"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

18/5/04 TO 25/5/04 

25th May Tuesday – Day+7

(Mum stays over)

Weight 64.5kg

Kellie has been praised for her mouth-care as she has not got a mouth full of ulcers.  Her neck and shoulder pain has almost gone and her chest and abdomen are O.K.

Kellie had to have a finger prick blood test last night because there was sugar in her urine. Her non-fasting blood-sugar levels were 17. Oh no!! Thanks grandma.  Finger prick blood test today shows that her fasting levels were 12.4.  She has high glucose and has to reduce her sugar intake.  No more flat lemonade to take her tablets. Kellie’s other blood tests today showed a very quick drop in her haemoglobin.  The doctor can’t believe this to be true so she has ordered a repeat test and then if it is the same result Kell will need a blood transfusion.  The blood cultures have not grown any subsequent organisms since last Saturday.  This is good news.  No new infections. Pain tolerance team came today and have decided to raise the level of morphine in Kellie’s pump from 1ml/5 min to 1.5ml/ 5min.  Kellie is now fast asleep at 2pm and has been for the last hour and half.  Thank goodness, she needs it.  The repeat blood test shows us that the first test was correct.  Kellie is now hooked up and receiving three bags of O+ red blood cells

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   24th May Monday – Day+6

(Dad stays over)

Weight 64.3kg

Kellie is very lethargic today.  Has had a dull headache all morning and it gets more intense when she stands or sits up.  Morphine doesn’t seem to be helping.  She has developed very stiff calves when she first stands up.  The muscles just don’t want to stretch. She would really like to sleep but when ever she goes off to sleep the nurse then appears at the door and wakes her up.  The doctor tells us the bloods are good.  The infection that she has is some kind of staphylococcus bacteria and the specific antibiotics that she is having are working well to control it.  Her bottom is not getting any worse.  Kellie’s comment “I am tired and need a sleep.”  I feel the dose of morphine that she is having isn’t quite high enough to put her to sleep but just enough to aggravate her and make her restless and tired.

23rd May Sunday – Day+5

 (Mum stays over)

Weight 64.00kg

Kellie has woken up feeling good.  She still has a temperature, 38.5.  Blood cultures have shown that she is growing an infection and now she has been put on vancomycin (specific antibiotic).  Platelet count is still low, so Kellie is receiving another infusion of platelets.  She needs two salt baths a day to help with the healing of her bottom.  She is still maintaining a temperature between 38.2 and 38.8.

Hair loss is upon us.  Kellie is pulling it out in clumps so it is over and done with quickly.

22nd May Saturday – Day+4

                                                       (Dad stays over)

Weight 64.4kg

Kellie woke up quite early and distressed.  Has severe pain in her right shoulder, we thought maybe she slept on it wrong but most likely referred pain from her liver.  Waiting for doctor to assess her condition.  Her bottom is very sore due to cracking and splitting she is using antibacterial and anti-fungal cream to avoid infection.  Blood cultures have been taken to make sure nothing weird is growing in there.  Kellie’s temperature has been up so far today 38.2. Blood tests confirm that Kellie’s shoulder pain is not coming from her liver, spleen or lungs.  More likely her oesophagus and the fact that the morphine make her sleep very still and she hasn’t moved off her shoulder all night. Her platelets are low and she will receive an infusion of these some time today.

21st May Friday – Day+3

 (Mum stays over)

Weight 64.4kg

Kellie was put on a morphine self-dosing pump today to help with the pain in the chest from ulcers.  Her skin is starting to crack in the creases and becoming painful.  She is tired from the morphine and low blood levels but still managed 10.5 minutes on the exercise bike.  What a champ.  Is managing 40ml per hour of nasal gastric feeds but makes her a little nauseas.  The progression to 100ml per hour is a little slow.  Blood pressure was a little high all day but just staying below 160/90 (the level when they will give her medication). 

20th May Thursday – Day+2

Weight 63.7kg

Kellie woke up today at 9.30 again.  Her oesophagus is giving her curry already today.  Have requested Losec to ease the burning and Dr Waters agreed that she needs it.   Kellie’s platelet count has rock bottomed so she will be given an infusion of these today.  Sleeps on and off most of the day.  We are still waiting for something to happen for the worse (Dr. keeps warning us it is about to happen).

19th May Wednesday – Day+1

 (Mum stays over)

Weight 64.4kg

Kellie is doing very well today.  Slept until 10.15 this morning. Nasal gastric tube is reinserted and feeds start at 20ml per hour to eventually being 100ml per hour over the next couple of days. 

10 minutes on the exercise bike.  Kellie’s throat and oesophagus is getting quite sore and it hurts to eat.  GCSF is started today to promote bone marrow growth.

18^th May Tuesday - Day Zero 

TRANSPLANT DAY

 (Mum stays over)

Today is day zero.  The transplant will take place at approx 11.30am.  Kellie is in fine spirits and has had no problems since last night.  Stem cell infusion took about 30mins. Stem cell bag is about the size of a packet of tiny teddies only narrower. Very non eventful.  Thank goodness.  Blood pressure a little high but docs are not too concerned. Kellie is sleeping peacefully.  Her blood group will be changing from O+ to B+. Stem cells have been flown all the way from Switzerland so no wonder she is exhausted.  Maybe tomorrow she will wake up yodelling.  Balance of the day transpires with little in the way of reactions other than a few temporary rashes and raised blood pressure.