"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 

Kellie believes it is correct now to say

"I HAD CANCER, IT NEVER HAD ME!"

11^th August Wednesday-Day+85

Yesterday we were off to the hospital again for the usual blood tests.  Kellie passed the tests with an A+. Prednisolone tablets have been stopped completely, to be followed by antenolol (blood pressure) and losec on Friday.  Next week the amphetericin and fluconazole will also go.  Then Kellie will only be taking cyclosporin, bactrum (broad spectrum antibiotic), magnesium and iron tablets.  Kellie’s kidney function test was excellent but her liver function had one enzyme just out of the normal range – nothing to be concerned about, and everything else was good, even the magnesium was just hanging in there in the normal range.  Dr. Keith Waters and Dr. Karen Teidemann have classed Kellie as a 100% patient. What does that mean you might say.  Well that’s what I asked and was told that her progress is running to order, without a hitch.  I also found out yesterday that even though her bone marrow is producing all blood products it does not mean her immune system is working.  The bone marrow aspirate in two weeks time will tell us if the immune system has started to improve but is not expected to be fully functional for at least 6 months post transplant.  So even though she has white blood cells and neutrophils to fight small infections she is still immunosuppressant and her body will be unable to fight any major infections without help.  Therefore, Kellie is still in isolation at home with the occasional visit from girlfriends and the occasional trip to the park in wide-open spaces. Peeta has a terrible cold and throat infection at the moment and is trying her best to stay away from Kellie.  She has lots of exams this week at school so is tending to stay in her study away from Kell. Kellie is still going to take the risk and do her Deb. Ball in September and today had her first private dance lesson in preparation for the night.

3^rd August Tuesday –Day+77

Kellie has been much brighter over the last couple of days.  With the decrease in prednisolone came the reduction of facial, neck, back, chest and shoulder swelling.  Kellie seems a little more comfortable in herself and some of her energy and humour has returned.  Today’s trip to the hospital was the shortest we have ever encountered.  We arrived at 9.25 and by 9.40am Kellie’s blood had been collected and sent to pathology.  Dr. Waters was ready to see us at 9.45.  Our appointment lasted for 15 minutes.  We waited for our prescriptions from pharmacy for 10 minutes and then we were on our way home by 10.15am.  The blood results were phoned through to us at 4 o’clock this afternoon.  That’s the way to do it – no waiting.  Dr. Waters is so pleased with Kellie, he has reduced the prednisolone yet again.  Only one 5mg tablet per day and next week it will be stopped.  After the steroid has gone, the fluconozol and amphetericin spray will follow.  The gancyclovir infusions may only go for another two weeks.  When these are taken away then she can have her hickman line (infusion line straight to her heart) removed.  At the end of this month it will have been there for twelve months.  Her liver function test was normal and her colour has returned to pink, not yellow.  Her kidney function was also normal. Keith is allowing the “clean diet” to be adjusted and she can slowly add “normal” food to her daily intake. I was telling Keith how Kell’s energy levels over the past couple of days had improved out of sight, and he was quite happy and asked if she was doing any exercise and she replied that she was walking further and enjoying it but hadn’t taken up marathons yet and she still took the lift. (Not that she ever ran or took the stairs before the transplant). Schoolwork has kept Kell occupied over the past week and her tutor starts tomorrow.  The school applied for special funding from the government for a specialist tutor for Kell.  Funding was approved and we now have a tutor for one hour per week.  Obviously not a lot of funding was approved but every little bit will help.  We have organised the dress, limousine, photographer, make-up, hair and tickets for Kellie’s debutante ball on the 11^th September. KELLIE, DO NOT GET SICK!!!  She will probably have to wear her mask most of the night but when she is presented we will take the risk and allow her to go without it.

