally and physically to face. The realisation of the difficult journey ahead for us all is not far from our minds but it is now that we must focus on and getting Sarah better from what is her worst infection to date.

How things can change, so quickly!

I popped in at lunchtime to see Sarah, who had recieved her blood and platelet transfusions over the past 18 hours and she was sat up in bed feeling quite well.On my return to the ward after work tonight I found Sarah huddled up in bed with the shivers and a temperature of 38.5c. Apparently, an hour after I had left her at lunchtime Sarah came over with the shivers and was going from hot to cold to hot.Sarah's shivers become predominantly worse and I have never seen her look or react so ill - the doctors were paged and a shot of pethidine. This would help stop the shivers, but ultimately less than a minute after it was given Sarah was uncontrollably sick but thankfully the shivering had ceased and now Sarah was burning up.Sarah has an infection, we are waiting for the blood cultures to grow some bacteria for analysis and is still running a high temperature. So yet again upon her return to Barts within a few days she is sick again - and I thought that hospitals were supposed to make you feel better.......

Sarah's Back

Sarah's return home was greeted with the hottest few days of the year, as summer finally seemed to emerge from the clouds. Obviously, fortune was starting to shine again and Sarah spent some time with her family and we even enjoyed our first bar-b-q of the year on Friday night.
Saturday we ventured into Southend High Street, a past time that we havent exactly missed. From the afternoon we celebrated my mum's birthday with all her family; Abigail & Natasha certainly enjoyed spending time playing with their cousins and it will be so nice once they have moved back to the Southend area.
Sunday we spent relaxing, knowing that Barts was awaiting for the last and final hospital stay in Sarah's fight with AML. We arrived on the GHF ward aat about 6.30pm, to be told that the doctors were expecting us at around lunchtime. Our past experience had taught us that the Barts timekeeping was something that was left to be desired so it made a welcome change to think that we had kept them waiting.
After an initial consultation with a new doctor, Tony, he queried why we had returned as Sarah's counts on Thursday were very good (neutrophils 6.7); so he took some more blood samples and granted us leave to head for the Pizza Express at Farringdon. Upon Sarah's return her blood test results were waiting and Sarah was neutrophenic (neutrophils 0.0) and her platelets were down to 12. So she would need the regular post-Chemo transfusions on Monday - oh what joy back to the familiar routine. It is rather ironic that Sarah feels extremely well and thanks to my Aunt Christine, who sent Sarah some LifeMel Honey. This wonder honey apparent ly helps to boost people with low immune systems, so Sarah cant be any lower than she currently is so thats hope the honey can give her boost to get through cycle 4 and home in good time.

Sarah's Home!

Sarah was discharged from the Lawrence Ward at 2.30pm this afternoon and has been allowed home until Sunday as her neutrophils are at a sustainable level for her to be at home. Just the perfect 60th (sorry mum) birthday present her mum-in-law was praying for. When Sarah returns to Barts on Sunday it will hopefully be for the last time that she will be an in-patient there as we finally reach the last leg on this incredible journey.
This was totally unexpected news as Sarah was told yesterday by another doctor that she wouldn't be allowed home for the birthday weekend as her counts were on the way down. Well as Cartman would say "Screw you hippy!"
Updates on the site may drop off slightly as I have started a new job at an old company(!) and my old work laptop and 3G card doesnt seem to be replaced at the moment! (ed. why did I move??!?)
Anyway, everyone have a great weekend - we will!

The final onslaught of Chemotherapy is well under way and Sarah is two thirds of her way through receiving her last dose.This high level dose of Cytarabine (Ara-C) really has taken its toll on Sarah yet again: she is extremely tired, nauseous and her appetite is severely suppressed, only managing to eat one doughnut & a few crisps each day (Homer Simpson would approve). She is currently on the Lawrence Ward on the 4th floor at Barts and unlike her last hospital stay is not surrounded by her usual cohorts Linn & Karen – although there is hope that all the gang will be back on GHF shortly.
Unfortunately, the new PICC line Sarah had been given to administer drugs and give blood had to come out 24 hours after it was inserted but thankfully this was done with minimal fuss and without the horrors of the Hickmann Line which was removed last month.
Her last doses of Chemo are due Monday 8pm and Tuesday 8am so by lunchtime Tuesday that will be that and it is just a waiting game hoping that nothing serious occurs, but knowing that this might be a possibility and each day will bring new a challenge. Sarah hasn’t seen the kids since she left them last Wednesday but in all honesty it would be unfair for their visits as both Sarah and the children couldn’t fully appreciate each others presence.
The search for knowledge is always there and I have recently discovered another blog about another Leukaemia patient, which contains video diary on a stem cell transplant (http://baldyblog.freshblogs.co.uk/)

“See how many are better off than you are, but consider how many are worse”

Roman philosopher, mid-1st century AD