"I have cancer, it doesn't have me"

KELLIE ATKINSON

A

  beautiful, intelligent, brave and courageous 15 year old girl

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KELLIE’S STEM CELL TRANSPLANT DIARY

9/6/04 TO 15/6/04 

15^th June Tuesday - Day+28

Weight 63.9kg

Today when I arrived at the hospital the nurses told me it was good news that Kellie was being discharged today.   They all seemed to know something that I didn’t.  As far as I knew Kellie was to still have gancyclovir twice a day – 8am and 8pm.  For Kellie to go home would mean going to the hospital at 7pm being hooked up at 8pm for about one and a half hours for gancyclovir and what ever else is needed, then having her lines disconnected and flushed when the nurse is ready. Then return home about 11pm or later and then wake-up at 6am and return to the hospital by 7.30 in the morning to go through the same process. It sounds a lot easier to me if she stays overnight at the hospital.  After speaking to the doctor, Kellie will not be discharged from the hospital.  Unfortunately we are five kilometres out of the limit for “Hospital in the Home” and the doctor is happy for us to stay a little longer at RCH.  Kellie would become too tired and stressed and then consequently hamper her recovery.  Her blood pressure still tends to be a little unstable and her platelets are not yet being produced by her bone marrow.  Today she is very lethargic and I think this could be due to low platelets.  Her magnesium tablets have been increased to 24 a day but one steroid and one hormone tablet have been reduced. 

  14^th June Monday - Day+27

Weight 63.6kg

Another good day at home, Kellie is full of energy and back to normal, except for the hair loss.  Tonight she will return to the hospital at 7.30 for her nightly infusion.  Blood tests have shown that Kellie has to take in more fluids.  The cyclosporin drug that helps combat graft v host disease needs to be flushed through the system and Kellie hasn’t been having enough fluids at home to do this.  Without the flushing this drug can cause renal damage, so she has been trying to have 200ml – 300ml per hour.

  13^th June Sunday - Day+26

Weight 64.5kg

Kellie came home again today at 11.30.  Peeta and Graham had prepared a banner and balloons to welcome her home. We only had happy tears today.  When she returned to the hospital last night she not only needed her infusion of gancyclovir but also platelets and magnesium.  This would explain some of the extra tiredness and emotions yesterday.  She already takes 21 magnesium tablets a day but can’t seem to maintain a descent level in her system.

12th June Saturday - Day+25

Weight 64.4kg

Well Kellie came home today.  It was a very emotional day.  Dad was invited to a corporate box at the football and Peeta went shopping all day with her girl friends.  Kellie felt like she was back in hospital with just Kell and mum again. We went for a walk around the neighbourhood (Kell was in the wheelchair).  It was much colder than we thought.  Kellie had on warm track-pants, jumper, woolly coat, beanie, scarf and blanket and was still cold so we quickly returned home to settle down in front of the new wood-burning heater. As requested tonight’s dinner is steak and potato casserole with vegetables. After dinner it is back to the hospital for an infusion of gancyclovir.  Kellie will return home about 11am tomorrow.

11th June Friday - Day+24

Weight 65.5kg

Kellie no longer has her nasal gastric tube.  It became blocked again last night and because she has been eating so well they decided to take it out.  She is very happy about that.  But now we can really see how swollen her face is from the steroids.  We still haven’t seen the physio that Louise ordered two days ago so we started our own exercise routine.  We did 10 minutes of walking aerobics (easy walk) followed by 10 minutes of combined abdominal and stretching exercises.  This afternoon Kellie was allowed outside into the Hospital garden with a mask on.  This she enjoyed very much.  She has had her lines disconnected and will only need to be connected again for her gancycolvir infusion at 8 o’clock tonight.  Tomorrow after her 8am infusion we will be GOING HOME for the day and then returning to the hospital for an 8pm infusion.  Kell will stay overnight in the hospital and then go home on Sunday again after the next infusion, to return again Sunday night.  If Kellie is comfortable she will then be able to return home and stay the night.

10th June Wednesday - Day+23

Weight 64.6kg

Kellie looks a million dollars today when I walked in she was sitting up on the lounge reading up on her science.  She didn’t have any sleeping tablets last night and had a “not too bad” sleep.  She is just a little tired this morning.  The plan is to get Kell off all heavy painkillers and sleeping pills.  All blood test results look good except for the platelets and magnesium.  Apparently the platelets can take up to a couple of months before they recover on their own, especially in cord blood transplants.  Her magnesium is low due to the conditioning chemo, but before the BMT conditioning she was having twelve magnesium tablets a day.  Today she will have 18 magnesium tablets and an infusion of magnesium.  She will also have an infusion of platelets.  The CMV test results have come back positive again.  The usual symptoms of CMV are flu like, but we have no sign of them.  Dr. Waters is preparing for us to go home and perhaps use the “Home Hospital” system for Kellie’s twice daily infusion of gancyclovir.  This is where the nurse comes from the hospital with the pump and infusion and sets up at home and observes Kellie.  She only needs twice daily infusions for 7 to 10 days and on Monday it will be 7 days. Because of the public holiday she will not be going home until at least Tuesday because they can’t organise “Home Hospital” until then.

9th June Wednesday - Day+22

Weight 63.9kg

Today we have a very hungry girl.  Her nasal gastric feeds have stopped during the day and only run at night.  She is constantly hungry due to the steroids that she is having for anti-rejection.  Because of this drug her face is quite round.  The nurse has just changed Kell’s lines and she only has two now, one for heprin and one for gancyclovir injections. Tablet count for yesterday was 61.  Today lunch arrived while Kellie was in the bath so see laid back and enjoyed her chicken nuggets and chips while soaking her aching bones.  She didn’t want them to get cold! (The nuggets not the bones) Dr. Waters has just visited and he called Kellie “The Prize Patient”.  Kellie just needs to have another CMV test and if it is clear we will be going home.  The sputum test showed positive CMV but there are no physical signs of CMV.  No temperature, cough, sore throat, abdominal pains or diarrhoea is evident.  So the CMV is a bit of a mystery.  She has had a chest x-ray as a baseline test just in case something starts to show up.