28th July Wednesday –Day+71

On Sunday Kellie had her 16^th birthday.  Two of her friends were invited to stay over on Saturday night to help Kellie celebrate.  They cooked pizza and watched movies.  Not the most active party, but all that Kellie could handle.  They tried to sleep in the family room while playing movies all night.  Kellie had a great time but was extremely exhausted the next day.  New pictures are now available for viewing on the photo page.  Thanks to all those people who sent E-mails, birthday cards, presents and wishes.  This cheered her up quite a lot.  Yesterday we saw Dr. Waters for the usual review and blood tests.  Another reduction to the prednisolone dose! YEH!! Kellie’s platelet count has jumped from 64 to 97, this tells us she is producing her own. More YEH!!  Only 29 more days until her bone marrow aspirate that should tell us if her immune system has improved and the marrow is growing well, and there is no leukaemia.  We feel so lucky that she hasn’t had any GVHD yet and no infections (touch wood everyone please).  The thyroid function test was normal and the enlarged thyroid gland could possibly be due to a combination of drugs and radiation. Kellie's bilirubin level (some enzyme found in the liver) is high and causes a little jaundice so she is showing a golden tone to her skin, dark circles under her eyes, and slightly yellow eye balls, but Keith is not too worried. Last week, I managed to stuff up Kellie’s medication for the first time.  Her magnesium levels were low last week and the doc was thinking of increasing her dose but didn’t.  Instead of 10mls 3 times a day Kellie was having 15mls twice a day. We missed the 15mls for the morning dose so I thought I would double it up at the evening dose unfortunate I only gave her 20mls and then 10mls twice a day for 3 days.  I was wondering why Kell was feeling so muscle tired and aching.  Once I discovered my mistake we then increased the dose to 20mls twice a day for 3 days.  Yesterdays Magnesium test showed that her levels were low but in the normal range and her muscle soreness had dissipated.  Whew!!  Graham and I are concerned about Kellie’s depression and are constantly trying to find ways to amuse her and get her out of the house.  So regularly go for walks around the neighbourhood, in the park and go on drives in the car to pick up Peeta or just to break up the day.  We even went to the Drive-In to see Shrek 2.  The Drive-in, now that will bring back memories for some of you.  Unfortunately, being with your parents 24/7 would send anyone around the twist let alone Kellie.  Schoolwork has started to arrive.  Kellie has to research the Cold War for History and learn trigonometry for Maths as well as mass, velocity, acceleration and time for Science.  I have a headache already.  We will try and schedule the morning hours to do school tasks when Kellie has the most energy.

Kellie and Dr Keith Waters

21st Wednesday –Day+64

What a great day we had yesterday at the hospital.  Dr Tiedeman told us that Kellie’s bone marrow is now producing its own haemoglobin.  Although her system is still weak this is very good progress for only being just over two months post transplant.  Her blood pressure is now under control and her medication may soon be decreased.  Both the prednisolone and cyclosporin drugs (for GVHD and rejection) have been reduced.  This is great. Her face has already started to return to normal. The kidney function test was a little out of wack and she needs to take in more fluids, just like the majority of us.  It is Kellie’s 16^th birthday on Sunday and she is planning to have two healthy girlfriends stay over and help her celebrate.  Dr Tiedeman probably wouldn’t approve but we figure Kell’s white blood cells and neutrophils are within the normal range so Dr Mum says OK.  It is becoming hard for Kellie being at home all the time and she has been going through a mental low of late.  As one of the nurses in the outpatients clinic said the doctors want a physically healthy child so they restrict visits, but we also need a mentally healthy child and for a 16 year old visits from friends are very important.  Let’s hope Sunday will be fun for her.  It would be great if she got lots of phone calls or email messages for her birthday.  I’m hoping this will make her feel good, boost her moral and improve her energy levels.  Now that Kellie’s school has returned from holidays she will be getting some work to do from her teachers.  We hope.  She is keen to study and doesn’t want to get too far behind.  It will also give her something to do each day.  The school has organised a tutor but there is only enough funding for 1 hour per week.  So maybe now I will have to put on another hat and become teacher as well.  Poor Kell.  She might go backwards if I teach her.   After three weeks of holidaying, partying, shopping and socialising with some study of course, Peeta has returned to school and now has her head down and tail up getting ready for the VCE.  We are so glad that all the major pressure is off with Kellie and our home life is back to some sort of normality for Peeta’s sake as well as our own.

