"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

26/5/04 TO 1/6/04 

1st June Tuesday  - Day+14

Weight 64.1kg

Today Kellie woke up feeling good, only some itchy skin.  She said it is not too bad but it is driving me crazy watching her scratch.  I have requested some anti-histamines before she scratches holes in her skin.  Kellie has been given some clarintyne.  Today she will be receiving 2 units of haemoglobin.  The spots on Kell’s hands and feet are signs of engraftment.  Drs and nursing staff are taking bets as to how high her white cell count will be today.  Everyone is very pleased with her progress.  Oncology Fellow, Dr. Kate told us if Kellie’s white cell counts keep increasing the way they are then we should be aiming to go home at the weekend.  This is a total shock to both Kellie and I.  They are trying to change all of Kell's medications to oral rather than intravenous.  If blood counts (white cell and neutrophils) are up and stay up (neutrophils >1) for more than 3 days and she can tolerate oral medications and has no temperature then she can go home.  Kellie did not see this as good news and was quite upset.  She is scared to go home.  She is currently in an infection free safe medically assisted environment.  She is concerned that she hasn’t experienced the worst yet and is worried if we go home something will happen.  The oncology nurses have told us it is far too early yet and that the dr. has just said this to get the ball rolling regarding oral medications, normal eating, discharge and appointment arrangements, accommodation etc., so that we are more prepared when the levels do stay up.  I had to reassure Kell that they would not send her home unless everything was O.K. and she may have experienced everything bad that she is going to experience.  All the poor cinereous are not always going to happen to everyone.  She has been a model patient and her body has coped very well with everything that has been thrown at her.  I am so proud of Kellie.  I have never known a more gorgeous, courageous, philosophical, patient, intelligent person in my life.  Keep up the good work Kell!

31st May Monday - Day+13

Weight 64.4kg

No aches or pains this morning and no need to start the day with a dose of Panadol.  Blood counts are starting to pick up a bit, hopefully the start of a positive trend.  Platelets and magnesium required today. Kellie’s blood pressure is 136/86.  Temperature 37.8.

30th May Sunday - Day+12

Weight 64.4kg

Again, Kellie woke up with a headache and some minor stomach pains, and again these were remedied with a shot of Panadol and a good long bath.   Blood sugars today have stayed at 13.  This is very good.  Mum arrived back from Wollongong at 7pm with good news that granddad was OK after his operation.

29th May Saturday - Day+11

(Dad stays over)

Weight 64.6kg

Kellie woke up with a headache and some minor stomach pains, these were remedied with a shot of Panadol and a good long bath.  Kell spent some time on her own today as Dad ran Peeta to and from netball, she went to the Missy Elliot concert last night and stayed at Gemma’s going to school netball this morning.  Dad picked her up and brought her into the hospital to see Kell before returning to Rowville netball.  Mum took the phone video camera with her to Wollongong so she called in from Grandma’s and again later in the day from Phil and Corrine’s. After the initial aches and pains, the day was fairly uneventful for Kell, blood sugars are still high but coming down, blood pressure is still high but not getting any worse.  Kellie really likes it when Dad stays over cause she gets to watch all the football. (written by Dad)

28th May Friday - Day+10

(Dad stays over)

Weight 64.2kg

Today is another good day.  Some infusions will be happening later today – potassium, magnesium and once again platelets.  Kellie is still borderline hyperglycaemic.  Her blood sugar levels are still quite high at 19.9.  Dr. Waters believes this is a direct result of the steroids and antibiotics.  On Tuesday D+14 the steroids will be reduced and they expect her sugar and high blood pressure to drop.  Only if her blood sugars go up to about 24 and stay above 20 will they then think about insulin or other measures.  Blood pressure last night was 163/98.  She was given medication but her blood pressure then dropped too low.  Good thing it was in the middle of the night and she was lying down sleeping.  Otherwise she would have felt very ill.  Today it is still high but under 140/70.  Mum is going to Wollongong tomorrow to see grandma and granddad – granddad is having an operation on his carotid artery today.  She will be back by Sunday.

Kellie’s nasal passage is quite congested.  This could just be thick mucus caused by the chemo, radiation and nasal spray.  The Doctor is going to have a viral test done on the nasal passage tomorrow just to be on the safe side.  There is no high temperature, so the likelihood of a virus is very low.

27th May Thursday - Day+9

(Mum stays over)

Weight 64.8kg

Today has been a very good day.  Dr. Louise is very impressed with Kellie and her progress so far.  Her blood levels are very good and her sugar is normal.  Blood pressure was high earlier in the day but has dropped to a normal level this afternoon.  Kellie is sitting up doing homework right now, but only after a two-hour sleep.  The only thing that has changed for Kellie is palmar erythraemia – spots on the hands.  This does not irritate or any thing just looks strange.  Still waiting for the doctor to tell us what it really means.

26th May Wednesday – Day+8

(Dad stays over)

Weight 64.2kg

Kellies nasal gastric tube was blocked overnight, it took from 10pm to 1.30am for it to be cleared – not much sleep.  Everything else is OK.  Yesterday was hair pull out day.  Last time she lost her hair she tried to keep it as long as possible, this time she seemed keen to get rid of it as quickly as possible.  It’s now sitting in a green bowl by her bed.  All that remains is a tuft that would make Flako proud.  Along with the usual array of drugs, fluids and feed Kell will be getting a bag of platelets today. We were expecting this because one small finger-prick last night caused a large spray of blood and a total bed sheet change.  Her albimum (protein) levels are also very low so she will need an infusion of this.  Blood sugar reading was 9.9 - coming down.  The doctors are happy with this.