"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

2/6/04 TO 8/6/04 

8th June Tuesday - Day+21

Weight 63.9kg

Kellie had her aspiration today and we are waiting for the results.  She was zonked out into twilight zone by the pain management team before the aspiration and is still very sleepy 6 hours later.  She has tested positive to the cytomegalovirus (CMV).  This virus lays dormant in the system until you are immunosuppressant and then comes back and can make you extremely ill.  She is showing no signs of this virus but has been put on gancyclovir antiviral injections to beat it before it does rear its head.  The blood samples taken yesterday tested positive but a second sample taken late yesterday tested negative so it is being repeated again.  Also sputum and urine samples have been taken for testing.  Its finger crossing time to make sure everything is fine.  Doctor Louise just came in and told us the bone marrow aspirate confirms early engraftment and red cell and white cell lines are multiplying and no nasties are growing with them.  Yesterdays tablet count was 56.

7th June Monday - Day+20

Weight 64.9kg

Today Kellie is feeling good.  She has slept well.  Her pain is minimal, only a sore knee-joint.  Her magnesium is still low and she will have to have another infusion today.  Tomorrow she will be on oral magnesium, 18 tablets a day.  So far today she has had twenty-seven tablets and it is only 2.30pm.  All of the evening tablets are still to come.  Tomorrow she will be having a bone marrow aspirate to determine if the bone marrow has or is generating correctly.  The possibility of Kellie going home on Wednesday is quite high.  Because she has no infections growing in her blood she will be taken off antibiotics sometime today.

6th June Sunday - Day+19

Weight 64.6kg

Today Kellie has woken up feel very hungry.  She made an urgent call home to make sure I had a tin of spaghetti for her breakfast and she wanted it fast.  Surgeons looked at the abscess on Kellie’s bottom and decided it didn’t need any surgery but required scrapping out and packing with a dressing.  This gave lots of discomfort and tears when it was done late last night.  This morning the procedure had to be performed again.  This will be done twice a day preceded by a long salt bath. Already the smaller abscess is healing, and the larger one is improving.  

5th June Saturday - Day+18

Weight 63.5kg

Kellie is very tired, teary and agitated.  Since she has been back on the morphine she hasn’t slept.  Dr. Karen Tiedeman (Specialist in charge of BMTs) saw Kellie today and is very please with her engraftment and current condition.  Both Karen and the pain team have decided to take Kell off the morphine as she is having a side effect from it (feeling anxious and wired), this is why she can’t sleep.  They are going to try a different approach to her pain management, and also give her sleeping tablets to help her sleep.  No one can function on 2 hours broken sleep over three days.  No sign of graft v host disease, yet.  Kell will also be given blood pressure tablets twice a day to regulate the blood pressure instead of being on a roller coaster and only having a tablet when the BP goes over 150.  Hopefully this will help settle her as well. Today is Mum’s birthday.  Mum, Dad, Peeta and Kellie have celebrated with a chocolate mud cake, which they have also shared with the nurses.  Kellie and Peeta have given me a gift voucher for a deep cleansing facial and back massage.  They must think I have dirty skin and a stiff back.  No really! I am looking forward to it.  How wonderful, thank you girls.  Graham has given me a $500 gift voucher to buy some jewellery or clothes or perfume or all of the above. Thank you!  Kellie has been very much a part of my birthday celebrations and given me a wonderful gift by not being sick and handling this whole BMT thing very well. She never complains.  She is a champion.  Peeta is also doing very well.  With a very busy few weeks she has managed to look after the house, and the dogs, do her homework and study and sit a few exams, with all this happening around her.  Go girls!.  Graham started his new job and so far all is well.  And I am another year older, 45.  That’s middle age for me because I intend living to ninety.

4th June Friday - Day+17

Weight 64.0kg

Ahh, now that’s better. Kellie is back with us.  Kellie had a very crappy day yesterday, with full body aches, pains and discomfort.  Codeine did not work very well at making her feel relaxed and comfortable.  Her blood pressure was up and down all day and she was hot and cold and was suffering from joint pain and quite a sever headache.  At 11.30pm last night they gave her back the morphine pump and she felt much better within an hour.  She is my bright and happy child again.  Dr. Waters came to see Kell quite early this morning and told us she was suffering from serum sickness. This is a reaction to one of the conditioning drugs (TPN) that she had about three weeks ago. The usual reaction to this drug is joint, bone and muscle pain, headaches, tummy tenderness, high blood pressure and slight temperature.  Prednisolone is a steroid that is given over the first to weeks of transplant to counteract these side effects.   Because Kellie had had engraftment over the weekend (day+10-12) and she was travelling very well, they decided to reduce the steroid on Tuesday (day+14), which is when all of these symptoms started.  She has now been put back onto the higher dose of steroid and she feels heaps better.  We just need to be aware of her blood pressure over the weekend because the prednisolone will also increase it.

3rd June Thursday - Day+16

Weight 63.3kg

What miserable girl greeted me today?  Surely this isn’t Kellie.  She woke up with a bad headache and a dull bone ache through her whole body.  Codeine doesn’t seem to be helping. Dr. Louise feels they may have taken her morphine away too soon, or too quickly.  Because her blood counts have been good and she has been progressing very well with engraftment she believes everyone (doctors, nurses, pain management team, oncology fellow, etc) has expected all the other aching problems to have gone away as well.  She has told me everyone has to take a step back and not be too anxious about Kellie leaving.  Thank goodness, because we are not ready for her to go home.  We would rather have her in the hospital a little longer under medical supervision than have to come back again with a problem that could have been avoided in the first place. Her blood pressure has still been quite high but not high enough to give medication to lower it.  Her magnesium is fairly low today and she will need an infusion, which could push the BP up.  Platelets are also on the menu.  These should start to recover on their own soon.  Kellie is extremely tired today.  Dr. Waters decided to give Kellie BP medication because with the magnesium infusion the BP could peek too high.  It is better to lower it before hand.

2nd June Wednesday - Day+15

Weight 63.7kg

Awoke this morning with a temperature of 38.7 and a very stuffy nose.  Blood cultures will be taken today to make sure Kellie is not growing some bugs in her blood. Also swabs will be taken of her nasal congestion. By 1.30pm Kellie has improved.  She is no longer red in the face, stuffy or watery eyed.  Her temperature has dropped to 36.7, so all is well again.  Her skin is still  quite red and itchy but this was expected.  Her platelet count is still a little too low so she will be receiving another infusion of platelets.  She has developed petechiae (pin point bruises) on her legs, bottom and back this is due to her low platelets.

As you can see in the photo, she has her humour back and has grown an extra hand on her head.