(Check the photo page for birthday pictures)

13th Tuesday –Day+56

I asked Kellie what I should write today and she said, “Just tell them that I am tired and want to lie down.”  This has been the norm for the last week.  She is still very weak and tired all the time.  We believe this is still a reaction from the radiation and conditioning chemo she had before the transplant.  Dr Karin Tiedeman saw Kellie today and she said her lower levels of haemoglobin would also be having an effect on her energy levels, but she will still not be given any blood.  The blisters turned out to be small sweat glands excreting fluid into tiny skin sacks, like your skin bubbles just before you peel from sunburn, only on a tiny scale.  Liver and kidney function test have been OK today but her thyroid is a little enlarged so a thyroid function test is now on the cards.  This could just be a side effect from the radiation.  CMV has tested negative again.  These tests will now only be conducted every second week but the anti-viral infusions will still go on three times a week for about another couple of months.  Kell’s steroids have been reduced again today.  Her face has already started to return to normal. Beautiful!  The days at home are starting to get a little boring when you only have enough energy to wake up, get out of bed, walk down stairs and lie on the lounge all day watching TV and movies, so on Thursday we went for a walk in the park with the dogs and watched the ducks swimming, had a picnic lunch and then returned home exhausted.  It was good to get out of the house for some fresh air.  On Friday Kellie learnt how to sew and made herself a pair of track pants this occupied most of the day.  She didn’t do a bad job either.  Next week she will attempt the jacket that goes with the pants.  Peeta has already put in her order.  On Saturday Emma (Kell’s girlfriend) visited and brought a little cheer to everyone’s face with the extra large box of lollies and redskins (Kellie’s favourite lolly) that accompanied her.  We decided on a change of scenery and spent Saturday night and Sunday at our holiday home on Phillip Island.  It was cold and raining most of the time but the fire and comfy lounge were just great.  School holidays are over next week so hopefully Kellie’s teachers will send some work her way and the tutor will come and occupy her for a bit more of the time. It is only eight weeks until Kellie’s Debutante Ball and the way she is going we are sure she will be at the presentation and look the “Bell of the Ball”.  Keep up the good work Kellie.

(Check the photo page for our day in the park)

6^th July Tuesday –Day+49

After a nice a relaxing weekend, we attended the hospital again today for our usual appointment.  Kell has had another negative CMV test and has now been changed to three times a week for her infusions. Her stomach pains and diarrhoea have subsided a little over the weekend and the extra pathology and faeces tests carried out have not grown any strange viruses (no biopsy yet. Thank goodness). Her liver function test today has improved on Fridays results but is still not completely normal, and her kidney function is also a little out today. Keith (Dr. Waters) believes the kidney problem is most likely to do with the cyclosporin medication (GVHD prevention), so this drug may be reduced tonight if the pathology comes back with extra high levels showing up in her blood. The good news is that her prednisolone (steroid for GVHD and graft rejection) has been reduced.  Kellie is happy because this drug caused swelling of the face and Kell is sick of looking like a pumpkin.  Also her magnesium has been dropped again to 30mls a day.  If the magnesium were in tablet form again it would be 8 tablets three times a day so we are pleased she is having the liquid, Milk of Magnesia.  Kell’s dad, Graham has been ill with a heavy cold since Friday. The doctor said it wasn’t necessary for him to move out of the house but for him to avoid getting too close to Kellie.  When he leaves the room Kell sprays Glen 20 around the place. So far so good, she hasn’t caught it yet.  He actually had his first sick day off work for about thirteen years (and was actually sick).  Peeta (Kell’s sister), is now on school holidays so it makes it a little easier for me to get out of isolation and do some retail therapy.  We have asked the doctor if Kell could have a friend over to visit.  His answer was “Some of my colleagues would say it is too soon but if the visitor is healthy, scrubs up and wears a mask, I can’t see too many problems with it.”  I say “if it is O.K. for her to sit in out-patients three times a week with about 35 small children all sniffling and coughing and spewing for about 3 hours surely it is O.K. for one healthy 15 year old to sit with her in our house.”  Kellie will be asking Emma to visit sometime this week.   After last nights bath Kellie had small blisters all over her chest and back and her skin was very tender. Could this be the first sign of GVHD on her skin? 

2nd July 2nd July, Friday –Day+45

We have had two full days without going to the hospital, but today Kellie had her appointment with the specialist at the hospital again.  After her blood test and daily infusion Dr. Waters examined Kell and tried to work out why she has been experiencing stomach pains and diarrhoea.  The blood tests revealed that her liver function is not up to scratch.  This could be the first signs of Graft versus Host Disease (GVHD) or it could mean that the drugs are having an effect.  The fact that she has diarrhoea could mean an infection, GVHD or reaction to too much magnesium.  Extra pathology and faeces tests are being done over the weekend to see if anything grows into an infection or something.  Her magnesium intake has been reduced from 60ml per day to 45mls per day.  There are still no signs of GVHD on her skin and Dr. Waters hinted that we may have bypassed this.  If nothing shows up in Kellie’s blood or faeces tests she may need to have a gut biopsy done.  We should know if this is to happen at next weeks appointment. Kellie’s haemoglobin levels are considered OK for this stage of the transplant and therefore there is no need for a blood transfusion.  Tuesday’s CMV (cytomegalovirus) test was negative.  This means that Kell’s gancyclovir infusions can be kept to once a day and on Monday, if today’s test is negative, she can stop these infusions. Kellie is still extremely tired and is getting sick and tired of being tired.  She does not sleep well at night.  She does very little exercise through the day because she is so lethargic and then at night she is not tired enough to go off to sleep.  Perhaps I will have to do some structured exercise with her to physically tire her out.

Kellie's new medicine cupboard at home

28^th June Monday – Day+41

Well it’s been a long time since I last wrote in this diary.  Kellie was finally discharged from the hospital on Monday 21^st.  We didn’t quite get home for the night but we did leave the hospital.  Because Kellie needed to have two infusions a day of gancyclovir it was less time consuming to go home through the day and then go back to hospital at 6.30 – 7pm for the night infusion and then spend the night at Ronald McDonald House and return to the hospital at 8.00am for the morning dose. We did this on Monday and Tuesday then finally on Wednesday she was able to sleep in her own bed.  When Kellie first got home she just walked around and looked in every room like she was saying “Here I am, I made it back!”  It was very touching.  I am now playing nurse and connecting Kellie to her infusion (bomb) at night.  Therefore we only have to be at the hospital every morning for the a.m. infusion and blood tests.  Some times we are only at the hospital for about 3 1/2 hours but on Friday we were here from 8am until 2o’clock.  Kellie’s blood pressure has been giving us the pips.  It is not regulating very well.  She has a breakfast tablet, three lunch tablets and one dinner tablet, all for blood pressure.  Her tablets for the whole day have been reduced to 6 for breakfast, 4 for lunch and 7 for dinner plus 20ml of milk of magnesia three times a day.  We have been able to get out and about a little.  Kellie has to wear her mask while in the company or vicinity of any other people.  On Sunday we got her out of the house and went to the Werribee Mansion and gardens.  We had a picnic in the gardens and then took a leisurely walk through the Mansion. There were hardly any people there but Kell still had her mask on whilst in the building but could take it off while in the gardens.  It was so enjoyable just to be able to go somewhere.  Her steroid medication has been reduced.  Maybe now her face swelling will start to go down.  She is not impressed by it and calls herself  “pumpkin face”.  Today we are currently at the hospital having the gancyclovir infusion. She is very tired and may possibly need platelets or a magnesium infusion.  It is very hard to get the blood counts now so I will only be doing it when they are available.  Kellie’s platelet count is too low so she will be receiving a platelet infusion over the next 3 hours.  Her magnesium is still low but I don’t think it will mean an infusion just yet.  We finally got home from the hospital at about 5 o’clock.  Kellie is still extremely tired.  Whilst at the outpatient clinic, she slept on and off all day and never even stirred when anyone spoke, which is strange for Kellie who is a very light sleeper.  I have checked out her haemoglobin counts over the last forty-one days and only twice before were her counts below 100.  On each of these occasions she had a haemoglobin infusion.  It looks like she will be getting one again tomorrow.

Dr Mum pretending she knows what she is doing